Tuesday, 8 November 2005

So much more than chronic fatigue

Chronic Fatigue
"Imagine that you feel so utterly drained of energy that you can no more climb into bed unaided than scale Everest. Imagine that sleep, when it finally comes, leaves you feeling no fresher, and that you feel like this not once or twice, after a busy day or a stressful night, but frequently and without warning, for weeks, months and even years. Imagine also that your head aches and your muscles hurt, that you feel cold in summer and hot on a chilly day, that your skin crawls, that bright lights and loud noises are intolerable, that your concentration is poor and even your memory fails you. Finally, after endless tests, your doctor tells you that there appears to be nothing the matter with you. And then the doubts, the suspicions, the accusations begin. Are you making it up? Are you lazy? Or are you simply losing your mind? For thousands of people, this is the reality of the illness that dominates their lives ..."

I don't have to imagine. 

"Current definitions of CFS centre on unexplained persistent or relapsing chronic fatigue that is not substantially alleviated by rest, is present for at least six months, and which results in substantial reduction in previous levels of activity. Alongside fatigue, a diagnosis of CFS requires a number of other symptoms to be present, perhaps including impairment of short-term memory or concentration, mood swings, sore throat, tender lymph nodes, muscle and joint pain, headaches, unrefreshing or disturbed sleep and post-exertional malaise lasting more than 24 hours."
I can certainly tick "all of the above".

Because many tests found nothing, my GP told me that the pain I complained of (and still have to this day) was merely a figment of my imagination. I'm also sure she has written something on my notes, perhaps to suggest that I'm a problem or a hypochondriac, because of the poor attitude towards me from subsequent GPs AFTER they see those notes - they've been friendly before the notes arrived.

My father died utterly believing that because the "expert" doctor said there was nothing wrong with me, then there was nothing wrong with me.

Therefore, I effectively no longer have access to medical care, no recourse to financial assistance and I get precious little by way of sympathy. There is no way to get across how awful it feels to be utterly dumped, mistrusted and totally unsupported, especially by those who one had previously relied upon. 

And, never forget, that is on top of feeling ill!

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