Crying from my sickbed about another senseless CFIDS death....

Today I'm mourning the death of yet another victim of this monstrous and all too often fatal "syndrome" which too many doctors, health professionals and even friends and family are simply ignoring and/or, perhaps worse, refusing to believe in.  I did not intend to make this blog a place for downright preaching, perhaps because it turns so many people off of a topic that is often way too hard to stomach, and most definitely hard to understand and believe.  Today I'm crying because I've just learned about the death of a young woman whom I never knew, never even knew she existed, but have since learned how much she was able to accomplish in her short and tortured life: and make no mistake, she, as well as well as thousands, some suspect millions, are living a life of torture, for that IS what CFIDS/CFS/ME/Fibro is, "TORTURE." And yet she managed to somehow accomplish so very much in her short life, volunteering from her sickbed for the youth who have this illness as well as writing a guide to this illness for sufferers, a book which was well-received.  

After crying earlier in the day, I got angry.  I'm angry that this illness is still marginalized and I'm angry that funding is barely available for research and that the allocated funds in the past have also been "misdirected" to other places and mired in scandal.  It is disgusting.  Period.  Criminal.  Period.  Immoral.  Period.  Tragic.

Emily's family asked that the last letter she typed into her smartphone over a period of weeks when she still had strength be posted by anyone who cares about this illness.  Her words are so eloquent that I am proud to be able to place them here on my blog.  I am sorry for those of you who are uncomfortable with the "dirty" part of this illness, but this is one day that simply cannot be left to laughter.  

For those who would like to learn more about this brilliant young woman, the link I have here should give you more information:  
http://www.meassociation.org.uk/?p=10880

And now for Emily's so eloquent appeal:

"My name is Emily. I developed the neurological condition Myalgic Encephalomyelitis (ME) when I was 6 years old. In April 2011 I turned 30. I still have ME. 

ME coloured every aspect of my childhood; it painfully restricted my teens and it completely destroyed my twenties. Now, as I move into the next decade of my life, I am more crippled than ever by this horrific disease. 

My doctors tell me that I have been pushed to the greatest extremes of suffering that illness can ever push a person. I have come very close to dying on more than one occasion. If you met me you may well think I was about to die now - it's like that every single day. After all these years I still struggle to understand how it's possible to feel so ill so relentlessly. 

My reaction to small exertions and sensory stimulation is extreme. Voices wafting up from downstairs, a brief doctor's visit, a little light, all can leave me with surging pain, on the verge of vomiting, struggling with each breath and feeling I'll go mad with the suffering. Of course it can also be as bad as this for no particular reason - and often is. I cannot be washed, cannot raise my head, cannot have company, cannot be lifted from bed, cannot look out of the window, cannot be touched, cannot watch television or listen to music - the list is long. ME has made my body an agonising prison. 

My days and nights are filled with restless sleep interspersed with injections, needle changes (for a syringe driver), nappy changes (as well as experiencing transient paralysis and at times being blind and mute, I am doubly incontinent) and medicines/fluid being pumped into my stomach through a tube. My life could be better if I had a Hickman line (line which goes into a major vein and sits in the heart) for IV drugs and fluids, but such a thing would likely kill me. I'm on a huge cocktail of strong medications which help, yet still most days the suffering is incomprehensible. During the worst hours I may go without the extra morphine I need as I feel so ill that the thought of my mother coming near to administer it is intolerable - this despite pain levels so high that I hallucinate. 

I live in constant fear of a crisis driving me into hospital; our hospitals have shown such lack of consideration for the special needs of patients like me that time spent in hospital is torture (eased only by the incredible kindness shown by some nurses and doctors) and invariably causes further deterioration. 

Many days I feel utter despair. 

But, unlike some sufferers, over the long years in which I've had severe ME (the illness began mildly and has taken a progressive course) I have at least had periods of respite from the absolute worst of it. During those periods I was still very ill, but it was possible to enjoy something of life. So in these dark days I know there is a real chance of better times ahead and that keeps me going. 

My entire future, and the greatly improved health I so long for, however, currently hinges on luck alone. This is wrong. As I lie here, wishing and hoping and simply trying to survive, I (and the thousands like me - severe ME is not rare) should at least have the comfort of knowing that there are many, many well-funded scientists and doctors who are pulling out all the stops in the quest to find a treatment which may restore my health and that the NHS is doing all possible to care for me as I need to be cared for - but I don't. This wretched, ugly disease is made all the more so through the scandalous lack of research into its most severe form and the lack of necessary, appropriate support for those suffering from it. This is something that must change. 

And that is why I tell my story; why I fight my painfully debilitated body to type this out on a smartphone one difficult sentence at a time and to make my appeal to governments, funders, medical experts and others: 

Please put an end to the abandonment of people with severe ME and give us all real reason to hope." 

How many more deaths will it take before something is done about this "syndrome?" Too many have already died and yet it continues... Царство тебе небесное...may you rest in peace, Emily.  (1981-2012)