Stonebird

Stonebird : the lived experience of Severe ME Greg &  Linda Crowhurst 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. Hypersens...

1 You cannot think clearly, concisely or at all. 2 You cannot deal simply easily or specifically with questions. 3 You cannot always speak. 4 You cannot coordinate sight, mind and action. 5 You cannot bear sound. 6 You cannot bear ordinary light. 7 You cannot bear physical contact. 8 You cannot chat or have a simple easy conversation with anyone in person or on the phone. 9 You cannot hold implements or carry things. 10 You cannot swallow reliably or safely. 11 You cannot eat a full range of ordinary foods, but have to follow bizarre or restricted diets and you certainly cannot eat your favourite food. 12 You cannot eat with a knife and fork or necessarily feed yourself at all. 13 You cannot eat at normal meal times. 14 You cannot sleep at normal times. 15 You cannot move at whim. 16 You cannot get to the toilet when you need to go. 17 You cannot brush your hair or bear to have it brushed. 18 You cannot wash your hair regularly for months on...

A story deserves to be told. My story deserves to be told. Why should it be that I can live in torment being continually harmed by everybody around me, without proper physical investigation or medical explanation and appropriate treatment  or support. Without the dignity and respect afforded to any other person with any other illness? No one would believe how bad it is for people, once they have a diagnosis of severe ME. No one would believe the medical neglect, harm, misinterpretation and misrepresentation. No one should have to live in this state without adequate or appropriate medical investigation and support. This is my story.... But I am too ill to write it....

It is a hard thing to bear , needing your husband to care for you year after year and to see him have to give up so much to do that , to make the decision to put your needs first before other people, career, status, enjoyment. success, money , a life. But harder still is to see how little support he receives, how little people really care about him, how when he has made the choice to love me and care for me, people do not seem to get it. They don't seem to see how stressed he is, how worried he is, how exhausted he is, how poor we are. Instead they demand he provides for them, meets their needs, cares about them too, runs around after them, engages in meaningless banter about their lives, punish him for not doing more for them, neglect his feelings and deny our reality. But never ask him about how he is, never ask how I am, don't even want to know how ill I am or how concerned he might be, how he might need help or support or kindness himself rather than just endle...

I spend my day waiting Waiting for the paralysis to lift Waiting for the pain to decrease Waiting for a moment when my brain might clear Waiting and hoping that I will be able to bear you in the same room as me Waiting and hoping that you won't make a sudden noise or movement that will tip me into torment and irritability Waiting and hoping that you will be able to speak to me and I will be able to listen and not react in agony Praying that the jets won't fly and the noise instantly paralyse me and hurt me Praying that the neighbours will not speak loudly through the wall Hoping there will be no building work or lawn mowers in the vicinity of my house to torment me Hoping I can claw myself out of the hole which twenty years of constant allover pain and daily recurring paralysis and a host of other complex symptoms has forced me into Hoping I can win the battle against noise that dismembers me,attacks and destroys me moment from moment without warning Hoping tha...

IN THE ORDINARY WORLD, often you see something is needed, you see how to do it and you take action because it makes sense and is quite simple practically to do, but in the world of Very Severe ME particularly, nothing is obvious, nothing is simple and what appears to be simple can do a lot of harm if done without awareness, in the wrong moment and in the wrong way, without the person's co-operation and without working in partnership with  the person. What might be considered insignificant or tiny achievements, such as being able to cope with moving the bedclothes, take a sip of water, open your eyes and looking at something, being able to tolerate the help needed to get to the toilet; these can be big events in the life of the Severe ME sufferer, even though the well person might take them for granted or not realise how huge they are. In taking a holistic approach you need to take account of the person’s reality. You might reflect upon their experience from a mind, body, emo...

I  Staring Cannot function Feel out of step With time itself Dissociated  From life It passes by me Whilst I Sit Or lie Staring Paralysed Disengaged from all worldly things The distance Between Infinity and me Seems equal To the distance Between Me and ordinary life

The Stonebird (informal) Definition of Severe ME Severe ME is a hellish experience that you live and endure without treatment, cure or respect . Severe ME is not knowing how to cope from minute to minute, moment to moment. Severe ME is being tormented by people doing ordinary things. Severe ME is being inhibited by paralysis. Severe ME is being  totally ill, all the time. Severe ME is being unable to  read. Severe ME is being  unable to hold anything. Severe ME is falling over regularly. Severe ME is your mind not working. Severe ME is being unable to speak on the phone. Severe ME is finding that going to bed makes you  feel even more ill. Severe ME is discovering that there is no  possibility of rest, ever. Severe ME is being unable to see anybody because they make you more ill, because  you are  so hypersensitive. Severe ME is not  knowing  what to eat that won't hurt you. Severe ME is being neglected by the Health Service...

