CHAOSTOCOSMOS

Tuesday, 8 November 2005

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 ..."

Times Educational Supplement: Chronic fatigue
 
I do not know if what I have is chronic fatigue, myalgic encephalopathy, fibromyalgia, or, for that matter, bubonic plague. Probably not the latter!
 
All I do know is that the above sums up how I have been feeling for 10+ years.

"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".

I can also add history that I won't bore you with, but which would strengthen a diagnosis. Not that anyone asked about or was even interested in that history.

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. She has also obviously written something on my notes, perhaps to suggest that I am a problem or a hypochondriac, because of the poor attitude towards me from subsequent GPs AFTER they see those notes - they have been friendly before they 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. My mother is now beginning to accept that there is, but clearly does not fully "get it".

Therefore, I effectively no longer have access to medical care. With no diagnosis, obviously, I have 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 unsupported by those who one had previously relied upon. And, never forget, that is on top of feeling ill!

"It is so difficult to get a doctor to diagnose CFS/ME that sufferers or their parents frequently regard success as a matter for celebration."

I STILL look forward to that day!
Pamela is a former accountant, recovering journalist and international cat herder, disabled and chronically sick with Myalgic Encephalomyelitis, Fibromyalgia and Cervical spondylosis, fluent in three languages; English, Spanish and Rubbish. Mostly writes in the latter. She likes Genealogy, Model Railways and Cats.

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