tag:blogger.com,1999:blog-47444277734017079382024-03-27T09:35:23.376-07:00StonebirdThe Lived Experience of Severe ME
(voted one of the top 50 ME blogs on the internet 2017.)
Unknownnoreply@blogger.comBlogger922125tag:blogger.com,1999:blog-4744427773401707938.post-51575855813257799612024-03-27T08:52:00.000-07:002024-03-27T09:34:50.716-07:00New Video shortlisted in International Competition<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEe-jz90iKPvOZMIaIpUOIR3O8zY4WiC7gFvL7-IvIPPO1iAFS_WIBa7fQHPvBpzLBEYC1hfIswKkhX5ltvLj0Be6Vh0k8w3-kn_41RDQejpvCeU8JQtcl1J1pGvH1NN_SB4ApKDbtpBqlqBaOSV0_Kl_LmJFyhm3iWrpaz_Ted4QAGVEjNS7aIALGbL0/s2348/IMG_4940.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1320" data-original-width="2348" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEe-jz90iKPvOZMIaIpUOIR3O8zY4WiC7gFvL7-IvIPPO1iAFS_WIBa7fQHPvBpzLBEYC1hfIswKkhX5ltvLj0Be6Vh0k8w3-kn_41RDQejpvCeU8JQtcl1J1pGvH1NN_SB4ApKDbtpBqlqBaOSV0_Kl_LmJFyhm3iWrpaz_Ted4QAGVEjNS7aIALGbL0/s320/IMG_4940.jpeg" width="320" /></a></div><br /><p><br /></p><p>Well done Greg for this moving video, music composed and performed by him, also wonderful expressive drawings that convey emotion so powerfully!</p><p><a href="https://www.youtube.com/watch?v=i-HoS_A7wps">https://www.youtube.com/watch?v=i-HoS_A7wps</a></p><p>A huge achievement to be shortlisted in an international creative art competition out of so many.people.:</p><p><a href="https://alpinefellowship.com/visual-art-prize">https://alpinefellowship.com/visual-art-prize</a></p><p><span style="background-color: white; caret-color: rgb(13, 13, 13); color: #0d0d0d; font-size: 15px;">“There are no words to describe caring for someone in agony for more than thirty years. This video was shortlisted out of over 1800 entries for the 2024 Alpine International Arts Prize.”</span></p><p>There are no words, the only answer is love.</p><div class="blogger-post-footer">Stonebird : the lived experience
of Severe Myalgic Encephalomyelitis (ME)
www.stonebird.co.uk</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4744427773401707938.post-33174290617058991962024-03-02T05:41:00.000-08:002024-03-02T05:41:49.213-08:00Cobweb Years<p> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhC_o3n_cJr9dUV1dsoSaAo8v0BC8Udwe19xtZFi80nMGFnPmu9AAxVM210qiJmVyhNKBerp6_Gh-1I2z5xSc9m4wBPwhq5brMz6GzdVpqPzClpA4nShzYcoaA4QdSDzfAyEiMQNrbF9dnRbiQCBvN3YPnwNzr3J7y7AepEt7S4dzcvzbibQNnyWTI8bgQ/s2339/IMG_4563.jpeg" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="1339" data-original-width="2339" height="183" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhC_o3n_cJr9dUV1dsoSaAo8v0BC8Udwe19xtZFi80nMGFnPmu9AAxVM210qiJmVyhNKBerp6_Gh-1I2z5xSc9m4wBPwhq5brMz6GzdVpqPzClpA4nShzYcoaA4QdSDzfAyEiMQNrbF9dnRbiQCBvN3YPnwNzr3J7y7AepEt7S4dzcvzbibQNnyWTI8bgQ/s320/IMG_4563.jpeg" width="320" /></a></p><p>A beautiful love song, written by Greg, illustrated very movingly by this wonderful video.</p><p><a href="https://www.youtube.com/watch?v=56jFWXNA8iU&feature=youtu.be">https://www.youtube.com/watch?v=56jFWXNA8iU&feature=youtu.be</a></p><p>Love has always sustained us through the most difficult of challenges and desolate experiences.</p><div class="separator" style="clear: both; text-align: center;"><br /></div><br /><p></p><div class="blogger-post-footer">Stonebird : the lived experience
of Severe Myalgic Encephalomyelitis (ME)
www.stonebird.co.uk</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4744427773401707938.post-18752119518309172762024-03-02T01:58:00.000-08:002024-03-02T01:58:10.981-08:00When you have to say “Go Away”<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjm3X6dz_ZUN8xPMH61n_NDXwqIGH2Gh-lWiEBl8xTuEy3doLLBeNX-OBkCRlDsAq8LNnfnqoubMmIScUUHh02yMLPbP_vDfR38bZKuttTuiKAl4v5AwPXin5WGZm8zrr9NDEv68DFve-JTPXkIAlh267rEWS8gWN83006mbsmJcA1dfpbAD-HHz6-F6_g/s1642/IMG_4455.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1642" data-original-width="1538" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjm3X6dz_ZUN8xPMH61n_NDXwqIGH2Gh-lWiEBl8xTuEy3doLLBeNX-OBkCRlDsAq8LNnfnqoubMmIScUUHh02yMLPbP_vDfR38bZKuttTuiKAl4v5AwPXin5WGZm8zrr9NDEv68DFve-JTPXkIAlh267rEWS8gWN83006mbsmJcA1dfpbAD-HHz6-F6_g/s320/IMG_4455.jpeg" width="300" /></a></div><br /><p><span style="-webkit-text-size-adjust: auto; caret-color: rgb(5, 5, 5); color: #050505; font-family: inherit; font-size: 15px; white-space: pre-wrap;">This is a document we published a while ago. There are can be so many ways that you can trigger deterioration or symptom exacerbation if you do not understand:</span></p><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;">1. how to be with the person </div><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;">2. when not to be with the person </div><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;">3. and why that is necessary.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;"><span style="background-color: white; font-size: 15px;">It </span><span style="-webkit-text-size-adjust: auto; background-color: white; font-size: 15px; white-space: pre-wrap;">was written shortly after my book </span><span style="font-family: inherit; font-size: 15px;">"More Notes For Carers" and highlights how the most ill can easily be misinterpreted by Assessors plus the crucial importance of a Risk Assessment.</span></div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;"><span style="animation-name: none; font-family: inherit; transition-property: none;"><a class="x1i10hfl xjbqb8w x1ejq31n xd10rxx x1sy0etr x17r0tee x972fbf xcfux6l x1qhh985 xm0m39n x9f619 x1ypdohk xt0psk2 xe8uvvx xdj266r x11i5rnm xat24cr x1mh8g0r xexx8yu x4uap5 x18d9i69 xkhd6sd x16tdsg8 x1hl2dhg xggy1nq x1a2a7pz xt0b8zv x1fey0fg" href="https://l.facebook.com/l.php?u=https%3A%2F%2Fstonebird.co.uk%2Fgoaway.pdf%3Ffbclid%3DIwAR3s4JmHrkxgVV-fyxYp4FrFU5YOpVEVZplBQ3lsO2FDmDahKd8oeFHYhLc&h=AT1h9vZkcDZS294gp6lOcNnv4r01j9aZQUavd-EHer72yk1TafqHbhL3jhKDWwmNstQ0_zMHxAdpKbomzaA4aYy6siDSDdNwbO9DHWmQGLUHCTY9P-OUiiTfNS-kLd1fqP3MI0_AvQ&__tn__=-UK-R&c[0]=AT16AfUm02KxV4fqaB2CisjSWaafkz3NoyhLl4N_O1vfbMzBYbgdjpjU6OmwSeV35M9bAWQiG25HuD43zGZUHRCXfFcdbSpptRtbtjC4d_iK6-zVCCAKtX2vsa7Jd7p2FE3W9SxYYPeF1AVWS949iNZFEOLHo0tC5VdwyP04HWyjxUE3F-m_2Q" rel="nofollow noreferrer" role="link" style="-webkit-tap-highlight-color: transparent; animation-name: none; border-style: none; border-width: 0px; box-sizing: border-box; color: #050505; cursor: pointer; display: inline; font-family: inherit; list-style: none; margin: 0px; outline: currentcolor; padding: 0px; text-align: inherit; text-decoration: none; touch-action: manipulation; transition-property: none;" tabindex="0" target="_blank">https://stonebird.co.uk/goaway.pdf</a></span></div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;">(Link to "More Notes For Carers". <span style="animation-name: none; font-family: inherit; transition-property: none;"><a class="x1i10hfl xjbqb8w x1ejq31n xd10rxx x1sy0etr x17r0tee x972fbf xcfux6l x1qhh985 xm0m39n x9f619 x1ypdohk xt0psk2 xe8uvvx xdj266r x11i5rnm xat24cr x1mh8g0r xexx8yu x4uap5 x18d9i69 xkhd6sd x16tdsg8 x1hl2dhg xggy1nq x1a2a7pz xt0b8zv x1fey0fg" href="https://l.facebook.com/l.php?u=https%3A%2F%2Fstonebird.co.uk%2Fmorenotes%2Findex.html%3Ffbclid%3DIwAR3s4JmHrkxgVV-fyxYp4FrFU5YOpVEVZplBQ3lsO2FDmDahKd8oeFHYhLc&h=AT24BG8O9feViHBC3NGVQs4zqYSRL1j-pihjgXofTfBi99preXZ7yQviXWtsVBfBmURetmu1ML0exG9RmQZ55jPXatVn8S31lEzdlGd_VvPUVOny_JzX0z3QlyoBjKrt451T8gCopQ&__tn__=-UK-R&c[0]=AT16AfUm02KxV4fqaB2CisjSWaafkz3NoyhLl4N_O1vfbMzBYbgdjpjU6OmwSeV35M9bAWQiG25HuD43zGZUHRCXfFcdbSpptRtbtjC4d_iK6-zVCCAKtX2vsa7Jd7p2FE3W9SxYYPeF1AVWS949iNZFEOLHo0tC5VdwyP04HWyjxUE3F-m_2Q" rel="nofollow noreferrer" role="link" style="-webkit-tap-highlight-color: transparent; animation-name: none; border-style: none; border-width: 0px; box-sizing: border-box; color: #050505; cursor: pointer; display: inline; font-family: inherit; list-style: none; margin: 0px; outline: currentcolor; padding: 0px; text-align: inherit; text-decoration: none; touch-action: manipulation; transition-property: none;" tabindex="0" target="_blank">https://stonebird.co.uk/morenotes/index.html</a></span>)</div></div><div class="blogger-post-footer">Stonebird : the lived experience
of Severe Myalgic Encephalomyelitis (ME)
www.stonebird.co.uk</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4744427773401707938.post-38189049805436715262024-02-29T04:18:00.000-08:002024-02-29T04:18:44.934-08:00HOW TO BE ASSERTIVE IN ARTICULATING YOUR NEEDS.<p><span style="-webkit-text-size-adjust: auto; caret-color: rgb(28, 30, 33); color: #1c1e21; font-family: inherit; font-size: 0.9375rem;"><br /></span></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjr57GdyZAyA6WeERHKY3RKeOl4wSVTMrQtwy3Y_WSDwa86T26QhtVFfetvBiibXX9kllADlKvDIlwvw_uyQrSjvjMlT2cYytO8SdQ7NTGYgmpWlzdOhMMmneJSdqt7SWBVUfxHmNkDzBHcgk7LbhRMbwSV-6Zw4KYv8Cl9INXsSdxQwkDUCOZwsMHY52E/s2048/IMG_4487.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjr57GdyZAyA6WeERHKY3RKeOl4wSVTMrQtwy3Y_WSDwa86T26QhtVFfetvBiibXX9kllADlKvDIlwvw_uyQrSjvjMlT2cYytO8SdQ7NTGYgmpWlzdOhMMmneJSdqt7SWBVUfxHmNkDzBHcgk7LbhRMbwSV-6Zw4KYv8Cl9INXsSdxQwkDUCOZwsMHY52E/s320/IMG_4487.jpeg" width="240" /></a></div><br /><span style="-webkit-text-size-adjust: auto; caret-color: rgb(28, 30, 33); color: #1c1e21; font-family: inherit; font-size: 0.9375rem;"><br /></span><p></p><p><span style="-webkit-text-size-adjust: auto; caret-color: rgb(28, 30, 33); color: #1c1e21; font-family: inherit; font-size: 0.9375rem;">HOW TO BE ASSERTIVE IN ARTICULATING YOUR NEEDS.</span></p><div class="xyinxu5 x4uap5 x1g2khh7 xkhd6sd" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(28, 30, 33); color: #1c1e21; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 12px; padding: 14px 0px; transition-property: none !important;"><span class="x193iq5w xeuugli x13faqbe x1vvkbs xlh3980 xvmahel x1n0sxbx x1lliihq x1s928wv xhkezso x1gmr53x x1cpjm7i x1fgarty x1943h6x x4zkp8e x3x7a5m x6prxxf xvq8zen xo1l8bm xzsf02u" dir="auto" style="-webkit-font-smoothing: antialiased; animation-name: none !important; display: block; font-family: inherit; font-size: 0.9375rem; line-height: 1.3333; max-width: 100%; min-width: 0px; overflow-wrap: break-word; transition-property: none !important; word-break: break-word;">Linda faces major medical challenges this year, it is incredibly difficult working out how to convey her complex issues and needs to professionals so that they comprehend what she needs to keep her safe.<br style="animation-name: none !important; transition-property: none !important;" /><br style="animation-name: none !important; transition-property: none !important;" />It is so important that we do this, for the terrifying consequences, if they get anything, I stress “anything at all”, wrong are potentially life threatening or will trigger unimaginable suffering and deterioration..<br style="animation-name: none !important; transition-property: none !important;" /><br style="animation-name: none !important; transition-property: none !important;" />We have to find some way to articulate what, let’s face it, is beyond incomprehensible to most people.<br style="animation-name: none !important; transition-property: none !important;" /><br style="animation-name: none !important; transition-property: none !important;" />I know we have done it before and we will do it again, only this time the stakes are much, much higher. This is bigger than anything we have ever faced. There is zero room for misunderstanding ahead, so it’s really serious.<br style="animation-name: none !important; transition-property: none !important;" /><br style="animation-name: none !important; transition-property: none !important;" />Day and night all of this is constantly on my mind. The stress, right now, is huge.<br style="animation-name: none !important; transition-property: none !important;" /><br style="animation-name: none !important; transition-property: none !important;" />Anyway, I was listening to the “Today” program this morning on Radio 4 and they had an airline executive on. He said something that stopped me in my tracks, I was making breakfast.<br style="animation-name: none !important; transition-property: none !important;" /><br style="animation-name: none !important; transition-property: none !important;" />I immediately jotted it down:<br style="animation-name: none !important; transition-property: none !important;" /><br style="animation-name: none !important; transition-property: none !important;" />“Ambitious expectations”.<br style="animation-name: none !important; transition-property: none !important;" /><br style="animation-name: none !important; transition-property: none !important;" />Wow, I thought, my mind racing back down the years.<br style="animation-name: none !important; transition-property: none !important;" /><br style="animation-name: none !important; transition-property: none !important;" />I used to run one, two, three day workshops for health and social services staff up and down the country. One of the things I used to do, at service stations was have a burger and coke and then buy business motivation talks to listen to in the car; they were a rich source of ideas and out of the box inspiration; my workshops aimed to be wildly innovative. <br style="animation-name: none !important; transition-property: none !important;" /><br style="animation-name: none !important; transition-property: none !important;" />Often, with aid of balloons, rocks and plasticine, I would run Team Building Sessions, which always came down to examining how effectively was the team communicating with each other? Time and again they weren’t.<br style="animation-name: none !important; transition-property: none !important;" /><br style="animation-name: none !important; transition-property: none !important;" />So we would work out respectful, clear, communication strategies.<br style="animation-name: none !important; transition-property: none !important;" /><br style="animation-name: none !important; transition-property: none !important;" />Those motivation talks in the car, over and over again, they all used to stress how ultimately life boils down to how assertive one is in communicating one’s wants, needs and boundaries to others - and especially one’s self.<br style="animation-name: none !important; transition-property: none !important;" /><br style="animation-name: none !important; transition-property: none !important;" />In fact what impressed me most about Linda, when we met, was how very clear she was, from her years of training to be a person-centred counsellor, about boundaries.<br style="animation-name: none !important; transition-property: none !important;" /><br style="animation-name: none !important; transition-property: none !important;" />Without boundaries you almost inevitably end up game playing a Victim, Rescuer or Persecutor role, or perhaps all three at once. That is a miserable way to spend your life.