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I hear the same misunderstanding about Chronic Fatigue Syndrome over and over. That we're just tired. Mind you, the compassionate ones think we must be very tired. The less compassionate ones think we just need to suck it up and get moving.
This misconception springs entirely from the grossly misleading name hung around our necks. Chronic Fatigue Syndrome. Is it any wonder people think we're just tired?
But ... being tired is just a drop in the deep bucket of CFS.
Fatigue plays a part, but in the same way fatigue plays a part in so many illnesses. CFS isn't just fatigue.
When I was very ill, I'd sit in a chair or lay in my bed without movement, without a word, for hours. The observer might easily conclude that I was tired. Langorous. Quiet.
But they'd be wrong. I told my family, the quieter I seem, the louder things are inside.
Chronic Fatigue Syndrome for me has been a very noisy condition, neurologically speaking.
Tinnitus would build to the crescendo of an ocean's roar.
Parasthesia, weird neurological symptoms, would fill my consciousness to the exclusion of all else. Numbness, tingling, burning, vibrating ... kept me busy just trying to attain some sense of stillness.
Vertigo and orthostatic intolerance monopolized my attention as I'd try to cross the floor without falling down or bumping into anything. I'd pant for air, gasp for a deep enough breath with enough oxygen to bring relief.
The content of my thoughts would just ... break down. Like so many other messages from my central nervous system, they got garbled.
I was unable to think, but this was not a quiet calm zen-like non-think. This was chaotic, like flotsam and jetsam tossing on a riotous sea. Bits of thoughts crashing and burning.
Vision was fractured, like broken shards of glass. The slightest irregularity, a flashing light or too much action in the room, and my brain would rebel and tell my eyes to stop sending messages.
Get out of the room, go somewhere quiet -- Because I was not, do you see?
I was not quiet.
I was full of broken wires hissing and bouncing on the inner pavement, useless yet beyond my control ... they must be stopped ... But I couldn't stop them. The best I could do was try to steer away from any more stimulation, else things would go haywire once again.
Just tired? I wish.
I spent 15 years losing the battle against Chronic Fatigue Syndrome. Three years ago, I found treatment that worked for me, and now I am making a comeback.
http://www.ncubator.ca
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Another great piece Jody! If only it was just tired! For me the joint and muscle pain has been as debilitating as the (seemingly) never ending fatigue! And the weird twitches in the muscles! The list could go on and on and on! And for me there's the added insult to injury of being so super active before I got sick, that I have some bigger joint issues due to injury from sports, and as I continued to play even after I got sick (foolishly), and my co-ordination went out the window, I ended up with more injuries.
It's just such a relief to find everyone else who's suffered from this wretched illness has suffered exactly the same things as I have, in so far as other people's interpretations of what it's really like.
June 15, 2010 - 1:18amThis Comment