Friday, 10 July 2009

OK, somebody help me out here...

ME, CFS, CFS/ME, Royal Free Disease, the names for my Major Encumbrance are as plentiful as the stars in the sky, and bewilder me. I am dimly aware of the the politics behind the myriad names, and a look at the Hummingbird site will lead you to discussions about this.

For what it is worth, I don't feel that CFS - Chronic Fatigue Syndrome - as a name at all accurately describes my symptoms. We all know what fatigue feels like - if we have brought up children, worked in a demanding job, travelled across time zones, driven for too long, been ill, stressed or anxious, we have been fatigued. The cure is sleep, calm and rest, and recovery naturally follows once these needs are met.

But my "CFS" is not cured by this approach. I can sleep for ten to fourteen hours out of the day, and waken feeling worse than I did before. It can take me 30 minutes or so to become properly concious after such a sleep. "Fatigue" doesn't explain the aches and pains in my legs, my poor concentration, the brain fog, blurred vision, muffled hearing, headaches, irritable bowel, and why I feel either too hot or too cold at inappropriate times. Not all of these are constant, but I know that they are not necessarily improved by rest. Cognitive Behavioural Therapy doesn't help, and graded exercise doesn't either.

I'd be really grateful if someone could tell me exactly what the matter with me is, in simple terms.

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