<br style="animation-name: none !important; transition-property: none !important;" /><br style="animation-name: none !important; transition-property: none !important;" />I continue to learn. <br style="animation-name: none !important; transition-property: none !important;" /><br style="animation-name: none !important; transition-property: none !important;" />So, of course, in the team-building workshops we would end up discussing assertiveness, the emphasis being on the healthy difference between being assertive as opposed to being aggressive or sadly pathetic.<br style="animation-name: none !important; transition-property: none !important;" /><br style="animation-name: none !important; transition-property: none !important;" />You see, standing up for yourself and being assertive are one and the same thing; your ability be an effective communicator. I am extremely aware, however, as I write this, of the context which we are immersed in now, that of profound disability, unimaginable suffering and devastating cognitive dysfunction, making any kind of accurate communication almost impossible.<br style="animation-name: none !important; transition-property: none !important;" /><br style="animation-name: none !important; transition-property: none !important;" />Nevertheless, between us, we have to find a way to be assertive in our communication with medical professionals.<br style="animation-name: none !important; transition-property: none !important;" /><br style="animation-name: none !important; transition-property: none !important;" />Okay then, dusting off and putting my old staff trainer hat back on this morning, here I am reminding myself of very basic strategies:<br style="animation-name: none !important; transition-property: none !important;" /><br style="animation-name: none !important; transition-property: none !important;" />1. Cut to the chase, say what you want, rather than what you “need”, it sounds more assertive already. For example simply saying that “I want a quiet, side room to be seen in, ” seems much clearer, to me, than getting bogged down in something infinitely more convoluted and difficult to comprehend like : “I need not to be with other people, I need not to be exposed to perfume, to noise, to movement etc….”, even though this is also correct. Don’t wait for the clinician to somehow guess what it is you want. Make it crystal clear, from the off - that depends on you having done the work yourself in the first place. How well do you know what your own needs are?<br style="animation-name: none !important; transition-property: none !important;" /><br style="animation-name: none !important; transition-property: none !important;" />2. Expect to be treated with dignity and respect, that is the foundation of self- belief and self confidence. Linda has always deeply impressed me with how she has always stood up for her rights, particularly when no one else has.<br style="animation-name: none !important; transition-property: none !important;" /><br style="animation-name: none !important; transition-property: none !important;" />3. Stick to your guns. If something is not possible, then, politely, without being a victim, or being aggressive or pushy, ask how can it be made possible? This is not necessarily as easy as it sounds. The alternative is to not get your needs met. It is truly amazing how in our life we have consistently made the impossible happen. We have found that there is always a way, if you look and persevere.<br style="animation-name: none !important; transition-property: none !important;" /><br style="animation-name: none !important; transition-property: none !important;" />4. Take back your own power. Remember that you are not responsible for other’s behaviour, you don’t have to take on their likely ignorance and possible rejection and then feel awful inside. Stay calm and be very clear about your wants and expectations; they could not be more important!<br style="animation-name: none !important; transition-property: none !important;" /><br style="animation-name: none !important; transition-property: none !important;" />5. At all times be extremely courteous, articulate and “professional”. I can’t think of a better word. Linda and I have always stressed this on Stonebird. Don’t be afraid to challenge, confront, restate your need, but always, always, listen to and respect the other person with dignity and speak politely. In all that we write we try to never name or personally criticise another, rather we focus on the facts and issues instead. <br style="animation-name: none !important; transition-property: none !important;" /><br style="animation-name: none !important; transition-property: none !important;" />Your aim is this :<br style="animation-name: none !important; transition-property: none !important;" /><br style="animation-name: none !important; transition-property: none !important;" />1. To accurately convey how you feel in the best possible way : “I am very concerned that you understand exactly how my symptoms affect me, so that you do not harm me.”<br style="animation-name: none !important; transition-property: none !important;" /><br style="animation-name: none !important; transition-property: none !important;" />2. To state exactly what you require: “I need you to be very clear with me about all the risks involved and how you are going to meet them.” Hence, as we have stressed for many years on Stonebird, the critical need for a Risk Assessment, particularly in the complex care and treatment of the most ill.<br style="animation-name: none !important; transition-property: none !important;" /><br style="animation-name: none !important; transition-property: none !important;" />3. To outline the consequences: “If you minimise the risks, as much as possible, then that increases the chances of a successful procedure, on the other hand if you do not take my wants and needs into account, or consider them trivial, irrelevant, unfortunate, insignificant, then the consequences may be very serious indeed.” <br style="animation-name: none !important; transition-property: none !important;" /><br style="animation-name: none !important; transition-property: none !important;" />I guess one could say, yes, the aim is to have “ambitious expectations</span></div><div class="blogger-post-footer">Stonebird : the lived experience
of Severe Myalgic Encephalomyelitis (ME)
www.stonebird.co.uk</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4744427773401707938.post-46306745891079366922024-02-26T12:01:00.000-08:002024-02-26T12:01:24.329-08:00Broken, a new song<p><span style="color: #050505;"><span style="-webkit-text-size-adjust: auto; caret-color: rgb(5, 5, 5); font-size: 15px; white-space-collapse: preserve;"><br /></span></span></p><p><span style="color: #050505;"></span></p><div class="separator" style="clear: both; text-align: center;"><span style="color: #050505;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvYS3BbD7vVXTPCmNWgQHpx9A8h7Vztu3rIRg9eEMAX0xukhCs3zN0oC0Ue9_sm6wl3LXbCedQ8NszRZDoVs_GyTG5KjbXWlDqZrbogpaPRGQ5PVxj9wT6eQGQcx3xbi06R-UnjqXSrxSDjxLo6Dxc4l5P31zcny-WPkDuAeBrzDxeNjUgD0vE4IEOpw8/s5152/IMG_3005.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3864" data-original-width="5152" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvYS3BbD7vVXTPCmNWgQHpx9A8h7Vztu3rIRg9eEMAX0xukhCs3zN0oC0Ue9_sm6wl3LXbCedQ8NszRZDoVs_GyTG5KjbXWlDqZrbogpaPRGQ5PVxj9wT6eQGQcx3xbi06R-UnjqXSrxSDjxLo6Dxc4l5P31zcny-WPkDuAeBrzDxeNjUgD0vE4IEOpw8/s320/IMG_3005.jpeg" width="320" /></a></span></div><span style="color: #050505;"><br /><span style="-webkit-text-size-adjust: auto; caret-color: rgb(5, 5, 5); font-size: 15px; white-space-collapse: preserve;"><br /></span></span><p></p><p><span style="color: #050505;"><span style="-webkit-text-size-adjust: auto; caret-color: rgb(5, 5, 5); font-size: 15px; white-space-collapse: preserve;">Here is a new song. It’s up best music with very powerful moving video about living in broken spaces. Words and music by Greg.</span></span></p><p><a href="https://www.youtube.com/watch?v=X4hBMpbvDdg&feature=youtu.be">https://www.youtube.com/watch?v=X4hBMpbvDdg&feature=youtu.be</a></p><div class="blogger-post-footer">Stonebird : the lived experience
of Severe Myalgic Encephalomyelitis (ME)
www.stonebird.co.uk</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4744427773401707938.post-77075646040944753692024-02-22T08:32:00.000-08:002024-02-22T08:32:54.355-08:00You Can<p> </p><p><span style="-webkit-text-size-adjust: auto; background-color: white; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px;"><br /></span></p><p><span style="-webkit-text-size-adjust: auto; background-color: white; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px;"></span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjcI9joRMyvrl9fdGxYj47pmlVJSByx3NklMqGLV8X5IttCuRatXRobUA8QCkUyI6sSr8D52tCtpMm6qFJt6IjRhPLbWQfV_xY4-WfrvqXSfiMiPSOy10O4mNPuhYPgwtc_QyimS8y4Gs9Mbl0Vj3_f3xCW_H0wSiYtqispoufod-JFEeIg6XCJLrZDsA/s2048/IMG_4425.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1613" data-original-width="2048" height="252" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjcI9joRMyvrl9fdGxYj47pmlVJSByx3NklMqGLV8X5IttCuRatXRobUA8QCkUyI6sSr8D52tCtpMm6qFJt6IjRhPLbWQfV_xY4-WfrvqXSfiMiPSOy10O4mNPuhYPgwtc_QyimS8y4Gs9Mbl0Vj3_f3xCW_H0wSiYtqispoufod-JFEeIg6XCJLrZDsA/s320/IMG_4425.jpeg" width="320" /></a></div><br />YOU CAN<p></p><br style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;" /><span style="-webkit-text-size-adjust: auto; background-color: white; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px;">It strikes me how there is no word to describe the many, like my wife, who have been ill and disabled for decades, 20, 30 years and more.</span><br style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;" /><br style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;" /><span style="-webkit-text-size-adjust: auto; background-color: white; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px;">What word could possibly expresses the death and breath of their suffering, their catastrophic losses, the appalling devastation of their life?</span><br style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;" /><br style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;" /><span style="-webkit-text-size-adjust: auto; background-color: white; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px;">A term like the “long term sick” is a hopelessly inadequate representation of the dire situation they are in.</span><br style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;" /><br style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;" /><span style="-webkit-text-size-adjust: auto; background-color: white; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px;">Add to that the extra burden many are forced to endure of being saddled for years with a vague diagnosis that has no boundary to safely define it, nor accurate physiological explanation or respect and you have “absent citizens” thousands, maybe millions strong, who knows, hidden in plain sight, thoroughly invisible.</span><br style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;" /><br style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;" /><span style="-webkit-text-size-adjust: auto; background-color: white; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px;">There is much awareness these days about the power of stereotypes reinforcing biased beliefs.</span><br style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;" /><br style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;" /><span style="-webkit-text-size-adjust: auto; background-color: white; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px;">What stereotypes, what biases, do terms like the “long term sick”, the “long term disabled”, the “bed bound”, the “house bound” conjure up about people? </span><br style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;" /><br style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;" /><span style="-webkit-text-size-adjust: auto; background-color: white; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px;">What about the life wrecking invisible disabilities on top, like noise, light, touch and perfume sensitivity, cognitive dysfunction?</span><br style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;" /><br style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;" /><span style="-webkit-text-size-adjust: auto; background-color: white; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px;">When there aren’t words to describe the level of suffering, when you are disbelieved, it adds to an increasing burden of difficulty on top of an impossible to endure life.</span><br style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;" /><br style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;" /><span style="-webkit-text-size-adjust: auto; background-color: white; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px;">In this context language is so important. </span><br style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;" /><br style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;" /><span style="-webkit-text-size-adjust: auto; background-color: white; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px;">Surely it is time to reflect on accurate, recognisable , validating words to describe profound suffering and just what it takes to endure it.</span><br style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;" /><br style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;" /><span style="-webkit-text-size-adjust: auto; background-color: white; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px;">A few years ago the psychiatric literature was very vocal about being on the side of the “poor” doctor and their “heart sink” patients, for whom they can do nothing.</span><br style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;" /><br style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;" /><span style="-webkit-text-size-adjust: auto; background-color: white; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px;">How many desperately ill people, as a result, have internalised this and applied it to themselves, as being some kind of annoying, time waster, not worthy of the doctor’s time? </span><br style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;" /><br style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;" /><span style="-webkit-text-size-adjust: auto; background-color: white; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px;">Stereotypes are so powerful in society, it would be difficult, actually not to.