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Showing posts from August, 2012

Remove psychiatry from ME

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Please, please sign this petition :

http://epetitions.direct.gov.uk/petitions/37117

This is Severe ME

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

Prayers

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.


The Great American ME Scandal - for Obama

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Dr Peter White to the DWP 10th November 1993

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 10th November 1993  (from the N…

Carer learning is so important

(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 achieved an MA , two C…

Like the Morning

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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.

A long slow torture unto death

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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 disturbance
I bring  torment with nightmares, sleeplessn…

We have fallen

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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.

F..the MRC

I was thinking of setting up a new ME Group called :

Fostering Understanding, Competence,  Knowledge, Truth , Hope, Equality , Medical Research and Care.

..trouble is , look at what you get when you put all the first letters together !

What a coincidence.


25% Group and Stonebird : Do Not Mess with Severe ME

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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