Showing posts from July, 2012

An ME head


Emily Rose: an appreciation by Cathy Stillman-Lowe

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 th

A demented outlaw from my own bed

I live in a cracked world Dislocated Damaged Assaulted And violated By ordinary things Noise is an insult too far I cannot bear it It does not just hurt me on the outside It invades me It dismembers me It jellifies me On the inside Where no one can see Or know The true horror of my experience The sheer extent of the Vibrating damage. I am screaming in torment My muscles belong to no one Anymore Certainly not to me They are beyond my control Long gone Into an abyss Of dismembering Horror Indescribable In its violence Far too easy To say pull yourself together And to blame me For my incapacity To bear it Even for a moment longer Than to Understand the tremor Of despair The complete and Overwhelming Destruction Of my grasp On ordinary Reality So long gone Now That I am an Alien In my own Home A demented Outlaw from my own bed Separated By an invisible barrier Of violenc

Perhaps this is why ME is so maligned

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 m

The sensations creep in silently

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.