</span><br style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;" /><br style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;" /><span style="-webkit-text-size-adjust: auto; background-color: white; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px;">How many friends and family buy into it too?</span><br style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;" /><br style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;" /><span style="-webkit-text-size-adjust: auto; background-color: white; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px;">How much does the whole of society buy into it?</span><br style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;" /><br style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;" /><span style="-webkit-text-size-adjust: auto; background-color: white; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px;">But you don’t have to.</span><br style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;" /><br style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;" /><span style="-webkit-text-size-adjust: auto; background-color: white; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px;">I quoted Linda yesterday, how even if it seems impossible, still you can believe in yourself, still you can trust yourself, still you can make your life happen and with dignity still you can move forwards, into the next moment, into the future.</span><br style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;" /><br style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;" /><span style="-webkit-text-size-adjust: auto; background-color: white; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px;">What struck me so much watching the recent Channel Four feature on Merryn Croft , was how she and Kara Jane Spencer, also much missed, exemplified this.</span><br style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;" /><br style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;" /><span style="-webkit-text-size-adjust: auto; background-color: white; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px;">In their short lives they reached out with extraordinary courage, love, compassion and nobility, bringing hope to the world, powerfully raising awareness of the need for a change in attitude, provision and understanding, inspiring everyone of us.</span><br style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;" /><br style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;" /><span style="-webkit-text-size-adjust: auto; background-color: white; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px;">As we say on Stonebird every life is precious and every life matters. This should be reflected in how we speak of the very ill.</span><span style="-webkit-text-size-adjust: auto; background-color: white; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px;"> </span><div class="blogger-post-footer">Stonebird : the lived experience
of Severe Myalgic Encephalomyelitis (ME)
www.stonebird.co.uk</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4744427773401707938.post-18516275933867826132024-02-20T04:15:00.000-08:002024-02-20T04:15:34.832-08:00Very Severe ME : still a neglected illness.<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYylHCQqG4b7G_YV_doBgcngS9If5PnApiGpZEpYW4Drl1vHdLU5Sz4eTJV1Lb1clabgc_TWG9P3ssK3-tBdv2PmEaZ7gwAdMFWF7d0rFYmcPnN2ZjtcS73lDZXQmKfsKpRgIgtDJ29zJmKwMUkk9z5LOxFKY-W17lDHRfCNtY7c0soKR_NqNKC9RDtCI/s2048/IMG_4387.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="2048" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYylHCQqG4b7G_YV_doBgcngS9If5PnApiGpZEpYW4Drl1vHdLU5Sz4eTJV1Lb1clabgc_TWG9P3ssK3-tBdv2PmEaZ7gwAdMFWF7d0rFYmcPnN2ZjtcS73lDZXQmKfsKpRgIgtDJ29zJmKwMUkk9z5LOxFKY-W17lDHRfCNtY7c0soKR_NqNKC9RDtCI/s320/IMG_4387.jpeg" width="320" /></a></div><br /><div><br /></div><div><br /></div>We are deeply moved to see this video of Channel 4 news interviewing Merryn Croft’s Mum about the true reality of severe ME.<div><a href="https://www.youtube.com/watch?app=desktop&v=pobf0RPlJuw&fbclid=IwAR1RsCDMhiCK3ephcQvVIilyXqC11bDtKPL04JyCYhjB_bZAV5VU2kihrmg">https://www.youtube.com/watch?app=desktop&v=pobf0RPlJuw&fbclid=IwAR1RsCDMhiCK3ephcQvVIilyXqC11bDtKPL04JyCYhjB_bZAV5VU2kihrmg</a><p></p></div><div><br /></div><div>We are reminded how important it is to get accurate information out into the world about this devastating illness that destroys lives.</div><div>Here is a review and links to Gregs free booklet on the shocking history of ME and the psychiatric misdirection of a physical disease.</div><div><br /></div><div><a href="https://www.positivehealth.com/review/strait-jacketed-by-empty-air?fbclid=IwAR3yHdxeb9NYnS12GBnV7seZR3q1doDZNp2ejmBjyy4vhNYd6cP2CxKjgmY">https://www.positivehealth.com/review/strait-jacketed-by-empty-air?fbclid=IwAR3yHdxeb9NYnS12GBnV7seZR3q1doDZNp2ejmBjyy4vhNYd6cP2CxKjgmY</a></div><div class="blogger-post-footer">Stonebird : the lived experience
of Severe Myalgic Encephalomyelitis (ME)
www.stonebird.co.uk</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4744427773401707938.post-33327256598454075502024-02-19T04:45:00.000-08:002024-02-19T04:45:58.786-08:00What It Takes<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0Sr-yzFZOLr5AonjSGlxsyX-W5C6hGTX7dMKubiK7hpX3i9ghLbm8Phh-LdykVCNhshlZW7YtA4CkkDhdJ5oHyc15NdfAKPlSreWUK7QPDg7tH-qpGR3W6w77XPElLRvbOHFLcoCyrOI-1sjfDxFSVjYQN4Foytd3jIdsdI6EIcjZdccd1ZyKLuox8dI/s1280/IMG_4356.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="1280" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0Sr-yzFZOLr5AonjSGlxsyX-W5C6hGTX7dMKubiK7hpX3i9ghLbm8Phh-LdykVCNhshlZW7YtA4CkkDhdJ5oHyc15NdfAKPlSreWUK7QPDg7tH-qpGR3W6w77XPElLRvbOHFLcoCyrOI-1sjfDxFSVjYQN4Foytd3jIdsdI6EIcjZdccd1ZyKLuox8dI/s320/IMG_4356.jpeg" width="320" /></a></div><br /><p><br /></p><p> <span style="-webkit-text-size-adjust: auto; caret-color: rgb(5, 5, 5); color: #050505; font-family: inherit; font-size: 15px; white-space: pre-wrap;">WHAT IT TAKES</span></p><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">This getting older….</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">I could barely walk after cycling yesterday, my right leg seemed to be in permanent cramp all day. It made for an uncomfortable night. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;"><span style="animation-name: none !important; font-family: inherit; transition-property: none !important;"><a style="animation-name: none !important; color: #385898; cursor: pointer; font-family: inherit; transition-property: none !important;" tabindex="-1"></a></span>However it’s okay, I think so anyway, this morning.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Thank God. For the impact upon us, me not able to easily do what I normally do, was quite devastating. We tread a very fine line here.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Little do people know what it takes.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Sometimes I watch those videos that urban climbers post on YouTube of themselves scaling up the side of skyscrapers, hanging only by their fingers and toes, hundreds of feet high, on flimsy looking window frames.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">It’s even worse when they release one hand to make a phone call, or remove a shirt.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">There’s a polish climber, Marcin Banot, who talks you through his process as he climbs for charity, in particular, the courage, the focus, the discipline and the terrific attention to breathing required.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Well, my hopes of ever doing that are far behind me now, as yesterday shows. In any case, Linda would be horrified. However it strikes me how perfect is the analogy.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Perilously hanging, without support, over a vast drop, is exactly the terrifying situation we are in, living in the context of severe, little understood illness. The danger of falling is ever present and massive. There is no rest, no relent ever. The pressure is intense. The courage and the effort to hold on, particularly for Linda, is way beyond comprehension, no one could possibly imagine just what it takes for her to cope, every moment of every day and still keep any shred of herself going.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Without discipline, without constant focus, without an immensely strong set of values, we would fall off the precipice into an unending pit of despair, hopelessness and unimaginable pain.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">We totally rely on each other to stay safe. As I wrote here yesterday, you must keep looking up.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">For that is where hope and new possibility lie.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Without unbelievable courage, especially on Linda’s part, we would freeze and not keep trying to climb, inch by tortuous inch, ever higher above the suffering. And we have climbed very high indeed this last three decades.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Courage is so desperately needed in the world right now. Both of us are immensely humbled by and this morning salute the courage of Alexei Navalny. May he inspire us all.</div></div><div class="blogger-post-footer">Stonebird : the lived experience
of Severe Myalgic Encephalomyelitis (ME)
www.stonebird.co.uk</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4744427773401707938.post-50767393772045127192024-02-19T04:44:00.000-08:002024-02-19T04:44:20.169-08:00Resilience<p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9S6Vpa3HisPcunnKnNe-xWMp7uDS8g-nNAvbZZA3Nsz4klBzV8-yJ07QCQa1Xc6QrMzxRdJRHOd-BXrveF03cCDxAZxWIDXm1Ml_-juyIRlASNy-ibQXkzx6hQytyHi0qiBoBTQR5zVNDhFQ36IgqierffjXfCAz4yyoXu-t5r1CKFeBUURLTpvoTJZ4/s2048/IMG_4355.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1536" data-original-width="2048" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9S6Vpa3HisPcunnKnNe-xWMp7uDS8g-nNAvbZZA3Nsz4klBzV8-yJ07QCQa1Xc6QrMzxRdJRHOd-BXrveF03cCDxAZxWIDXm1Ml_-juyIRlASNy-ibQXkzx6hQytyHi0qiBoBTQR5zVNDhFQ36IgqierffjXfCAz4yyoXu-t5r1CKFeBUURLTpvoTJZ4/s320/IMG_4355.jpeg" width="320" /></a></div><br /><p></p><p><span style="-webkit-text-size-adjust: auto; caret-color: rgb(5, 5, 5); color: #050505; font-family: inherit; font-size: 15px; white-space: pre-wrap;">RESILIENCE</span></p><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Holding on to something good and clawing your way towards it. That’s how Linda described resilience yesterday, struggling in bed, in immense agony, when I asked her.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">She spoke about the destruction of illness….but still building a life for yourself. I wish I could remember all she said.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">I <span style="animation-name: none !important; font-family: inherit; transition-property: none !important;"><a style="animation-name: none !important; color: #385898; cursor: pointer; font-family: inherit; transition-property: none !important;" tabindex="-1"></a></span>did make a note of this though:</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">“Seek in yourself until you find it, you can’t just pull yourself together. You have to find your own innate well spring of goodness, love, something that will keep you going against all the odds.”</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">I write this because that much loved, ancient symbol of resilience, the daffodil, is flowering, right now in our garden. I am a hungry man, all this harrowing winter I have been longing for its appearance.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">I wonder how others would describe “resilience “ in the face of long term, chronic, severe illness and disability?</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Surely not in terms of “well, pull yourself together, change your thoughts and just get on with it, won’t you?”, which is probably how the rest of the world, who don’t want to know, sees it.</div></div><div class="blogger-post-footer">Stonebird : the lived experience
of Severe Myalgic Encephalomyelitis (ME)
www.stonebird.co.uk</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4744427773401707938.post-56020740026733924452024-01-12T01:32:00.000-08:002024-01-12T01:32:54.925-08:00Our Story Must Be Told Too<p></p><div class="xdj266r x11i5rnm xat24cr x1mh8g0r x1vvkbs x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7a9-_AG21UK2K78TweqEyWUPnDZC1Y0438Z5PgHp8zLVLu5_J25SYZECrNXQJ3BVUbggXX5CIjomvDE6r2cOhAvVxi-ui1OCrA3sl1Zh-JpOakR_E_mpzFDe4a7Y95UFFCu6pAOU7CD7Qe4_IGihTC9yalwbk6d_IDsdkJDCB7ZfgbCXVTfNSFWr5gQM/s1190/IMG_3494.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1190" data-original-width="1080" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7a9-_AG21UK2K78TweqEyWUPnDZC1Y0438Z5PgHp8zLVLu5_J25SYZECrNXQJ3BVUbggXX5CIjomvDE6r2cOhAvVxi-ui1OCrA3sl1Zh-JpOakR_E_mpzFDe4a7Y95UFFCu6pAOU7CD7Qe4_IGihTC9yalwbk6d_IDsdkJDCB7ZfgbCXVTfNSFWr5gQM/s320/IMG_3494.jpeg" width="290" /></a></div><br /><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;"><br /></div><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;"><br /></div><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;">OUR STORY MUST BE TOLD TOO</div><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;">Greg Crowhurst, January 2024</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;"> I am unsettled, as many are, by the terrible injustice experienced by the Post Office staff and their long fight for justice, mostly invisible and unheard, for two decades. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;">As I watched ITV’s “Mr Bates versus the Post Office” it awoke all the pain and despair of the decades of denial and neglect we have suffered and continue to suffer, since my wife was diagnosed with Myalgic Encephalomyelitis (ME). </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;"> Just over three decades ago, newly married, my wife’s health deteriorated so badly that she rapidly became house and bed bound, paralysed repeatedly, in unimaginable agony. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;">Yet rather than appropriate medical support, validation, full investigation and treatment, doctors “believed” there was nothing much the matter with her, leaving us for decades to get on with the ruins of our life, desperately moving across the country to seek medical help and understanding that was just not there.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;"> The losses, we and numerous others have experienced, are so many they would be impossible to include here. