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Showing posts from April, 2018

Walking Lightly : Understanding the Moment Approach, part 2

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Stonebird Understanding the Moment Approach, part 2 YOU NEED TO LEARN TO WALK LIGHTLY AND QUIETLY IN THE PRESENCE OF SOMEONE WITH SEVERE/VERY SEVERE ME.
Helping someone with Severe ME will probably throw up challenges to you. You may become aware of certain aspects of your personality that were not so evident till you were in a caring situation. Caring can be exhausting. It can also test your skill, knowledge and patience. People with Severe ME may have previously had bad experiences : ● They may have been disbelieved
● They may have had their symptoms denied.
● They may have been neglected.
● They may still be adjusting to being extremely severely ill. The symptoms of ME are hard to understand, it is crucial to know how imperative it is for the person to be believed, accepted, respected and to be appropriately supported ; TO BE SEEN AS A PERSON WITHIN THE CONTEXT OF SEVERE ILLNESS AND DISABILITY. You may long to help them but there are no easy solutions or quick fixes. Be wary of anybod…

MEETING NEED TENDERLY

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Understanding the Moment Approach Linda and Greg Crowhurst My wife, Linda, is unimaginably ill; I mean that. After all these years I just cannot imagine the agony she is in, when a thing like moving my thumb, or moving, speaking without thinking, is enough to utterly destroy her. The Moment Approach is not just some theory to me. Worked out over twenty five years of caring, it is a framework that I hold onto every day, literally like a drowning man - especially, when things are beyond tough. Without it I might despair. I tell you, brothers and sisters, by now the Moment Approach is deeply ingrained into my very soul; this is NOT head stuff! Consciously reminding myself of it, I find I am able to find a way through the most complicated and demanding situations, incredibly, in a gentle, kind, aware, loving, focused way. That may not sound that much on paper, but an approach like this, rooted in deep, life-bringing values, is profoundly healing, uplifting and liberating! So yes, the Momen…

SOPHIE COOKLYN : SEVERE TO VERY SEVERE M.E. IS NOT ‘JUST’ M.E. AND IT MUST BE TREATED DIFFERENTLY!

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Stonebird :  
A stunning overview not just of Severe ME but also of the toxic politics, the disbelief, the neglect and isolation that surrounds the disease and has been destroying lives for decades. Incredibly gripping, this article tell it, just like it is. That is exactly what we need! Written in the most powerful down-to-earth accessible way, Sophie's article has the potential to reach out to many; surely anyone, after reading her extraordinary account, would be much better educated about Myalgic Encephalomyelitis - and be deeply moved to take action! I am so proud to publish Sophie's brilliant article on Stonebird.
http://stonebird.co.uk/sophie/index.htm

13 MILLION, 148 THOUSAND 730 MINUTES OF MY PRECIOUS LIFE

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25 years of constant ongoing hellish pain that burns in the centre of your being 25 years of a never ending cycle of total paralysis, then partial paralysis, then total paralysis, again and again,for hours, days, years on end, endlessly streaming into infinity 25 years of numb face and limbs, feeling swollen, disconnected, disappeared as proprioception dissipates and I don’t know where my head, my face, my arm, my leg, begins or ends, where heat is cold and ice burns and nothing is felt properly or accurately 25 years of needing help to get my basic needs met, help that is still painful to receive, impossibly hard to access, desperately wanted, yet physically unbearable, despite gentleness, compassion and understanding 25 years of empty jelly muscles where strength and ability should exist 25 years of continuous head pain with intense agony beyond description on contact, and with any pressure whatsoever, so that sleep or rest or support are agony or impossible, no comfortable chair, n…

BRAIN FOG IN SEVERE / VERY SEVERE ME

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Stonebird

"Brain Fog" is such an inadequate term to describe the devastating Cognitive Dysfunction, people may suffer, in Severe/Very Severe ME.

Cognitive Dysfunction is a major, grossly misunderstood symptom !

