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M.E. – often a life sentence

Monday 23 May 2011

From Dr. John Greensmith (via ME Free For All):

 

Ball and chainM.E. – Often a life sentence, 17 May 2011

Posted on 18 May 2011 by Dr John Greensmith

Our project, launched during M.E. Awareness Week (8 – 15 May) 2011 was called, “A sentence of M.E.”, a deliberate play on words to encourage sufferers of M.E. (Myalgic Encephalomyelitis), who are sometimes prisoners in their own homes or beds, to try to convey their experiences succinctly in a single sentence. The response, which exceeded all expectations has, by taking the time to express it in words, been especially cathartic for many sufferers and enlightening even for those family and friends closest to them, who thought they already understood, and has forged even stronger emotional and caring bonds amongst them. For the general public and medical profession alike, there is no better way of learning about how dreadfully disabling is this illness than from those who suffer with it and the massive hidden numbers it affects, hundreds of thousands in the UK, millions around the world.

We have selected a few sentences to illustrate some common themes of pain, isolation, frustration at disbelief, broken relationships, longevity, despair and some wry or gallows humour, in the hope that, collectively, they may suggest directions for research that is necessary to put an end to so much neglect and suffering endured over decades:

M.E. has stolen everything that makes life worth living.

M.E. is like a parasite that saps the very life out of you, leaving you a mere shell of your former self and its invisibility leads people to think you’re faking it.

Question: Have you ever driven your car when you have left the handbrake on? Or tried to run whilst in a swimming pool?  That feels a little like trying to carry on whilst you are struggling with M.E.

It’s my own invisible barrier that I have to struggle against every day but no one else can see what I have to go through on a daily basis.

I have to endure comments, such as, “Pull yourself together it’s not a real illness.” and “You seem all right today.”

It’s my own invisible barrier that I have to struggle against every day but no one else can see what I have to go through on a daily basis.

As a husband of an ME sufferer, it’s as if ME has stolen my wife and it breaks my heart.

I feel as if I have lost my sister and feel helpless to help her.

When our son, who was nine at the time, got M.E. our life as a family stopped.

I didn’t know, at the age of 15, that the last time I was at school would be my final day. I never had a chance to say goodbye to my friends.

Just feeling normal and happy with my family and friends for even a short time is worth everything in the world to me, that’s all I want.

I am celebrating my “coming of age”, having had M.E. for some 21 years now.

I feel sometimes as though it would be better to not awake again.

When I was diagnosed with M.E., aged 11, I didn’t realise the illness was for ever.

It’s a terrible thought that the only escape from this illness may be death.

Some people reckon the longest sentence in the world is “I do”. For me it’s “I have ME.”

We hope you will publish as many sentences of M.E. in the space you can afford us. The full collection, which is on our website at “ME Awareness” or click http://mefreeforall.org/wp/m-e-awareness-week-2011-projects-mefreeforall-org/ is being continuously added to and attracting further comments of common interest for sufferers, carers, doctors, researchers and unaffected people with enquiring minds.

As we say, raising awareness about M.E. does not start and finish in May each year but never stops until we have a solution to this awful illness, which is often a life sentence. There is no closing date for your sentences to be received, so do keep them coming to drjohngreensmith@mefreeforall.org with “A sentence of M.E.” in the subject line and please try to help us in this endeavour.

Yours sincerely
Dr John H Greensmith
ME Free For All.org

 

The above originally appeared here.

 


 

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