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;">The lack of respect and the mistreatment that my wife has endured in the past has been devastating, however it is par for the course to be left in limbo land for decades, without answers or treatments.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;"> One expects proper, adequate medical information, support and treatment from the NHS. Sadly the opposite is true for people labelled with the term now used, “ME/CFS”, more often misdescribed as CFS/ME or just CFS. The ‘F’ stands for fatigue and that fatigue was interpreted as having little to no basis in terms of physiology. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;"> Initially Myalgic Encephalomyelitis, which can occur in epidemic form, was taken seriously, by the UK Government, that is until psychiatry became involved. Their doctrine, which neatly fitted the agenda of the medical insurance industry, that ME is a form of “hysteria” due to “misguided thinking” rapidly gained acceptance as medical orthodoxy, even though there was not a single shred of evidence that ME, classified in 1969 by the World Health Organisation as a physical disease, was a mental health issue. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;"> (I have detailed the psychiatric involvement in ME here : <span style="animation-name: none; font-family: inherit; transition-property: none;"><a class="x1i10hfl xjbqb8w x6umtig x1b1mbwd xaqea5y xav7gou x9f619 x1ypdohk xt0psk2 xe8uvvx xdj266r x11i5rnm xat24cr x1mh8g0r xexx8yu x4uap5 x18d9i69 xkhd6sd x16tdsg8 x1hl2dhg xggy1nq x1a2a7pz xt0b8zv x1fey0fg" href="https://l.facebook.com/l.php?u=https%3A%2F%2Fwww.stonebird.co.uk%2Femptyair%2Fsj.pdf%3Ffbclid%3DIwAR3HZxcsXvo9GX2Ox_1b67XcaIrZExQbZPnKlYj1h93mp-zj8IlyBQEtzqI&h=AT2IyNnQ9ZLLt_Q7dxjXSsnmPvsmPbknkIc7TcewxYJk3K-URU3XeJjmKnk9caFItHSawNdrzTijdq7i1EDyq5dqW4-b5dw0_SyWQcX6NFJl_GajxNijBdv4BuL40e1RTBa8-wuS1g&__tn__=-UK-R&c[0]=AT1Qmm9O1eDhjoDqDaonAw_MNfHjaQztgGCwKTZJpibrfoObvWvELEhkHTF_udAoPbXMfCmlkGujbilxjKZbKtSC2mr4SyNKBed1TI25pfQ6J488U-bTGcJb1EXAXtE-n_LvzXUVh1OV35Bwxj6F8bid6sM" rel="nofollow noreferrer" role="link" style="-webkit-tap-highlight-color: transparent; animation-name: none; border-color: currentcolor; border-style: none; border-width: 0px; box-sizing: border-box; color: #050505; cursor: pointer; display: inline; font-family: inherit; list-style: none; margin: 0px; outline: currentcolor; padding: 0px; text-align: inherit; text-decoration: none; touch-action: manipulation; transition-property: none;" tabindex="0" target="_blank">https://www.stonebird.co.uk/emptyair/sj.pdf</a></span>) </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;"> Hence the refusal of my wife’s GP, thirty years ago, to believe she was physically ill. Oh, if only he had! Our life would have been very different. This, like the experience of the Post Office employees, is hard to fathom and understand. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;"> Ignoring the fact that people with ME are as functionally impaired as those suffering from diabetes, heart failure and kidney disease and as severely disabled as those with late-stage AIDS, Multiple Sclerosis or a those undergoing chemotherapy, psychiatry attempted for more than thirty years to deny the symptoms and pathology by : </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;"> 1.Trying to bury the disease under a meaningless classification of “ fatigue”. The name was even changed to the almost meaningless label Chronic Fatigue Syndrome ( CFS. ) The specific links to Polio and an enterovirus were also buried with this wider misinterpretation and misdirection. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;"> 2. Aggressively seeking to classify those who have an ME Diagnosis as mentally ill, interpreted as victims of misguided thinking or hysteria. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;"> 3. Burying the genuine ME patient in a sea of poorly diagnosed diseases or mental health conditions. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;"> 4. Forcibly removing patients, such as Sophia Mirza, the first person for whom ME was recorded as an official cause of death, against their will, from their homes and consigning them to psychiatric institutions with tragic and fatal consequences or labelling parents who cared for their sick children as having Munchausen Syndrome By Proxy in order to discredit and blame them for making or keeping their children ill. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;"> 5. Encouraging the proscription of tests that might help identify physical illness, leaving patients misinterpreted, mistreated, misrepresented, misunderstood, neglected or harmed, with no hope of appropriate biomedical pathway or hope of safe diagnosis and medical respect for decades once labelled. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;"> After decades of struggle by patients, the psychiatric lobby has at last been rightly discredited to some extent, but not enough. Their influence over decades is still palpable in primary and secondary care.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;"> There is still a lack of accurate definition and distinction between genuine patients with Myalgic Encephalomyelitis and other patients with fatigue based illnesses or rare diseases not adequately tested for or diagnosed accurately. So how can any research ever be accurate or successful?</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;"> There is still no real hope of safe treatment pathways. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;"> There is still an alarming lack of awareness, among professionals, of the seriousness of the disease. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;"> There is still not an appropriate understanding of ME’s pathology and its specific individual system dysfunction. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;"> So patients are still at risk of mistreatment, misinterpretation and serious harm and neglect. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;"> No one has been held to account for the decades of needless suffering, the countless wrecked lives, the many deaths, the persecution, the despair, the suicides, the lies, the deliberate ignorance, the lack of hope of medical treatment, engendered by psychiatry. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;"> As a full time unpaid carer, with a profoundly disabled wife, I fought as hard as I could. I represented the most severely ill in Parliament. I learned how to code, so that I could launch Stonebird in 2006, a website dedicated to Severe ME, I wrote books on how to care for the most severely affected. In 2015 I was awarded third place Nurse of the Year, for my services to ME advocacy. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;"> My focus, now we are “retired”, has had to shift from advocacy to trying to maintain some semblance of a life together, even if I have little idea how to get through what we have to get through every moment of every day, the symptom onslaught is so terrible and never ending….. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;"> ‘Mr Bates Versus the post Office’ was unbearably difficult to watch, yet ultimately inspiring, for it shows how truth and the strength of the human spirit will prevail, against all the odds; we have always held onto that belief. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;">How on earth did we ever manage to fight back at all? </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;"> Unlike the Post Office Workers, the most ill, confined to darkened rooms, could not possibly travel to a village hall in the middle of England and there form a campaign group. They are far too weak and ill to leave their beds and interact in any remotely normal way with the world. The internet, for those that can use it, has been an invaluable source of connection, but mostly the severely affected lead invisible, isolated lives for decades on end.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;"> There are many untold David/Goliath stories. Despite requiring around the clock care and being confined to his bedroom in Australia, Alem Matthees, for example, managed to launch a successful legal complaint in 2016 that paved the way for the recent NICE Guideline and its breakthrough rejection of Graded Exercise Therapy, the key psychiatric intervention. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;"> But patients still suffer without any suitable treatment, still turn, in desperation to clinicians who do not know how to help them and still die horrendously painful deaths. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;"> How do you compare one suffering with another? You cannot and I am not. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;">What I do know is that people with ME have surely endured one of the greatest medical scandals ever. Recognition of this is long overdue.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;">All I can say is that as I watched “Mr Bates versus the Post Office” from the wreckage of our broken dreams and shattered hopes, my heart broke all over again. Our story must be told too.</div></div><div class="blogger-post-footer">Stonebird : the lived experience
of Severe Myalgic Encephalomyelitis (ME)
www.stonebird.co.uk</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4744427773401707938.post-43480297033745336912023-11-29T12:41:00.000-08:002023-11-29T12:41:47.943-08:00Partnership<p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpUs7FgqjXVPWep-zgHJ-ezpVyUA6xgxGrbIeki3Sc3aLtJIfr9e46TFDvx33s2yxLnmutHl53lPTNtDs5mPB4kWTvXY8raYw6nNl0D5gWrMhhxYWLj4dr2rcw5ePVlBo6_9k7NIzf5VqXo0NrV1hJotqWZlX5ej-c4_e3HlyTsutXiCVtnax_te8flKk/s1205/IMG_3040.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1205" data-original-width="1080" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpUs7FgqjXVPWep-zgHJ-ezpVyUA6xgxGrbIeki3Sc3aLtJIfr9e46TFDvx33s2yxLnmutHl53lPTNtDs5mPB4kWTvXY8raYw6nNl0D5gWrMhhxYWLj4dr2rcw5ePVlBo6_9k7NIzf5VqXo0NrV1hJotqWZlX5ej-c4_e3HlyTsutXiCVtnax_te8flKk/s320/IMG_3040.jpeg" width="287" /></a></div><br /><p></p><div class="xdj266r x11i5rnm xat24cr x1mh8g0r x1vvkbs x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">FREE-BURNING</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">That’s how I describe the nightmare, when her agony and all her symptoms are firing out of control and you feel so helpless. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Which is most of the time.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Most <span style="animation-name: none !important; font-family: inherit; transition-property: none !important;"><a style="animation-name: none !important; color: #385898; cursor: pointer; font-family: inherit; transition-property: none !important;" tabindex="-1"></a></span>of the time she is unable to tolerate anything.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Most of the time her broken body is screaming on the edge of existence.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Most of the time her experience is one of sheer, brutal torture.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">So, how does one respond?</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">As I see and experience it, there’s at least four possibilities.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">One is RESENTMENT:</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Being pissed off because there’s so much else that you would rather be doing, consider yourself entitled to be doing. After all, this is your life too, why should you give it all up for her? If only she would pull herself together, isn’t that what sick people should be made to do? How unfair it is to be stuck in the house all day with someone who can’t do anything, go anywhere, who’s tormented by every sound and movement. Best leave her to get on with it by herself, there’s nothing anyone can do anyway to make it better.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Two is ANGER:</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Who does she think she is? How can she be so selfish and self-absorbed? How can she be this ill and never get better? Isn’t she trying hard enough? What did I do to deserve this? I am out of my depth here. She really winds me up, the way she reacts just to me being around. She brings out the worst in me. She’s screaming, I am shouting, she can’t cope, well neither can I. I’ve just about had enough of this. I’m off, I’m withdrawing, I’m lashing back.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Three is SORROW:</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">The losses are massive, they mount up over weeks, months years, so what do they do over decades? They become too huge to deal with, too entrenched to sometimes even recognise. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">They can easily spill over into a "poor me" attitude that still somehow blames the person for everything that is gone, the broken hopes and dreams, the ordinary life that might have been. The invisibility of the carer experience reinforces the losses and the poverty of experience. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">But how do you express the infinite sorrow without being drowned in never ending tears and grief? Unexpressed sorrow can lead to despair and ineffectiveness in your role.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Any of the above three positions lead ultimately to estrangement, lack of connection and cold, authoritarian postures and behaviours that limit the relationship and the effectiveness of caring interactions. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">All these and there are many more, are reactive responses to stressful situations.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Four is PARTNERSHIP:</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">We continually work things out together. We know very well the useless, stuck games people play, the ever present danger, in any moment, of playing the victim or being the persecutor. I know this both from personal and professional experience.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Partnership is the intention to enhance each other’s life as much as possible, given the ongoing severity of illness and the limitations set by it. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Its aim is to find peaceful flowing moments of connection that reach beyond or through the illness, to touch each other’s life with goodness.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Based on respect and relationship, partnership is a mutually rewarding experience, because it is concerned not with exerting power over the other, but with fostering the enormous power available within, to help each other cope, to get through each moment and more than this, to flow together and grow as people. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Partnership relies on dialogue, communication, listening, hearing and seeing the other person Its aim is to reach a consensus, to understand, as much as possible, the impossibly complex issues.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Partnership is an iron-clad, rock solid determination to work things out together.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Partnership is an ongoing commitment to never walk away, to never neglect the other, to never give up, to never stop learning, to grow together. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Partnership is an open heart.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Partnership is mutual compassion, sensitivity, valuing and respect. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Partnership is openness, acceptance, warmth, focus and attention. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Partnership, above all is a choice. It is your choice to provide care for the one you love, even if, sometimes, it might feel more of an obligation, an expectation, a chore and a heartache.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">These issues have to be negotiated together, for partnership is only ever possible, in all my experience, through understanding and a willingness to keep caring. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">It is a living, dynamic relationship, a dance. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Partnership is moving through all moments, happy and painful, seeking the best one to engage in the right way.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Partnership is to touch a joy that is much, much bigger than any limitation, circumstance or deprivation. The last thirty years of us finding a way through together, has taught me that.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Greg and Linda Crowhurst (c) 2023</div></div><div class="blogger-post-footer">Stonebird : the lived experience