People are likely to have MASSIVE problems with:

 Receiving information  Processing information Comprehending the content of conversation  Remembering names of people and the names of common things Forgetting information Forgetting what they are saying mid sentence  Not being able to articulate or speak the thought they have in their head  Having a completely blank mind : CAN YOU POSSIBLY IMAGINE WHAT THAT IS LIKE ? No, you can't.Loss of internal visual imagery  Spelling difficulties Mathematical difficultiesPoor short term memory  A disconnection between thought and action and thought and vision.  Using the completely wrong word even though the person knows what they want to say.Getting distracted by other thoughts and saying the wrong thing. External noise distu…

PAIN IN SEVERE/ VERY SEVERE ME

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Is like :
Being assaulted physically inside and outside in multiple ways all at the same time with no relief or escape. Having the blankest emptiest space in your head where everything beautiful, colourful, creative, every image, every comprehension , every hope, dream, expectation and every possibility is extinguished, except for the dark blank swirling pressure and piercing pain that tortures you. Having a knife twisted into the centre of your head whilst at the same time clashing pots and pans as loud as possible in your ears so that it jangles round your head for hours and hours and hours after every single noise has gone away, whilst having a massive heavy, hammer repeatedly hit against your head continuously so that you cannot think and you cannot escape and you cannot stop it and you cannot bear it but you have to endure it, with no alleviation or protection from it and no prediction of when it will increase and no knowledge if whether it will stop, going on seemingly endlessly…

PARALYSIS IN SEVERE/ VERY SEVERE ME

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Stonebird

Only yesterday I chinked a cup, by mistake; it plunged Linda into a paralysis that was still affecting her this morning.

It is very hard to understand how such a seemingly insignificant, action can have such horrendous impact, how it destroys everything in an instant, how it leaves Linda unable to move, to speak, blink, swallow or even tolerate my presence.

I cannot describe enough the awful "nothingness", the crushing disappointment of a day absolutely ruined.

If only I had been more aware, more careful......you beat yourself up.

The early literature on ME, by Acheson, Ramsay and others is replete with descriptions of paralysis, yet you are hard-pressed these days to find even any mention of this central symptom.

We conducted our own survey on Stonebird and received over 46 responses, all confirming varying degrees of paralysis.

http://www.stonebird.co.uk/Paralysis%20Study.pdf

The animated GIF below, describes Linda's experience of paralysis. It is quite horri…

PERFUME SENSITIVITY IN SEVERE/ VERY SEVERE ME

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Stonebird

Perfume Sensitivity makes an impossible life a nightmare. I have become very good at asking any tradesman who has to visit, not to wear any aftershave or perfumed product.

Not easy!

If someone pats our irresistibly cute Corgi, who goes around wagging his tail and making eyes at everyone, it's horrifying if they are wearing perfume. Hours of torment can follow.

The neighbour's washing, wafting waves of fabric conditioner across our garden, makes outside a no go area.

Letters and parcels are a huge problem; inevitably they smell of chemicals. Just the slightest whiff does immense harm. We have to be so careful, gloves and bags at hand.

We have not been able to find a mask that Linda can tolerate. One that we did order, from a so-called Eco store, had to be hung on the line for days, it smelt so much.

If I dare go anywhere, I need to shower and change very, very quickly.

The house badly needs decorating. We spent a fortune, £70 a can, on "Odour-free" paint, o…

MOVEMENT SENSITIVITY IN SEVERE/ VERY SEVERE ME

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Stonebird

The times I have scratched my head - and that movement, unbelievably, triggers a catastrophic reaction, plunging Linda shaking and descending into paralysis.

I have learned NEVER to walk past Linda, without warning and to NEVER, EVER walk behind her!

Movement Sensitivity, so hard to comprehend, is a major symptom, in our experience. Yet it is not often referred to.


LIGHT SENSITIVITY IN SEVERE/ VERY SEVERE ME

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Stonebird How natural is it to just switch on the light, without thinking? But how do you help someone, in the dark, who is hurt by, who cannot bear light? Have you ever experienced what it is like, sitting indoors, the beautiful day outside calling to you, in agony, with all the curtains tightly shut against the sunlight? We have had to spend a lot of money on fitting extra thick, sound-reducing curtains. Just the other evening I unthinkingly switched off a light without warning; it caused such unnecessary suffering. Light Sensitivity in Severe/Very Severe ME is a seriously challenging symptom; as in all areas of care a profoundly aware, sensitive, creative, gentle approach is required at ALL times. Always work WITH the person, as this animated GIF tries to show. Be aware there are contrasting colours.

