(Permission to re-post)
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
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
Please put an end to the abandonment of people with severe ME and give
us all real reason to hope."
By Emily Collingridge 2010-2011
You can support Emily and everyone with severe ME by joining the "Severe
ME/CFS: A Guide to Living" Facebook group
http://www.facebook.com/group.php?gid=114380158590669. Both sufferers
and non sufferers welcome! See also www.severeME.info.