of Severe Myalgic Encephalomyelitis (ME)
www.stonebird.co.uk</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4744427773401707938.post-88723589694595848762023-11-24T03:32:00.000-08:002023-11-24T03:32:30.555-08:00Five Non- negotiable Rules for Caring<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCJkdPCoyfYlnPgPt0SCEa69b2lQTUfL2NIuVJ-N7XvrSCN8R-g4clYJT90_D0Xor_yw0hPzWKNZbSj7BPNHSv0ZyB7HRVmbniLvI8bAZLzbfWL4v6QCqvBcTlHe_9Jld4u8XP5S67kRaj1mXnqd_RAT_LMyZDConJyKZTWfH_k_UK7ucUWuCCCt-7_vI/s1024/IMG_2936.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="768" data-original-width="1024" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCJkdPCoyfYlnPgPt0SCEa69b2lQTUfL2NIuVJ-N7XvrSCN8R-g4clYJT90_D0Xor_yw0hPzWKNZbSj7BPNHSv0ZyB7HRVmbniLvI8bAZLzbfWL4v6QCqvBcTlHe_9Jld4u8XP5S67kRaj1mXnqd_RAT_LMyZDConJyKZTWfH_k_UK7ucUWuCCCt-7_vI/s320/IMG_2936.jpeg" width="320" /></a></div><br /><span style="-webkit-text-size-adjust: auto; caret-color: rgb(5, 5, 5); color: #050505; font-family: inherit; font-size: 15px; white-space: pre-wrap;"><br /></span><p></p><p><span style="-webkit-text-size-adjust: auto; caret-color: rgb(5, 5, 5); color: #050505; font-family: inherit; font-size: 15px; white-space: pre-wrap;">FIVE NON-NEGOTIABLE RULES WHEN CARING FOR SOMEONE IN SEVERE PAIN WITH PROFOUND HYPERSENSITIVITIES</span></p><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Every noise, every movement, every action that you make, <span style="animation-name: none !important; font-family: inherit; transition-property: none !important;"><a style="animation-name: none !important; color: #385898; cursor: pointer; font-family: inherit; transition-property: none !important;" tabindex="-1"></a></span>matters more than you will ever be able to fully understand, never forget this.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Always strive to provide the very best care that you can. Learn as much as you can about the person’s symptoms, about how severe each symptom is and, in particular, about how much worse the person’s experience can so easily become, if you are not careful enough, moment by moment.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">When you help someone who is unable to communicate easily, in severe pain with complex hypersensitivities, then the following, really, is non-negotiable, it is that serious:</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">1. Do exactly as you are asked, at the exact time that you are asked to do it, in the exact way that you are asked to do it. It is alarmingly easy to get this wrong! </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">2. Do maintain a strong awareness which enables you to see clearly under pressure and understand any difficulties the person might be having with the way you are interacting. Again, easier said than done. In practice, without sufficient awareness, one can so easily take it personally, slip into the hopeless, destructive role of Victim, Persecutor, Rescuer.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">3. Do not blame the person, if you get it wrong or if they are unable to tolerate your presence at any given moment. Stand back, wait until any interaction or intervention is tolerable or acceptable to them. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">4. Do not presume that because something seems quick, simple and easy to do that the person you want to help can equally tolerate it. The simplest activity like walking past someone, opening or closing a cupboard, reaching out to grab something, can trigger a literal explosion of cognitive dysfunction, confusion, exhaustion , weakness and massively increased pain, paralysis.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;"> There are so many aspects to an action that you may not notice or be aware of yourself, which will be painfully obvious to the person and may be impacting them negatively. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">5. Do not be complacent about the impact of your presence. Understand that the environment, itself and you, yourself, within that environment are constantly, invisibly impacting the person, even if you are not noticing it.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Every action, movement, sound, change, that you make can be a positive, neutral or negative experience for the person. Never lose sight of this. As we stressed at the beginning of this article, keep developing your awareness as much as you can, it is crucial.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;"> Learn and grow together.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Greg and Linda Crowhurst</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">For much more information please see :</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">MORE NOTES FOR CARERS : <span style="animation-name: none !important; font-family: inherit; transition-property: none !important;"><a class="x1i10hfl xjbqb8w x6umtig x1b1mbwd xaqea5y xav7gou x9f619 x1ypdohk xt0psk2 xe8uvvx xdj266r x11i5rnm xat24cr x1mh8g0r xexx8yu x4uap5 x18d9i69 xkhd6sd x16tdsg8 x1hl2dhg xggy1nq x1a2a7pz xt0b8zv x1fey0fg" href="https://l.facebook.com/l.php?u=https%3A%2F%2Fstonebird.co.uk%2Fmorenotes%2Findex.html%3Ffbclid%3DIwAR0DGI2xTEvpgKDJmKq1EG_C2zFigSiz1zVITNcCkFp9J1A7WkTYXH_-iKU&h=AT2bHbUBa33WpeWId18CVds9BlhtNNrjP4dAww1wjLRtFvQ7G92onJY_snCSzr4XpBhBQyII_e2Iq1GISv-b-CPWePvRttqLubGt6JgnAz8ziijVWCRYdN0DaSZasZ2J3eRvxyf1ng&__tn__=-UK-y-R&c[0]=AT3dn-I1KVxSVcAruk3uXxxZYDhle9oukL--2OgAKku5PfUSpTEShfOQKP3jhgV_caTgeVLiEsb07mZoP-D0-u6vcDBybHD1ytu2PtQQCxG7p9vEvhvDhhmfprBIZYj8ebBY4nkmj49SfoiiEH6bhyi7zsQezj9ntv_g4eHxd987M40elrx-_MGEu4FfYc4qHqkmpqj7yT0" rel="nofollow noreferrer" role="link" style="-webkit-tap-highlight-color: transparent; animation-name: none !important; border-color: currentcolor; border-style: none; border-width: 0px; box-sizing: border-box; color: #050505; cursor: pointer; display: inline; font-family: inherit; list-style: none; margin: 0px; outline: currentcolor; padding: 0px; text-align: inherit; text-decoration: none; touch-action: manipulation; transition-property: none !important;" tabindex="0" target="_blank">https://stonebird.co.uk/morenotes/index.html</a></span></div></div><div class="blogger-post-footer">Stonebird : the lived experience
of Severe Myalgic Encephalomyelitis (ME)
www.stonebird.co.uk</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4744427773401707938.post-35095634201252869692023-11-23T16:41:00.000-08:002023-11-23T16:43:04.521-08:00No Way to Live<p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDpnjQtLYYYrZwi7bR6ZRV0LQWXU5qxB0-bO_rRQa7e_u6iBbsk_RjFFOhjm3W_wy79sdl45KFb84U0hjIIUbcvYjlmj6MeoDQ82P3csmqjCkOf795O0uNGIKoiTvYDvTBrXBd-XzZPPDsYJfnte70zb0Z9bRL2xrxYtLcM1xg2Pa7xIs3JnjUqmx8Zss/s1280/IMG_2935.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="1280" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDpnjQtLYYYrZwi7bR6ZRV0LQWXU5qxB0-bO_rRQa7e_u6iBbsk_RjFFOhjm3W_wy79sdl45KFb84U0hjIIUbcvYjlmj6MeoDQ82P3csmqjCkOf795O0uNGIKoiTvYDvTBrXBd-XzZPPDsYJfnte70zb0Z9bRL2xrxYtLcM1xg2Pa7xIs3JnjUqmx8Zss/s320/IMG_2935.jpeg" width="320" /></a></div><br /><p></p><p><span style="-webkit-text-size-adjust: auto; caret-color: rgb(5, 5, 5); color: #050505; font-family: inherit; font-size: 15px; white-space: pre-wrap;">NO WAY TO LIVE</span></p><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;">It has to be the most heartbreaking place imaginable. Those who suffer from profound hypersensitivities on multiple levels, endure <span style="animation-name: none; font-family: inherit; transition-property: none;"><a style="animation-name: none; color: #385898; cursor: pointer; font-family: inherit; transition-property: none;" tabindex="-1"></a></span>indescribable suffering.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;">It is no way to live. It is no way to have a mutually enjoyable relationship or any relationship at all with other people. It is no way to feel comfortable, safe or equal in the world.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;">How do you convey to someone who does not notice, how much they smell and what a massive risk that poses to the person who suffers from Perfume Sensitivity ?</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;">How do you convey the extreme pain that flicking a light switch on can cause to someone with Light Sensitivity ?</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;">How do you begin to explain the dire torment of noise sensitivity, which makes going out into the world very challenging or even impossible?</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;"> For a person with Touch Sensitivity the slightest pressure can feel like a heavy weight and be intolerable. Clothing, bedding, personal contact of any description, may be agonising.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;">How can people remain in loving or social contact in such circumstances? It leads to a sense of feeling that other people simply do not care enough to ‘get it’ or make enough effort to understand. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;">What do you do if the person’s paralysis, multiple hypersensitivities are so profound that they cannot bear any touch? </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;">How do they get medical tests done? Blood samples taken? Intimate care needs met? </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;">What if they cannot even bear your presence in the room, because of their acute hypersensitivities? What then? How do you provide care? How do you show affection or give comfort? It is a truly difficult position to be in. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;">How can the person not feel broken and invisible to others, who simply cannot or will not comply with or truly comprehend the need to be aware and take care?</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;">The experience of having multiple hypersensitivities leads to a continuous and massive sense of alienation. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;">For those enforced to live like this for decades, never finding alleviation, nor comprehension of their devastating experience, every day’s experience is compounded by all that has gone before. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;">They literally can go nowhere safely or have visitors in their house safely. All of this has been hugely compounded by the pandemic.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;">The person does not then just carry the pain and difficulties, the reactivity and complexity of the moment, but all the pain and separation collected from every moment, from every painful interaction, from every denial of their reality, which adds up over decades to mountains of neglect and isolation on every level, too huge to describe, too vast to contain. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;"><span style="font-size: 15px;">A</span><span style="font-size: large;">dapted from More Notes For Carers <span style="animation-name: none; font-family: inherit; transition-property: none;"><a class="x1i10hfl xjbqb8w x6umtig x1b1mbwd xaqea5y xav7gou x9f619 x1ypdohk xt0psk2 xe8uvvx xdj266r x11i5rnm xat24cr x1mh8g0r xexx8yu x4uap5 x18d9i69 xkhd6sd x16tdsg8 x1hl2dhg xggy1nq x1a2a7pz xt0b8zv x1fey0fg" href="https://l.facebook.com/l.php?u=https%3A%2F%2Fstonebird.co.uk%2Fmorenotes%2Findex.html%3Ffbclid%3DIwAR3dtVwz-YG91_zwKKzcLeB_v5sVjlDQGlxj_jAGfj0OPcMDlrny8fdu_lE&h=AT3cXQozwIly-PMUuwxlNDTbz6iICrXNggqXIhtVgA5GPSi8rVIi69sRoaC8cXwesNDwbIx13OIT5fOjIewlCKYVaRUKdvGUVDn4H48UnLF2dvfJB43hJw2-PnsHmAyOOska6t6uHw&__tn__=-UK-y-R&c[0]=AT10KqOu6baxJnTCcVgmSwCl5D3jc8I1Kcj3Wxc1enAg4Xxvz8nc2ivNc9LrLYs2cwkB_N5139Ae60h1GP44lpEZHh48PezTpPmvFyDxAKOXE-OJ1KjBaHuaqq1BJtZRqeXMmxfBUwe8SKcfSj1B8wnmMU1iwD6NfrNZt9x9i-nReYsAhyThAS42oMvzAw2zGJKwzNjSVqM" rel="nofollow noreferrer" role="link" style="-webkit-tap-highlight-color: transparent; animation-name: none; border-color: currentcolor; border-style: none; border-width: 0px; box-sizing: border-box; color: #050505; cursor: pointer; display: inline; font-family: inherit; list-style: none; margin: 0px; outline: currentcolor; padding: 0px; text-align: inherit; text-decoration: none; touch-action: manipulation; transition-property: none;" tabindex="0" target="_blank">https://stonebird.co.uk/morenotes/index.html</a></span></span></div></div><div class="blogger-post-footer">Stonebird : the lived experience
of Severe Myalgic Encephalomyelitis (ME)