TOUCH SENSITIVITY IN SEVERE/ VERY SEVERE ME

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Stonebird Often all there is left, is to try and gently touch or hold Linda when she cannot bear it for another moment. When I say "cannot bear it anymore", that is exactly what I mean; it takes a lot for her to get to that stage. She is in unbearable suffering all of the time. There is no treatment, there's not even any research we know off, here in the UK, into how treat the most severely affected. People are abandoned. But what if the pain, paralysis, multiple hypersensitivities are so profound that she cannot bear your touch? What if she can't even bear your presence in the room with her? What then? Touch Sensitivity, like Noise Sensitivity, is an incredibly difficult symptom to appreciate and understand. But get it wrong and you will easily inflict major, lasting harm. Touch Sensitivity : it has to be the most heartbreaking place imaginable:

NOISE SENSITIVITY IN SEVERE / VERY SEVERE ME

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Stonebird

One of the hardest symptoms to understand in Severe/Very Severe ME is 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.

It is beyond terrible- and like I said, extremely difficult to understand. Massive awareness and sensitivity are required.

Even the slightest wrong sound can trigger instant paralysis, as illustrated here:



The most powerful portrayal of the reality of Severe ME I have ever seen

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As a long term Carer for someone with Very Severe ME I have no words to express my gratitude to Merryn's Mum and Sister, for so bravely raising widespread awareness of "Severe ME" , both in the national press and on prime time TV. To watch this film, to see Clare and Amy fighting back their tears, is absolutely heartbreaking. To hear their story of dismissal by a Neurologist, who did "not believe " in ME, to hear how Merryn was told it might just be "panic attacks" she was suffering from, to hear how a social worker was actually sent round to check up on the family home; these things should shock you. The public should be horrified by the way ME is misrepresented and mistreated. By the harm that is being done, by the lives that are being devastated, while the disease, itself, continues to be poorly investigated. A much needed breakthrough is still nowhere in sight; yet the suffering is endless and beyond description. It should not be that people have…

PEOPLE WITH ME ARE IN GRAVE DANGER OF BEING MISREPRESENTED BY PEOPLE AND ORGANISATIONS THAT WILL NOT TRULY REPRESENT THEIR NEEDS

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A UK debate is raging right now that has profound implications for the whole ME Community. To what extent should we accept the psychosocial model, because there is no alternative? This issue can only be tackled, we suggest, by taking a step back and looking at the wider picture; the concept of death-making is a particularly useful framework from which to begin. Death-making is concerned with society's potential to bring death not life to those it does not value, this includes people with a disability, the poor, prisoners, street people, native populations, the elderly, the contagious, the chronically ill, the terminally ill; any group of people that is perceived as a threat or that has been demonized. Any practice, action or thought that considers a person to be less than human, less than valid, less than equal, is potentially a death-making one. People or groups that society do not value often suffer the "wounds" of being regarded as: a/.Non human
b/.A menace / object o…

Please Spread Awareness

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THIS IS SEVERE ME by Merryn Crofts In 2015 Merryn gave us permission to post her powerful description of what it like to have Severe ME . "Having severe ME, is like being trapped in your own body every single day. There is no rest, you are bedbound all day every day. It snatches the most simple things away from you like being able to wash yourself, even in bed. Being cared for in every way possible. In terrible pain, from everything. Not being able to talk on the phone or have visitors, and feeling worse about saying no everytime someone asks again. Months and months in hospital. Severe infections. Breathing problems. Low immunity. Problems anywhere and everywhere in the body. Paralysis. Severe hypersensitivity. The list is endless, and if I was physically able to type I would carry on. Spread awareness and remember all of us and all of those who have lost their lives." As Merryn says : "SPREAD AWARENESS AND REMEMBER ALL OF US AND ALL OF THOSE WHO HAVE LOST THEIR LIVES…