This is painful to read or hear, Chris, but also of some interest to me. I
have symptoms very like those covered by CFS, in my case diagnoses have
taken the form of 'fibromyalgia', (not established), COPD (established) and
obstructive sleep apnea (established) plus a helping of other nomenclature
like 'supraspinatus impingement' and that old favourite 'osteo-arthiritis'.
All of those together, like system of bad rivers, produce what is very like
the descriptions of CFS I've read. But, still, in my case, they do not lead
to a cure, rather instead to minor palliative treatments (ironically these
include the Australian invented CPAP machine, which is rather like a
mini-vacuum cleaner, which I have to wear on my head each night :) and
which provides some relief but not that of the panacea it is touted as over
here).
My suspicion, in both your case and mine, it is a matter of there being
undiagnosed factors at work, my own doctors have just put me through
another round of blood-tests, but looking at the history of CFS I notice
that it's early reports, such as Royal Free Disease, seem to be of a viral
nature, environmentally viral at that, and I wonder if there's not
something like that at work. I know that pneumonia has multiple causes,
including viral, and pneumonia is what my 'exacerbations' develop into if
not caught by antibiotics in time ( I have become a very alert watcher of
the horizon.
Either that or, in case some wonder if this has nothing to with poetry, I'm
suffering from the effects of reading snaps by Patrick every week since
2003, which could explain things :) - I couldn't resist that - you keep
fighting man
care
David
On 25 May 2012 10:32, Chris Jones <[log in to unmask]> wrote:
> There has been something which I have been hiding, but now feel I must
> admit to and begin to make more public. It is very sad and difficult. For
> this I apologize.
>
> Has it now been two years since my younger gay brother committed suicide
> by hanging himself, I cannot remember, date time has become something else.
>
> It is now two months and more, over six months, that my treating doctor
> has refused to provide treatment for a treatable illness, CFS. He has told
> me that since I am a single man living alone on a boat, I am a drug addict,
> who does not have a wife to control my drug and alcohol intake! I am sick
> because I do not have a wife! I am not sick; I am an addict!
>
> Needless to say, this is a breach of state and federal anti-discrimination
> law, aside from being blatantly homophobic. Yet for the past six months I
> have been living in severe disabling pain, not able to sleep. I oppose
> suicide but pain prevents me from getting enough sleep to hold my sanity so
> I try to get myself to sleep with the hope that I may not wake again; in
> severe disabling pain, yet again lying still, gripping my torso, hoping the
> pain may end, through the long night hours. I no longer wish to live in
> this sort of pain, although I will refuse the easy way of suicide. And I am
> spending most hours of the daylight lying still, trying to breathe slowly,
> hoping the fatigue, pain and severe flu-like illness will leave me alone
> enough that I may do something. I struggle to cook for myself a meal; let
> alone write and do some more work on my photo art.
>
> I am currently composing a letter, which I intend on sending to my medical
> practice, the NSW Minister for Health, the Federal Minister for Health, the
> Prime Minister of Australia and the United Nations in New York giving a
> detailed account.
>
> Sorry for this heavy post, but must begin to make this situation more
> public and have chosen this list as only the beginning. This is the first
> stage in my fight for life and my right to practice as an artist and poet
> in Australia which, aside from a basic human right to live pain free, is
> also my right to practice as an Australian artist. The current political
> situation is denying me this right. Australia is in breach of human rights
> and as such in breach of international law. The fight for life, here, has
> only just started. This is one of my opening shots. I have chosen this list
> to begin to make this situation public, on an international scale. Action
> is life. Silence is death. And I will continue to fight, not just for
> myself but all suffering severe illness and discrimination living with
> severe illness such as CFS (aka CFIDS... see wwww.cfids.org.)
>
> Yours faithfully, Christopher C Jones, BA (Communication) Hons UTS
>
--
David Joseph Bircumshaw
"We are shallow, mababaw ang kaligayahan."
-* F. Sionil José*
Website and A Chide's Alphabet
http://www.staplednapkin.org.uk
The Animal Subsides http://www.arrowheadpress.co.uk/books/animal.html
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blog: http://groggydays.blogspot.com/
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