www.stonebird.co.uk</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4744427773401707938.post-89674264733946568372023-11-23T02:04:00.000-08:002023-11-23T02:04:38.620-08:00Curious<p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifMb-8BaoIVYq8MzFleY3N5oiHTt8vn3JsJW3yVpwpOEw-7vdG8r3VPhAcHv9BdFUO8I6k6FeQyaloYwdNRfmVqFM0wRrRv6x2kVpF96IiRbqMFJx6Pj2pJbX94gFKt668461LSfCScjBye0Sn_6-buFYhj_F1kPyfOZnfO6MbDL8IUDGVVKbDwpOCXqU/s1000/IMG_2934.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1000" data-original-width="707" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifMb-8BaoIVYq8MzFleY3N5oiHTt8vn3JsJW3yVpwpOEw-7vdG8r3VPhAcHv9BdFUO8I6k6FeQyaloYwdNRfmVqFM0wRrRv6x2kVpF96IiRbqMFJx6Pj2pJbX94gFKt668461LSfCScjBye0Sn_6-buFYhj_F1kPyfOZnfO6MbDL8IUDGVVKbDwpOCXqU/s320/IMG_2934.jpeg" width="226" /></a></div><br /><p></p><p><span style="-webkit-text-size-adjust: auto; caret-color: rgb(5, 5, 5); color: #050505; font-family: inherit; font-size: 15px; white-space: pre-wrap;"><br /></span></p><p><span style="-webkit-text-size-adjust: auto; caret-color: rgb(5, 5, 5); color: #050505; font-family: inherit; font-size: 15px; white-space: pre-wrap;">HOW CURIOUS</span></p><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">That when a well person, who lives in the ordinary world, asks you about how you are and you, at great effort, write back and tell them, that <span style="animation-name: none !important; font-family: inherit; transition-property: none !important;"><a style="animation-name: none !important; color: #385898; cursor: pointer; font-family: inherit; transition-property: none !important;" tabindex="-1"></a></span>almost inevitably, it seems, they do not reply. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">The other puzzling thing they do is say: “hope you are well”.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Have they missed the many, many years of devastating destruction and horrendous illness and symptom experience that means you can never say you are well?</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Wellness is a far distant memory.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">These two things have happened to us so often, down all these decades of severe illness and isolation, that I am beginning to wonder if it might be some kind of phenomena.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">It seems to be left to those who are the most sick to share kindness, empathy and support to others who are suffering.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">I wonder has anyone else experienced it, the curious, or should I say, the rude silence or the inappropriate superficial, general, throwaway query?</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">I can’t figure it out.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Why ask in the first place, if you don’t really want to know?</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Maybe it’s just that people don’t know how to reply. What on earth can you say anyway, the situation is so awful?</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Yet, if only they had some inkling, what an incredible difference it makes, to feel heard.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">And how extraordinarily negating it is, given the context, to say nothing.</div></div><div class="blogger-post-footer">Stonebird : the lived experience
of Severe Myalgic Encephalomyelitis (ME)
www.stonebird.co.uk</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4744427773401707938.post-86188893320670660862023-11-23T02:03:00.000-08:002023-11-23T02:03:30.632-08:00Nowhere So Lonely<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcGoSgYf3TTZp9XLZOE8_6GZR4tnbMg6zqJdyzn30GWQnxnAdax6yU_jnqNu_6Jjc_bve18lXoPukUAPcIBcekZU9MjC4ELYrD2rsrOZQuWoKACeAhWTQ4TSI3TvG4_Uki_dqxi04NdHORckMHSWohuRX-XexvXSOyaPfRiuIyjnaTcbKW2RZsLEoOeRA/s1280/IMG_2933.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="1280" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcGoSgYf3TTZp9XLZOE8_6GZR4tnbMg6zqJdyzn30GWQnxnAdax6yU_jnqNu_6Jjc_bve18lXoPukUAPcIBcekZU9MjC4ELYrD2rsrOZQuWoKACeAhWTQ4TSI3TvG4_Uki_dqxi04NdHORckMHSWohuRX-XexvXSOyaPfRiuIyjnaTcbKW2RZsLEoOeRA/s320/IMG_2933.jpeg" width="320" /></a></div><br /><span style="-webkit-text-size-adjust: auto; caret-color: rgb(5, 5, 5); color: #050505; font-family: inherit; font-size: 15px; white-space: pre-wrap;"><br /></span><p></p><p><span style="-webkit-text-size-adjust: auto; caret-color: rgb(5, 5, 5); color: #050505; font-family: inherit; font-size: 15px; white-space: pre-wrap;">THERE IS NOWHERE SO LONELY</span></p><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">As the silence, broken only by her occasional sob of agony, fades to dusk</div><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">And all her hopes,</div><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">So tiny they would break your heart, </div><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Lie <span style="animation-name: none !important; font-family: inherit; transition-property: none !important;"><a style="animation-name: none !important; color: #385898; cursor: pointer; font-family: inherit; transition-property: none !important;" tabindex="-1"></a></span>crumbling on the floor.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">There is nowhere so lonely</div><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">As the bleakness </div><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">When you make things worse,</div><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Much, much worse,</div><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">By your attempt to help. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">There is nowhere so lonely</div><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">As the dark room</div><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">And the cluttered settee</div><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Upon which she sits slumped and paralysed</div><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Her whole life long.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Greg Crowhurst</div></div><div class="blogger-post-footer">Stonebird : the lived experience
of Severe Myalgic Encephalomyelitis (ME)
www.stonebird.co.uk</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4744427773401707938.post-87349441878009923372023-11-11T05:56:00.006-08:002023-11-11T05:58:53.512-08:00Noise Sensitivity<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZdIGi2zponAPpEBOYs_73vtWAKtRJnDdIGbgxvKWmdtk0o1KbCSyt5QPyJ4xb_nb0gY5rCUeDmFtj8FeIAJHpBQryFhwU8KhR4q94FQnnwvGoDCruxCGV7E6oSxV3zAZJa4Qcwj3ySCHIG5x12-ZuomdKS_Jr6Rj7pD3tqsjdflDD0mLdTysy1et10qc/s1024/IMG_2857.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="768" data-original-width="1024" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZdIGi2zponAPpEBOYs_73vtWAKtRJnDdIGbgxvKWmdtk0o1KbCSyt5QPyJ4xb_nb0gY5rCUeDmFtj8FeIAJHpBQryFhwU8KhR4q94FQnnwvGoDCruxCGV7E6oSxV3zAZJa4Qcwj3ySCHIG5x12-ZuomdKS_Jr6Rj7pD3tqsjdflDD0mLdTysy1et10qc/s320/IMG_2857.jpeg" width="320" /></a></div><br /><p><br /></p><p> <span style="-webkit-text-size-adjust: auto; caret-color: rgb(5, 5, 5); color: #050505; font-family: inherit; font-size: 15px; white-space: pre-wrap;">NOISE SENSITIVITY </span><span style="caret-color: rgb(5, 5, 5); color: #050505; font-family: inherit; font-size: 15px; white-space: pre-wrap;">: it has to be one of your worst nightmares, with no physiological explanation, little understanding, immense difficulty with interaction on every level and no easy solutions other than to withdraw from contact. </span></p><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;">It is, by far, one of the most difficult challenges we face as a couple. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;">It <span style="animation-name: none; font-family: inherit; transition-property: none;"><a style="animation-name: none; color: #385898; cursor: pointer; font-family: inherit; transition-property: none;" tabindex="-1"></a></span>is heartbreakingly hard to recognise how catastrophic the slightest unexpected sound or movement can be: how, in an awful instant, the person you love and care for can be plunged into a tormented, screaming, agonising chasm, that can last for hours, days, years even.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;"> The torment is indescribable. People may experience it to different degrees. Some can use ear defenders or ear plugs to partially protect themselves. Others may simply not be able to tolerate the pain and pressure of using them. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;">Massive sensitivity is required. Even the sound of your breath can be too loud, your sudden cough annihilating. Just your walking into the room can torment and cause unimaginable suffering, or even the unconscious action of scratching your head, or clicking your finger nails at the wrong, or any, moment. Your clothes may be too noisy, depending on the material.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;">It really matters that you are very careful in all you do, especially when it comes to being with someone who is severely ill, with complex hypersensitivities.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;"><span style="font-size: 15px;">(</span><span style="font-size: large;">Adapated from More Notes For Carers <span style="animation-name: none; font-family: inherit; transition-property: none;"><a class="x1i10hfl xjbqb8w x6umtig x1b1mbwd xaqea5y xav7gou x9f619 x1ypdohk xt0psk2 xe8uvvx xdj266r x11i5rnm xat24cr x1mh8g0r xexx8yu x4uap5 x18d9i69 xkhd6sd x16tdsg8 x1hl2dhg xggy1nq x1a2a7pz xt0b8zv x1fey0fg" href="https://l.facebook.com/l.php?u=https%3A%2F%2Fstonebird.co.uk%2Fmorenotes%2Findex.html%3Ffbclid%3DIwAR0-m_Fa8zaeF-VfU8OSJbwo-OamaeBFUQzG_dH8FgSSgMnPOo4zWhHVEXg&h=AT0Who48BSDSyFRYN5h9tI7K78Q08O6Ih7-NcjBDxUplNM67Gp5FY0sCDt2FH_OT0keJGMdyPWlZoAeZYoUDtjRCFoGcMkG9TmNtTcEHJsHDldZoZYtSfBq9aErP8rkd1oTtMFAL7A&__tn__=-UK-R&c[0]=AT3KIGuAfIlwv7cw4Wd1p4a7Sqex_F99xVnmU-HDQGk4jAtO_VcnOqXMi70oGyGgEgfWfYrSbhYb60ecrCSLD7AD6M25K2XxxhKDFa3b1qip4y4mixKLlDEtNe8VcnzLCtSC9DbPwt4wZwb00JaJl-9nswJX2fcmGEs1SdbLvaXZyG4UjXwYew" rel="nofollow noreferrer" role="link" style="-webkit-tap-highlight-color: transparent; animation-name: none; border-color: currentcolor; border-style: none; border-width: 0px; box-sizing: border-box; color: var(--blue-link); cursor: pointer; display: inline; font-family: inherit; list-style: none; margin: 0px; outline: currentcolor; padding: 0px; text-align: inherit; text-decoration: none; touch-action: manipulation; transition-property: none;" tabindex="0" target="_blank">https://stonebird.co.uk/morenotes/index.html</a></span>)</span></div></div><div class="blogger-post-footer">Stonebird : the lived experience
of Severe Myalgic Encephalomyelitis (ME)
www.stonebird.co.uk</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4744427773401707938.post-16949629772610674052023-11-04T04:30:00.004-07:002023-11-04T04:30:33.494-07:00Unsupported and Unrecognised<p> <span style="-webkit-text-size-adjust: auto; caret-color: rgb(5, 5, 5); color: #050505; font-family: inherit; font-size: 15px; white-space: pre-wrap;">UNSUPPORTED and UNRECOGNISED</span></p><div class="xdj266r x11i5rnm xat24cr x1mh8g0r x1vvkbs x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">The vast majority of carers here in the U.K., are at breaking point, are struggling with “very bad mental health problems”, are feeling hopeless, despairing, tearful, even suicidal, according to the latest Carers UK Report, please see below.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">As if we didn’t know that.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;"><span style="animation-name: none !important; font-family: inherit; transition-property: none !important;"><a style="animation-name: none !important; color: #385898; cursor: pointer; font-family: inherit; transition-property: none !important;" tabindex="-1"></a></span>Unsupported, unrecognised , they struggle to carry on.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Same old, same old.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Every single year that I have been a full time Carer, that’s thirty now, a very similar “State of Caring” report is released. Not one has made a difference to my life, as far as I know.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijUmDDxC4GF1SVTQ2XJ4ysP3RfNA-4G7bwl6JMphh2rItE-O-ZwOAOY4mJVyujTW2E3EEEPtei2IPTxXs9AP4P9QWceVY4Zc25LagGftsvX0cZCNgp98fhDo-CP8KeGrolNHKHi19Wvel4Y4IK9oeY2sWk2ntoBwc5EnTfEMwcmU3uhHRgP6eXQY_peaA/s1080/IMG_2789.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1080" data-original-width="1080" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijUmDDxC4GF1SVTQ2XJ4ysP3RfNA-4G7bwl6JMphh2rItE-O-ZwOAOY4mJVyujTW2E3EEEPtei2IPTxXs9AP4P9QWceVY4Zc25LagGftsvX0cZCNgp98fhDo-CP8KeGrolNHKHi19Wvel4Y4IK9oeY2sWk2ntoBwc5EnTfEMwcmU3uhHRgP6eXQY_peaA/s320/IMG_2789.jpeg" width="320" /></a></div><br /><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;"><br /></div><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;"><br /></div><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Pay carers at least the minimum wage, provide truly independent support and counselling , maybe find a way to tap into the wisdom and insights us older, long term careers have gained, to help others navigate their way through, offer opportunities for lifelong learning and development, this is absolutely vital, give us all the equipment we need……….everyone knows what is needed.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">But no one ever does anything about it. Apart from write reports it seems. And either patronise or clientise us.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">I have been forced to live in poverty on less than £1.00 an hour, I have been forced to seek out financial grants and charity just to pay for basics.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Our faith has helped us survive. One of the most noticeable statistics about this Report, for me, is how few carers faith organisations are reaching, barely 4%. Our Church does not reach out to us. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;"><span style="animation-name: none !important; font-family: inherit; transition-property: none !important;"><a class="x1i10hfl xjbqb8w x6umtig x1b1mbwd xaqea5y xav7gou x9f619 x1ypdohk xt0psk2 xe8uvvx xdj266r x11i5rnm xat24cr x1mh8g0r xexx8yu x4uap5 x18d9i69 xkhd6sd x16tdsg8 x1hl2dhg xggy1nq x1a2a7pz xt0b8zv x1fey0fg" href="https://l.facebook.com/l.php?u=https%3A%2F%2Fwww.carersuk.org%2Fpolicy-and-research%2Fstate-of-caring-survey%2F%3Ffbclid%3DIwAR3UKpro7s7PIZPhiE44egWv-Sli1e1_EZree5VSSx-7uBZEV7SNnf1vRUs&h=AT0mzNbTBN1FOasan73rT-zSdxO1oBEobNYE6r3l6qjaav1NjTr77nnH1AjJ82S-8GJ9hyTigDA1cCIPuRbuqcCyGcxo0KjSMiLz0TRpVqYE1BFS7F3Rx6LbRpeBRvtE8BywWpmnvA&__tn__=-UK-R&c[0]=AT0IkgYPtL6Am5_gJq7_Y3ZRCgCEH0HOoD5axWDwm2UMaPCDDr_oiFxxjSfDH9J4fY8FA32pBXWKQ7a0XpqIPLAbtQl2Dyh2XqaAQ5Vhy1Ds8zsbNPxzFTzilQzwmakuvAni413bZ0rkQHomDh9jtfwkBoSBayyImJAY4Bti1PN2SGVXyIkgtg" rel="nofollow noreferrer" role="link" style="-webkit-tap-highlight-color: transparent; animation-name: none !important; border-color: currentcolor; border-style: none; border-width: 0px; box-sizing: border-box; color: var(--blue-link); cursor: pointer; display: inline; font-family: inherit; list-style: none; margin: 0px; outline: currentcolor; padding: 0px; text-align: inherit; text-decoration: none; touch-action: manipulation; transition-property: none !important;" tabindex="0" target="_blank">https://www.carersuk.org/policy.../state-of-caring-survey/</a></span></div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Incredibly, despite everything the carers in this report are determined to carry on. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Me too.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Good thing, for without us the Health, Social and Economic system would collapse. We are the unknown support holding the whole thing together.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">I choose to be with my wife, I choose to help her, as she helps me, far more, I choose to live in the power of our marriage, in the power of love. I choose, every day to step up, to be present, to keep growing and learning, to find meaning and hope, I choose to touch the joy and indescribable fulfilment found in stillness and being. I choose to do all I can can to be present to bring life in every moment, I humbly accept that I have such a long way to go yet.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">What an extraordinary privilege that is.</div><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;"><br /></div></div><div class="blogger-post-footer">Stonebird : the lived experience
