Stonebird

From : Unstoppable Spirit : Contemplations & Prayers for those who suffer.

Norman Lamb, UK Minister of State for Care and Suport,  has written to me. His letter contains the following clarification  : " The use of the composite term "CFS/ME" is not intended to imply unanimity of aetiology of conditions covered by the term, or indeed to suggest that all conditions which fall within the scope of this term are equal in terms of severity of impact. The use of an umbrella term is also not intended to imply that fatigue syndrome and myalgic encephalomyelitis are equivalent " He also stresses that "The Department of Health classes CFS/ME as a chronic neurological condition and we are clear that CFS/ME is a chronic illness and health and social care professionals should manage it as such."

Even when the noise has temporarily lowered The echo vibrates, reverberates , resounds physically around my body, tearing at my ravaged guts, my muscles tremble then shake violently out loud Diminishing me Demolishing me Damaging me Dementing me Still Even when the paralysis looses its grip for just a second Still it clings to me pulling every cell towards total incapacity time and again without relent Halting me Hurting me Hindering me Harming me Still Even when I have managed to move my finger or my toe or my eyelid or my mouth The inability still lingers, lurking in every muscle Reducing me Redefining me Ravaging me Rasping at me Still Even when the headache finally lowers, The head pain and body pain is ever present, no cell unaffected Shouting at me Screaming at me Scorching at me Sundering me Still Even when the moment by moment external assault diminishes slightly ,the  constant, internal, pounding bodily assault remains, harming me with its ...

"Hello! My name's Amy, I'm 30 years old and I live in Winchester (Hampshire). I have suffered from this horrid illness M.E. for over a decade and am mostly housebound and often bed bound. Every year I try and do something in my own little way to raise funds for charity, but when you have severe M.E. you are quite limited in what you can do!  In the past I've done a sponsored silence and sponsored screen free weekend, as well as giving up Birthday and Christmas money to raise awareness and money for M.E. However, each time that I do, I am very aware that it is only those in the M.E. community or their immediate friends and family who donate. Very rarely does the news travel to the general public. I realised it was going to take something a bit bigger to do this and given that my body won’t allow me to bungee jump or parachute jump... sadly, I have made the bold or should I say bald decision to shave my hair off to raise money for charity!! Very drastic I know, ...

This is just to announce my new book, written with much love for all who suffer and struggle - God bless us all.

Just got  back from my cycle ride today - the final proof  of Unstoppable Spirit has arrived !  It is almost ready.

Every moment is a  moment of extreme limitation Every moment is a moment of constant and severe physical torment Every moment is a moment of total constant continuous pain everywhere Every moment is a moment of unpredictable reaction Every moment is a moment of feeling severely ill. Every moment is a moment of numb limbs. Every moment is a moment that the environment is hostile Every moment  is a moment where noise is harmful, damaging and dangerous. Every moment light pierces and impacts painfully. Every moment  is a moment that the world is inaccessible.  Every moment the environment is hostile and unpredictable. Every moment is a movement away or towards paralysis. Every moment is a moment of inability. Every moment is a moment of brain fogged unreality. Every moment is a moment of difficulty interpreting incoming information. Every moment is a moment of physical difficulty. Every moment is a moment of physical distress. Every moment is a momen...

Greg & Linda Crowhurst 18th March 2013 All the time that ME is treated only as a fatigue illness the health needs of the very severely affected, who feel unimaginably ill in every moment, who are not generally part of research and whose experience is poorly if at all understood, are massively at risk, for some of the following reasons - this is not an exhaustive list by any means : 1. It is impossible for the person to travel to a clinic or a hospital. 2. It is extremely difficult to find a knowledgeable GP or consultant . 3. There is little, if any choice of biomedical ME consultants. 4. Knowledge of how to approach or communicate with a person with Very Severe ME is minimal. 5. The system expects people to fit into it and is not very accommodating of those who cannot. 6. Hypersensitivity to touch makes physical contact unbearable, dangerous, impossible without harming the person with Very Severe ME. 7. Hypersensitivity to noise makes it difficult to impo...

Defiant? Of course. Who would not be With so much discrimination Negation Neglect Abuse Suicide And death? Surely It is time For all the misdirection to stop. We are  all so very very  physically ill. We cannot live in the normal world. Our hypersensitivity is an invisible barrier That excludes us from normality And opens us to Misinterpretation And denial. We should be treated with respect. We should be adequately investigated. We should be understood and protected. Yet instead we have to explain, articulate, argue our case We have to suffer indignity upon indignity, To risk mistreatment,wrong treatment or no treatment To live in total isolation Whilst professionals misinterpret our reality Charities compromise the truth And politicians toe the party line Not wishing to upset the vested interests. It is time to accept the fact that ME  has been abused and abandoned Thrown to the psychiatrists Cast on a sea of fanciful fatigue Obfuscated in an ocean of wrong jargon and ...

I despair sometimes - there is a very interesting article in by Jason et al , in Fatigue: Biomedicine, Health & Behavior Volume 1, Issue 1-2, 2013, on an "Energy Envelope" in ME; the premise being that a person with ME needs to learn how not to exceed that envelope. However the assumption that you can rest bears no relationship to my wfe's reality. She has Very Severe ME , rest is actually harmful to her, it increases her symptoms, pushes her further into paralysis. My wife cannot rest - relaxation, sleep, brings no relief, makes her much, much worse. This Energy Envelope theory is far too simplistic for someone with complex needs, like Linda. The fatal flaw in current ME research is that it does not appear to take into account the most severely affected - in what other disease would that be acceptable ? By definition if you have Very Severe ME you are not able to attend a clinic, you are not able to engage in two way interaction, you are not able to bear visitors - n...

I'm cryin Mr psychiatrist my wife is dyin every day I'm out there trying to free her from the CFS game you're playin ME is not CFS x 3 ..but you know that anyway WHO 93.3 I wish there was someone she could see I wish there was someone who would take it seriously ME is not CFS x3 ..but you know that anyway Mr psychiatrist what is your deal when will you admit ME is real we are paying a terrible price you have compromised NICE and the CDC they call it fatigue and not ME ! ME is not CFS x2 ..but you know that anyway

No matter how many tears I cry I cannot wash the ME away No matter how much I shout I cannot get over the barrier between my world and yours No matter how much I try to move The paralysis will not shift till it is ready No matter how much I strive I cannot make my energy materialise from nothing No matter how many positive thoughts I think It will not heal my physical dysfunction No matter how hard I try to pace myself I cannot stop my health deteriorating afterwards No matter how much I long to be well It does not make it so. No matter how ill I am I will not get better without proper medical investigation, tests and treatment.