Stonebird

Please, please sign this petition : http://epetitions.direct.gov.uk/petitions/37117

"This is Severe ME" ..an Art Installation from Stonebird : http://www.stonebird.co.uk/thisME/slideshow/fade.html

Linda has never known such pain, has not eaten all day, dreadfully ill. Anyone else you'd get a doctor out but with Severe ME, it is so risky -  a strange on-call doctor and possible hospital admission could kill her. Please pray for Linda.  We just need to get through the night.

I have just posted this - for Obama : http://www.stonebird.co.uk/obama/index.html

This is Dr White's argument why ME and CFS should not be treated separately : "From my own work, as well as my reading of the world literature, I would not agree there is a consensus that ME and the Chronic Fatigue Syndrome are separate conditions. Because of my research and clinical experience of helping to reduce disability in the chronic fatigue syndrome, I suggest that separating the two conditions may enhance disability. The reason for this is that those who believe in the separate existence of “ME” believe this is a totally physical condition , probably related to immune dysfunction or persistent viral infection for which no treatment is available. On the contrary I think the present evidence suggests that the chronic fatigue syndrome is a genuine discrete syndrome and treatments and rehabilitation programmes are available which address both the physical and psychological factors which maintain this syndrome ." Dr Peter White to the DWP 10 th November 1993  ...

(I posted this on the Carer support site Carewell this morning :  http://carewelluk.org/ ) Look up “Carer Learning on the web” –the results are SO boring !!! Why ??? The traditional image of carers is that they are tired worn down - living an unimaginably dull overloaded life; the imagery often used seems to back this up. Caring is hard, it is exhausting, it can be isolating – that is true, however I am still me . I want to be seen for who I am – for me ongoing learning is essential on all levels : for my head, my body, my survival, my spirit. Words cannot begin to explain my passion for carer learning – so , using all the skills I have learned (!) - I've built a special web page for this article :  http://www.stonebird.co.uk/carerlearning/carertimesbig.html  I've spent the last 19 years caring full time for my wife, who has Very Severe ME – every single second has been one of agony and struggle. In the spaces in between though, in snatched moments , I have achiev...

This week has been particularly horrific, with excruciating noise sensitivity making life beyond impossible. In the video below, I explain how each day is a new beginning - full of hope....that is one of the ways I survive, as a carer.

Who am I? I am head pain raw and hurting Hammering deep inside Where nothing can touch me. Who am I? I am never-ending paralysis Numbing, invading, constricting Taking all thought and action whenever I choose Who am I? I am pins and needles Vast unimaginably bold and painful Flowing screaming irritating through inert immobile limbs Who am I? I am brain fog Blank, demented nothing Blanketing out memory, imagination, feeling, thought, emptying life Who am I? I am noise sensitivity Piercing ears, torturing mind, shaking body Powerfully Summoning paralysis I bring isolation and desolation Who am  I ? I am Light sensitivity Painfully bright, piercing and sharp Shutting down beauty and all things visible Who am I? I am pain Burning throbbing itching hurting Remorselessly assaulting constantly  and unremittingly Who am I ? I am muscle fatigue Collapsing, irritating, unreliable, pain filled weakness I cause failure to function , falls and  immobility Who am I? I am sleep d...

We have fallen Into a nightmare Abyss Of agony Torture And despair Invisible To most people There are no answers There is little help Just agony Noise abuse Chemical assault Without And within Our boundaries No support No solutions No tolerance No understanding No way to tolerate it Or stop it Our life Is indescribably Bleak And we are free falling To seemingly Nowhere. Meanwhile People with Severe ME Kill themselves Or die from neglect.

I was thinking of setting up a new ME Group called : F ostering U nderstanding, C ompetence,   K nowledge, T ruth , H ope, E quality , M edical R esearch and C are. ..trouble is , look at what you get when you put all the first letters together ! What a coincidence.

The 25% ME Group &  Stonebird announce the publication of : Do Not Mess with Severe ME - provide a proper medical service The document can be downloaded from : http://www.stonebird.co.uk/response/donotmess.html