This is my Linda, my strength, my rock. Last night  I was close to tears, as I sat with her, her body,  no matter the hot water bottle, the raging wood burner,  ice-cold and getting colder, her legs, feet totally devoid of feeling and sensation, her beautiful hands, that used to play the guitar so exquisitely hanging lifeless and numb, her mouth too paralysed to open, her body draining away. She is seriously ill. What could I do ? Anyone else you'd call an ambulance - infinitely more complicated when the person has Very Severe ME, making an ambulance crew likely to cause serious harm and a hospital environment more than likely to kill her. What do you do ? You sit, you pray, you try not to cry or despair. You rage, inside, at the injustice, that she is left like to deteriorate, with nothing being done to help or take her ME seriously. You wonder how you'd cope without  her. Your love is all you've got. That was last night. Today is no easier.

 NUMBNESS PARALYSIS HYPOGLYCAEMIA DIZZINESS  FOOD SENSITIVITIES/ ALLERGIES PAIN PARASTHESIS HYPERESTHESIA SEIZURES MUSCLE SPASMS SLEEP DISTURBANCEORTHOSTATIC INTOLERANCE HEAD PAIN HEADACHE INSOMNIA VISUAL DISTURBANCE PERCEPTUAL DIFFICULTIES BALANCE PROBLEMS COGNITIVE DYSFUNCTION FLU-LIKE SYMPTOMS SORE THROAT POST EXERTIONAL NEURO-IMMUNE EXHAUSTION MUSCLE DYSFUNCTION MULTIPLE CHEMICAL SENSITIVITY DRUG SENSITIVITY PHOTOPHOBIA   LOSING/GAINING WEIGHT DIGESTIVE ISSUES SWALLOWING DIFFICULTIES ACUTE HYPERSENSITIVITY EMOTIONAL LABILITY DIARRHOEA/IBS TYPE SYMPTOMS POOR TEMPERATURE CONTROL  BREATHING DIFFICULTIES NAUSEA  HYPERACUSIS VOMITING NEUROLOGICAL, AUTONOMIC, NEURO-ENDOCRINE, IMMUNE, CARDIOVASCULAR GASTRIC DYSFUNCTION

Focusing upon Fatigue and not the more serious Neurological/Cognitive, Autonomic,  Neuroendocrine, Immune, Cardiovascular and Gastric manifestations. Not focusing on enterovirus as the cause of the disease and not treating people  with anti- virals that could be available. Allowing wide and loose clinical  definitions which do not define ME at all. Not standing up adequately, if at all,  against the  inappropriate involvement of psychiatry . Allowing the mishmash psychiatric  CFS continuum to continue . Professional arrogance. Allowing psychiatry to push its own agenda, through active collaboration. Accepting the medical establishment view that there are no tests that can be done. Accepting the status quo rather than pushing boundaries and saying "No" . Not admitting that they  do not know all that they should or could know. Not being willing to do home visits to people who are frail and severely affected . Not understanding ho...

It is time to put my money where my mouth is ! After spending hours, weeks, converting my book to Kindle format, after solving unspeakable, hair-tearing technical difficulties, at huge cost to Linda and me, I am finally ready to upload a nd publish "Severe ME" on Amazon. Click, click....all fine, until...WHAT CATEGORY ? Filing your book under the most accurate category online is vital. No surprise to find there is no such thing as a "Myalgic Encelphalomyelitis" slot on Amazon : except there IS one of "Chronic fatigue Syndrome ". Now HERE I find myself on the same horn of a dilemma that many of our charities and clinicians occupy : do I throw my principles to the wind and for the sake of "funding" accept the CFS classification - ensuring potential sales for my book, or do I opt for nothing ? I'd rather have nothing. http://www.amazon.co.uk/Severe-featuring-Justice-Karina-Hansen-ebook/dp/B00HM8Z5VC/ref=sr_1_1?s=digital-text&ie=UTF8&q...

HAPPY NEW YEAR !!! Just to let you know that "Severe ME, featuring Justice  for Karina Hansen" is now available as a Kindle book  on Amazon. The eBook version contains an extra chapter by Kara Jane Spencer and is fully hyperlinked - so that you can click onto any reference and access the source material: that took some doing ! I was very anxious to release "Severe ME" as an eBook, following enquiries from readers- some  people find a Kindle much easier to hold. It is currently being offered at a special low price. http://www.amazon.co.uk/Severe-featuring-Justice-Karina-Hansen-ebook/dp/B00HM8Z5VC/ref=sr_1_1?s=digital-text&ie=UTF8&qid=1388565545&sr=1-1&keywords=Severe+ME+featuring+Justice