of Severe Myalgic Encephalomyelitis (ME)
www.stonebird.co.uk</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4744427773401707938.post-36467936271892151102023-10-30T11:35:00.001-07:002023-10-30T11:35:28.960-07:00Breathing<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0ONKfTwZiL0PZaS7X6K98ZqnQUqo1z2d4f6eTofLRuLC8ieCR9iyLvx0FNQvBhovhuObg16oR-keHEMMuEmj5HUL3EGxVuzk_QukQHdtAdJAXezNqGU4BCF4O_xKxslVqYn7yAJWf0Un3ErtuxXx1ZgZWb154cYliVErjiPfjqQT4Olk3nI5q5lSaHXA/s4000/P1090387.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3000" data-original-width="4000" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0ONKfTwZiL0PZaS7X6K98ZqnQUqo1z2d4f6eTofLRuLC8ieCR9iyLvx0FNQvBhovhuObg16oR-keHEMMuEmj5HUL3EGxVuzk_QukQHdtAdJAXezNqGU4BCF4O_xKxslVqYn7yAJWf0Un3ErtuxXx1ZgZWb154cYliVErjiPfjqQT4Olk3nI5q5lSaHXA/s320/P1090387.jpeg" width="320" /></a></div><br /><span style="-webkit-text-size-adjust: auto; caret-color: rgb(5, 5, 5); color: #050505; font-family: inherit; font-size: 15px; white-space: pre-wrap;"><br /></span><p></p><p><span style="-webkit-text-size-adjust: auto; caret-color: rgb(5, 5, 5); color: #050505; font-family: inherit; font-size: 15px; white-space: pre-wrap;">Breathing is such a natural part of life that the well person would not necessarily notice that they were doing it.</span></p><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">For the severely ill person breathing is not that simple. Breathing can be a daily struggle; nothing , in this situation, can be taken for granted.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">The carer too struggles for breath, to breathe life into the day, to find new pathways, to keep hope alive. To face each impossible challenge.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;"><span style="animation-name: none !important; font-family: inherit; transition-property: none !important;"><a style="animation-name: none !important; color: #385898; cursor: pointer; font-family: inherit; transition-property: none !important;" tabindex="-1"></a></span>Almost inevitably we find ourselves knocked down time and again, and, in that moment, all feels lost. It’s a terrible place to be.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">The miracle is that time and time again we find the courage to pick our shattered selves up and, no matter what, make the choice to live our life.</div></div><div class="blogger-post-footer">Stonebird : the lived experience
of Severe Myalgic Encephalomyelitis (ME)
www.stonebird.co.uk</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4744427773401707938.post-8019252577857402142023-10-28T10:50:00.006-07:002023-10-28T10:52:34.162-07:00The MOMENT APPROACH<p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgujmV2G_f2SETrwklOFLfpWAcVIDpT5sJqVPmDmt2VLZNaNs_kyN3BEds9FY6v4RXeC3WXIO4aMqRcxwfA_CbEnbUbhr9dnJJQoO9DI2cmYohAt69u-6uJYeZc1KcDX0S5xD33z8OW4xMaSsK-tMvwWYeAdQlIme0DCavAS1iEnhzY7Va_DlG3VToD7No/s1024/IMG_2723.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="768" data-original-width="1024" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgujmV2G_f2SETrwklOFLfpWAcVIDpT5sJqVPmDmt2VLZNaNs_kyN3BEds9FY6v4RXeC3WXIO4aMqRcxwfA_CbEnbUbhr9dnJJQoO9DI2cmYohAt69u-6uJYeZc1KcDX0S5xD33z8OW4xMaSsK-tMvwWYeAdQlIme0DCavAS1iEnhzY7Va_DlG3VToD7No/s320/IMG_2723.jpeg" width="320" /></a></div><br /><p></p><p><span style="-webkit-text-size-adjust: auto; caret-color: rgb(5, 5, 5); color: #050505; font-family: inherit; font-size: 15px; white-space: pre-wrap;">All our experience, two decades of living with and caring for someone diagnosed with Very Severe ME and extreme, complex hypersensitivities, finds expression in what we have termed the Moment Approach.</span></p><p><span style="-webkit-text-size-adjust: auto; caret-color: rgb(5, 5, 5); color: #050505; font-family: inherit; font-size: 15px; white-space: pre-wrap;"> I first outlined the approach in a nursing article that went on to be recommended by NICE in its 2007 Guideline. </span></p><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none; white-space: pre-wrap;"><div dir="auto" style="animation-name: none; font-family: inherit; transition-property: none;"><span style="animation-name: none; font-family: inherit; transition-property: none;"><a class="x1i10hfl xjbqb8w x6umtig x1b1mbwd xaqea5y xav7gou x9f619 x1ypdohk xt0psk2 xe8uvvx xdj266r x11i5rnm xat24cr x1mh8g0r xexx8yu x4uap5 x18d9i69 xkhd6sd x16tdsg8 x1hl2dhg xggy1nq x1a2a7pz xt0b8zv x1fey0fg" href="https://l.facebook.com/l.php?u=http%3A%2F%2Fwww.stonebird.co.uk%2Fmoment.pdf%3Ffbclid%3DIwAR3YZkxj19JIxQZAHpedvlZRpt8dFKol-uvAc4YgNyPwITiTiGHU0Qms9Hs&h=AT3arc9-dFFZzCtMjEwqohD1D22J9Dp2fYaM7m-isWUu1icCRhfrQAJyyn_ayCfMM-R7-Wokcj6aIPknwEtBy23T083XhFyQrRD4qZOJEPmCp7tuyMO8vfDMxumR0x07Au6FsCH-cg&__tn__=-UKH-R&c[0]=AT208PzOu9n_w8L1DHUtFJWl-utrq9rrzOHK8qIPFj8CFoPLU2jjQIu-DVg4zHuaeKcBLwzAyLNybLYUVwaWY2kNIIERk_AHeKetomKQrWA4U69ruIxV_g78h7d-9cXwoDbCJSSXNWLCY3_xjmw0s7jHENaBMQD2VZDoShYzSzmRX48F413pLxmryVDWhm-xOLpEKNMXDg" rel="nofollow noreferrer" role="link" style="-webkit-tap-highlight-color: transparent; animation-name: none; border-color: currentcolor; border-style: none; border-width: 0px; box-sizing: border-box; color: var(--blue-link); cursor: pointer; display: inline; font-family: inherit; list-style: none; margin: 0px; outline: currentcolor; padding: 0px; text-align: inherit; text-decoration: none; touch-action: manipulation; transition-property: none;" tabindex="0" target="_blank">http://www.stonebird.co.uk/moment.pdf</a></span></div></div><div class="blogger-post-footer">Stonebird : the lived experience
of Severe Myalgic Encephalomyelitis (ME)
www.stonebird.co.uk</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4744427773401707938.post-31569070495537210412023-10-28T10:48:00.005-07:002023-10-28T10:48:56.043-07:00Perseverance and Endurance<p> </p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPY336LF-rbWwQ1DRUwU_1_mzYehyphenhyphenEoGrS1wJim-LGX2TrKMAkTLEw3UQbrBB6o9UexJYUvo-7P5P8P4aTeRuSPT0hb8Axv7EUWLAKh15p1JUq5hp2X0zriDpWJF1SOrd7hpuvFmhEfR85ghxvN6AagC9jhGuxIwd6Vy2Lg6BE6Y4aFpwNGxa-NvFlvSg/s1000/IMG_2722.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1000" data-original-width="758" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPY336LF-rbWwQ1DRUwU_1_mzYehyphenhyphenEoGrS1wJim-LGX2TrKMAkTLEw3UQbrBB6o9UexJYUvo-7P5P8P4aTeRuSPT0hb8Axv7EUWLAKh15p1JUq5hp2X0zriDpWJF1SOrd7hpuvFmhEfR85ghxvN6AagC9jhGuxIwd6Vy2Lg6BE6Y4aFpwNGxa-NvFlvSg/s320/IMG_2722.jpeg" width="243" /></a></div><br /><span style="-webkit-text-size-adjust: auto; font-family: inherit; white-space: pre-wrap;"><br /></span><p></p><p><span style="-webkit-text-size-adjust: auto; font-family: inherit; white-space: pre-wrap;">PERSEVERANCE AND ENDURANCE</span></p><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; font-family: inherit; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Impossible struggle forces you to ask “what really matters?”</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; font-family: inherit; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Right now is an extraordinarily worrying and disconcerting time on so many levels. On a personal level I am struggling with not being fit and well in my body.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; font-family: inherit; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">My <span style="animation-name: none !important; font-family: inherit; transition-property: none !important;"><a style="animation-name: none !important; color: #385898; cursor: pointer; font-family: inherit; transition-property: none !important;" tabindex="-1"></a></span>wife, reflecting upon her deep suffering writes so wisely:</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; font-family: inherit; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">“My world, so empty of business, </div><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">becomes a place of waiting, seeking inner peace and understanding.</div><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">The things I know are hard won amidst the decades of intense suffering.</div><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">The emptiness of action, is replaced by the stillness of pure being.”</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; font-family: inherit; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">“Stillness of pure being” ………….</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; font-family: inherit; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">How could anyone, apart from those who have experienced profound pain and the loss of ability on every conceivable level, begin to even grasp what “stillness of pure being” means?</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; font-family: inherit; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">I’ve gained some kind of insight, but frustratingly my words are clumsy. I just don’t have the vocabulary.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; font-family: inherit; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Nonetheless, what matters especially now, I think, is the courage to step up, to deal with what needs dealing with.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; font-family: inherit; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">That, however, as my wife shows, takes the most extraordinary strength, perseverance and endurance:</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; font-family: inherit; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Strength that comes from character.</div><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Perseverance that comes from the never ending struggle to carry on.</div><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Endurance that comes from Spirit.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; font-family: inherit; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">It’s the latter that astonishes me most about my wife. I just don’t know how she manages to endure at all.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; font-family: inherit; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Only that she describes it as “Grace”.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; font-family: inherit; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Grace, surely, is what the whole world is crying out for, as never before.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; font-family: inherit; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Perhaps we need to look for lived humility and grace, not in the mainstream, not in celebrity, not in institutions, not in the ignorance of others, but in those who endure the greatest suffering without end, where the only choice is to seek something beyond or within the suffering.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; font-family: inherit; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"><div dir="auto" style="animation-name: none !important; font-family: inherit; transition-property: none !important;">Some place where you can find the grace to survive.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="-webkit-text-size-adjust: auto; animation-name: none !important; font-family: inherit; margin: 0.5em 0px 0px; overflow-wrap: break-word; transition-property: none !important; white-space: pre-wrap;"></div><br class="Apple-interchange-newline" style="-webkit-text-size-adjust: auto;" /><div class="blogger-post-footer">Stonebird : the lived experience
of Severe Myalgic Encephalomyelitis (ME)
