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Showing posts from July, 2012

An ME head

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Emily Rose: an appreciation by Cathy Stillman-Lowe

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Emily Collingridge's passing is a terrible loss - the light that shone so brightly has finally been dimmed after many years of deeply painful struggle. Her extraordinary spirit will however never be forgotten by those whose lives she touched, and her book ‘Severe ME/CFS: A Guide to Living’ constitutes a permanent and invaluable legacy for those suffering from severe and very severe M.E., as well as those caring professionally or personally for such people. I was able to work with Emily on several publishing projects; her formidable intellect, her facility with words, a relentless drive and determination to see a project through, and a consistently meticulous attention to detail led to the highest quality output.  Her book remains an outstanding achievement, and testament to her determination to help others and turn her suffering into a force for good. As a friend, she was tremendously thoughtful, generous, honest and loving.  I first met her through a feature that I was wr…

A demented outlaw from my own bed

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I live in a cracked worldDislocatedDamagedAssaultedAnd violatedBy ordinary thingsNoise is an insult too farI cannot bear it It does not just hurt me on the outsideIt invades meIt dismembers meIt jellifies meOn the insideWhere no one can seeOr knowThe true horror of my experienceThe sheer extent of theVibrating damage.I am screaming in tormentMy muscles belong to no oneAnymoreCertainly not to meThey are beyond my controlLong goneInto an abyssOf dismemberingHorrorIndescribable

Perhaps this is why ME is so maligned

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What is so terrible is the invisibility of pain. 


You just can't see the burning throbbing screaming writhing nerve pain shooting in my whole body, the black blankness in my mind, the massive throbbing head pain boring into my brain the burning stabbing itching eye pain, the swollen nauseating stomach pain, the effort of no energy in your muscle, the brick wall affect of breathlessness, the indefinable jelly sensations as my muscles lose their tone and paralyse, unable to function or hold me up. 


If only it was illuminated in multi coloured hues so that the agony was visible and the distress and bizarre experiences obvious to everyone else. If only. Perhaps then their might be some level of comprehension of the horror of my experience, the devastation people wreak upon me in their happy ignorance and the absolute inability I have to function or communicate effectively with anyone at all or engage with normality for even the simplest thing.


 Perhaps that is why ME is so maligned an…

The sensations creep in silently

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The sensations creep in silently
My muscles scream in response
Yet nothing is heard
Nothing visible
I am demolished to a spasming jelly
Nausea floods me  in wave upon wave
Black nothingness creeps into my vision
I feel as if I will pass out
My head is full of pressure
Piercing throbbing massive head pain
My left arm hangs inert
Stopped in its motion
Paralysed totally
My leg feels cold,
a blanket  of prickling pins and needles
Blanks out the possibility of movement
My neck  is numb
Creeping paralysis flows into
My throat and tongue
My face is palsied
My mouth no longer smiles on the left
I am pierced with illness
That incapacitates
Invisibly
And leaves me in tearful agony
It is unrelenting
On and on it goes
Day in day out
Hour in hour out
Moment in moment out
And I am left with no where
Within me or without me
To find  the solace
To bear it.

The Worst Day

She sobbed , for a very long time; going beyond despair, at the pain she is in, the ongoing lack of response, no matter how hard we fight, the incomprehension of professionals and neighbours, who just have no idea of the deadly agony she is in, the injustices we both suffer. The cry came from her deepest pain-wracked,paralysed, tormented ,massively deteriorated self. Yesterday was the worst day.