www.stonebird.co.uk</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4744427773401707938.post-43598951029043192492023-10-28T10:46:00.004-07:002023-10-28T10:46:41.610-07:00Grief and survival<p><span style="-webkit-text-size-adjust: auto; background-color: white; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px;"><br /></span></p><p><span style="-webkit-text-size-adjust: auto; background-color: white; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px;"></span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJ1rggr5zVanyLqnlD1mgpKxIGK57Hiap5_74beParrwZfRcVDyMKE2xPgiQhIXG6Z5AFxtZWr_0IaNLSGDilWVSbtQss_NYH9UiClWhPj_0NY8gf-J3b9QGC4qQ6ixglWkGQJmAIc6Pl6FVztLNZb2_dxW80KzTIsHnS9LgthhbPQqJWcRdKdgY7bH5w/s1715/IMG_2721.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1415" data-original-width="1715" height="264" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJ1rggr5zVanyLqnlD1mgpKxIGK57Hiap5_74beParrwZfRcVDyMKE2xPgiQhIXG6Z5AFxtZWr_0IaNLSGDilWVSbtQss_NYH9UiClWhPj_0NY8gf-J3b9QGC4qQ6ixglWkGQJmAIc6Pl6FVztLNZb2_dxW80KzTIsHnS9LgthhbPQqJWcRdKdgY7bH5w/s320/IMG_2721.jpeg" width="320" /></a></div><br />Here I am learning about limits. I am learning about grief. I am learning about emotional survival. Here I cling on, feeling far out of reach, on a vicious distant edge, that few, if any, care to know about.<p></p><span style="-webkit-text-size-adjust: auto; background-color: white; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px;">There is no one to comfort or guide you.</span><br style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;" /><br style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;" /><span style="-webkit-text-size-adjust: auto; background-color: white; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px;">Suffering reeks of despair. It feels endless and hopeless. It is painful beyond description. </span><br style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;" /><br style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;" /><span style="-webkit-text-size-adjust: auto; background-color: white; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px;">Yet there is a pathway you must keep finding through it, in order to find meaning and restore hope. Otherwise the suffering will consume you - initially, if not long term - unless you can find a way to see all, including loss and grief, as a path and somehow find crucial self-support .</span><br style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;" /><br style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;" /><span style="-webkit-text-size-adjust: auto; background-color: white; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px;">Then you can find that it is possible to face your situation with dignity, you can find meaning and purpose, even in the most awful, indescribable circumstances and desolation even. </span><br style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;" /><br style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;" /><span style="-webkit-text-size-adjust: auto; background-color: white; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px;">(Adapted from "More Notes For Carers" </span><span style="-webkit-text-size-adjust: auto; animation-name: none !important; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none !important;"><a class="x1i10hfl xjbqb8w x6umtig x1b1mbwd xaqea5y xav7gou x9f619 x1ypdohk xt0psk2 xe8uvvx xdj266r x11i5rnm xat24cr x1mh8g0r xexx8yu x4uap5 x18d9i69 xkhd6sd x16tdsg8 x1hl2dhg xggy1nq x1a2a7pz xt0b8zv x1fey0fg" href="https://l.facebook.com/l.php?u=https%3A%2F%2Fstonebird.co.uk%2Fmorenotes%2Findex.html%3Ffbclid%3DIwAR1-btWiXAjj0iCuKJ2pXmvh1pmo5nEVW2DkTPJ20bdyIjVfMi68oKFWv2M&h=AT3FXxk-N3-bRhl1aM_RQoq4zdEU-KDZLQP9I7zesimLpAJwo9Twubv7vGyYuRt0bafoVIn8gAyRCY08BHEJOxAY8d5nlCRvDcuosV--hqisRXwipqc5TB7JaoQcc4ksbGLrLbYmgg&__tn__=-UK*F&c[0]=AT0qeO2WmNurXOBK1kz4PyCuUUZSHWuV0UI2dD3whuqIEWJ281yI8sGidae5OADndyC_xR0QDAWX0cxNBJpRUSzGeB5Xfz6moyZwnvOxO5z5dYq_Xwk1blhcIbXw2yHcut1s4W7evX2yuV7XtxzDF5iAJ6Lc27k15echIawtOhZcvsHYL-SJsg&c[1]=AT0qeO2WmNurXOBK1kz4PyCuUUZSHWuV0UI2dD3whuqIEWJ281yI8sGidae5OADndyC_xR0QDAWX0cxNBJpRUSzGeB5Xfz6moyZwnvOxO5z5dYq_Xwk1blhcIbXw2yHcut1s4W7evX2yuV7XtxzDF5iAJ6Lc27k15echIawtOhZcvsHYL-SJsg" rel="nofollow noreferrer" role="link" style="-webkit-tap-highlight-color: transparent; animation-name: none !important; border-color: currentcolor; border-style: none; border-width: 0px; box-sizing: border-box; color: var(--blue-link); cursor: pointer; display: inline; font-family: inherit; list-style: none; margin: 0px; outline: currentcolor; padding: 0px; text-align: inherit; text-decoration: none; touch-action: manipulation; transition-property: none !important;" tabindex="0" target="_blank">https://stonebird.co.uk/morenotes/index.html</a></span><span style="-webkit-text-size-adjust: auto; background-color: white; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px;">)</span><span style="-webkit-text-size-adjust: auto; background-color: white; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px;"></span><div class="x1i10hfl xjbqb8w x6umtig x1b1mbwd xaqea5y xav7gou x9f619 x1ypdohk xt0psk2 xe8uvvx xdj266r x11i5rnm xat24cr x1mh8g0r xexx8yu x4uap5 x18d9i69 xkhd6sd x16tdsg8 x1hl2dhg xggy1nq x1a2a7pz xt0b8zv xzsf02u x1s688f" role="button" style="-webkit-tap-highlight-color: transparent; -webkit-text-size-adjust: auto; animation-name: none !important; border-color: currentcolor; border-style: none; border-width: 0px; box-sizing: border-box; caret-color: rgb(5, 5, 5); color: #050505; cursor: pointer; display: inline; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; font-weight: 600; list-style: none; margin: 0px; outline: currentcolor; padding: 0px; touch-action: manipulation; transition-property: none !important;" tabindex="0">See less</div><div class="blogger-post-footer">Stonebird : the lived experience
of Severe Myalgic Encephalomyelitis (ME)
www.stonebird.co.uk</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4744427773401707938.post-69700297050096578352023-09-22T03:08:00.004-07:002023-09-22T03:09:57.073-07:00A NEW CARER THOUGHTS VIDEO ON VOCATION<p><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhATTYzr4jVoPyr_8KbBcilOJK1RiCU9ktHxb6z7TYVKXQco4Hivowb9fNRt9fb0v1P8JQ1n_9cDDT_vcW4kRC-bZpFRG1QvDv9t7rhuODGqbnjBnooiLf5-lfYRfH9c5eARWUYVEJPsNckcXF1hLc5nwZuSzsETLZoUgfpJDkv-0uMe9aMD_DjFwAdVmg/s1583/IMG_2370.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="844" data-original-width="1583" height="171" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhATTYzr4jVoPyr_8KbBcilOJK1RiCU9ktHxb6z7TYVKXQco4Hivowb9fNRt9fb0v1P8JQ1n_9cDDT_vcW4kRC-bZpFRG1QvDv9t7rhuODGqbnjBnooiLf5-lfYRfH9c5eARWUYVEJPsNckcXF1hLc5nwZuSzsETLZoUgfpJDkv-0uMe9aMD_DjFwAdVmg/s320/IMG_2370.jpeg" width="320" /></a></div><br /><p><br /></p><p> Here Greg speaks of the importance of vocation and the choices we make. Hoping it inspires and uplifts.</p><p style="font-family: Helvetica; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 12px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><a href="https://www.youtube.com/watch?v=YfyGDI1wl7s">https://www.youtube.com/watch?v=YfyGDI1wl7s</a></p><div class="blogger-post-footer">Stonebird : the lived experience
of Severe Myalgic Encephalomyelitis (ME)
www.stonebird.co.uk</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4744427773401707938.post-87187670832435244152023-09-22T03:06:00.005-07:002023-09-22T03:09:15.949-07:00A NEW CARER THOUGHTS VIDEO ON JOY<p><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiz9KAlM_mbPBxq5TktDLgMJ38wX-69jyKivKsJKL1hgmlL2pk4sUTsnNVh4qiwqY0sG3J9F0B_AxihBRciIJtAHwNhUOCxyYeL753OCKqBGXzzp5GqqSIsYpk6rcqVqeIIf0k5S6ymhZpSOeLdcOCl3C4sNkomD59pvcKOh9vfiRKuLF1tMlAcxjuDpeY/s2048/IMG_1903.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="2048" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiz9KAlM_mbPBxq5TktDLgMJ38wX-69jyKivKsJKL1hgmlL2pk4sUTsnNVh4qiwqY0sG3J9F0B_AxihBRciIJtAHwNhUOCxyYeL753OCKqBGXzzp5GqqSIsYpk6rcqVqeIIf0k5S6ymhZpSOeLdcOCl3C4sNkomD59pvcKOh9vfiRKuLF1tMlAcxjuDpeY/s320/IMG_1903.jpeg" width="320" /></a></div><p><br /></p><p>An uplifting video by Greg about Joy.</p><p><a href="https://www.youtube.com/watch?v=B27bjqe2KBc">https://www.youtube.com/watch?v=B27bjqe2KBc</a></p><p> <span face="system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif" style="-webkit-text-size-adjust: auto; caret-color: rgb(5, 5, 5); color: #050505; font-size: 15px; white-space: pre-wrap;">What is true joy? I think I have learned that it has a lot to do with caring in its widest sense:</span></p><div dir="auto" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none; white-space: pre-wrap;">Care for meaning</div><div dir="auto" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none; white-space: pre-wrap;">Care for dialogue</div><div dir="auto" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none; white-space: pre-wrap;">Care for interdependence</div><div dir="auto" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none; white-space: pre-wrap;">Care for growth</div><div dir="auto" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none; white-space: pre-wrap;">Care for yearning</div><div dir="auto" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none; white-space: pre-wrap;">Care for seeing with new eyes</div><div dir="auto" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none; white-space: pre-wrap;">Care for giving</div><div dir="auto" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none; white-space: pre-wrap;">Care for kindness</div><div dir="auto" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none; white-space: pre-wrap;">Care for generosity</div><div dir="auto" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none; white-space: pre-wrap;">Care for admiration</div><div dir="auto" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none; white-space: pre-wrap;">Care for awe</div><div dir="auto" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none; white-space: pre-wrap;">Care for commitment</div><div dir="auto" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none; white-space: pre-wrap;">Care for relationship</div><div dir="auto" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none; white-space: pre-wrap;">Care for partnership</div><div dir="auto" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none; white-space: pre-wrap;">Care for community</div><div dir="auto" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none; white-space: pre-wrap;">Care for belonging</div><div dir="auto" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none; white-space: pre-wrap;">Care for character</div><div dir="auto" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none; white-space: pre-wrap;">Care for courage</div><div dir="auto" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none; white-space: pre-wrap;">Care for choice</div><div dir="auto" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none; white-space: pre-wrap;">Care for freedom</div><div dir="auto" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none; white-space: pre-wrap;">Care for gratitude</div><div dir="auto" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none; white-space: pre-wrap;">Care for honour</div><div dir="auto" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none; white-space: pre-wrap;">Care for truth</div><div dir="auto" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none; white-space: pre-wrap;">Care for discernment</div><div dir="auto" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none; white-space: pre-wrap;">Care for wonder</div><div dir="auto" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none; white-space: pre-wrap;">Care for hearing</div><div dir="auto" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none; white-space: pre-wrap;">Care for seeing</div><div dir="auto" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none; white-space: pre-wrap;">Care for space </div><div dir="auto" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none; white-space: pre-wrap;">Care for the heart</div><div dir="auto" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none; white-space: pre-wrap;">Care for the soul</div><div dir="auto" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none; white-space: pre-wrap;">Care for virtue</div><div dir="auto" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none; white-space: pre-wrap;">Care for simplicity</div><div dir="auto" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none; white-space: pre-wrap;">Care for transformation</div><div dir="auto" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none; white-space: pre-wrap;">Care for reformation</div><div dir="auto" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none; white-space: pre-wrap;">Care for mystery</div><div dir="auto" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none; white-space: pre-wrap;">Care for service</div><div dir="auto" style="-webkit-text-size-adjust: auto; animation-name: none; caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; transition-property: none; white-space: pre-wrap;">Care for love, above all else</div><div class="blogger-post-footer">Stonebird : the lived experience
of Severe Myalgic Encephalomyelitis (ME)
www.stonebird.co.uk</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4744427773401707938.post-28575973841913627662023-08-15T09:25:00.001-07:002023-08-15T09:25:12.265-07:00New Video: Navigating the Road<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqsMUcVart0tYO-I0ZhSI4oBElVTQV9VVgBzwMs9eHCpq3MT6hjhgybGjIrgr_qvtJYpU6zqP-3uyuWBQR734oG-ihZZM7CpCBqXGyKRSlmm8uNeg9skFgALdp5dYs12_dM9mOfNC6wvZGs-krRIrBliuMqBuu2Gn001RTEqxlBeiCOgrX5MtSDyrOdx4/s2388/IMG_1858.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1668" data-original-width="2388" height="224" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqsMUcVart0tYO-I0ZhSI4oBElVTQV9VVgBzwMs9eHCpq3MT6hjhgybGjIrgr_qvtJYpU6zqP-3uyuWBQR734oG-ihZZM7CpCBqXGyKRSlmm8uNeg9skFgALdp5dYs12_dM9mOfNC6wvZGs-krRIrBliuMqBuu2Gn001RTEqxlBeiCOgrX5MtSDyrOdx4/s320/IMG_1858.png" width="320" /></a></div><p>Here is the latest Carer Thoughts Video.</p><p></p><p style="font-family: Helvetica; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 12px; font-stretch: normal; font-style: normal; font-variant-alternates: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><a href="https://m.youtube.com/watch?v=QX5bX4tJv6c&feature=youtu.be">https://m.youtube.com/watch?v=QX5bX4tJv6c&feature=youtu.be</a></p><p style="font-family: Helvetica; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 12px; font-stretch: normal; font-style: normal; font-variant-alternates: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><br /></p><p> </p><div class="blogger-post-footer">Stonebird : the lived experience
of Severe Myalgic Encephalomyelitis (ME)
www.stonebird.co.uk</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4744427773401707938.post-85015013321998388022023-08-14T04:23:00.001-07:002023-08-14T04:23:13.061-07:00New Video You are Precious<p><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBmvbwrSQCkkgpLhU12AA_urCrS8A4fuwQro8SiyYSNmOkNfv-J7kreiQeKWPJ2ZEll49N9Wx0TneQSGeT_l9IQgGFzDYYpidVTKkBKOaXjnyd2JhZG7nX3prmMwH3IPBrXkuOiIpWztaUSk2ov0rp3Uqlt8jODllEgqBaT9sFHni94qReBBsEjQ44DW0/s961/IMG_1851.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="573" data-original-width="961" height="191" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBmvbwrSQCkkgpLhU12AA_urCrS8A4fuwQro8SiyYSNmOkNfv-J7kreiQeKWPJ2ZEll49N9Wx0TneQSGeT_l9IQgGFzDYYpidVTKkBKOaXjnyd2JhZG7nX3prmMwH3IPBrXkuOiIpWztaUSk2ov0rp3Uqlt8jODllEgqBaT9sFHni94qReBBsEjQ44DW0/s320/IMG_1851.jpeg" width="320" /></a></div><br /><p>Here is the latest Carer Thoughts Video, sharing how everyone is precious and their presence matters.</p><p> <a href="https://www.youtube.com/watch?v=h0hKleMdVq4" style="font-family: Helvetica; font-size: 12px;">https://www.youtube.com/watch?v=h0hKleMdVq4</a>j</p><div class="blogger-post-footer">Stonebird : the lived experience
of Severe Myalgic Encephalomyelitis (ME)
www.stonebird.co.uk</div>Unknownnoreply@blogger.com0