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HERWriter (reply to Alison Beaver)

Alison,

Top 10 Things You Should Say To Someone with CFS is a good idea. I did a few around the Holiday Season that gave suggestions as to how to make the holidays easier for chronically ill people, types of gifts to buy (or not buy), offers to shop for people who can't; providing quiet rest havens to those who must take frequent breaks from gatherings; being in touch with people who are housebound, etc.

But I haven't written one on this. Thanks for the suggestion.

Not offensive at all, I appreciate your genuine efforts to comprehend this disease. The type of exhaustion you're talking about may be experienced by some of us, for me it happened during one part of my illness. But that has not been a major player for me for a long time.

Each of us has different symptoms it seems. As to mine, I find the neurological symptoms to be the worst. Suddenly my brain won't work right and I can't ... think. I lose thoughts and not in the normal way most people do. (I used to be that way myself and there is an enormous difference.)

Too much sensory stimulation at once sparks confusion and vertigo and a sense of being jumbled and fractured ... it may pass when the stimulation stops or it may take hours sometimes days or weeks to settle, depending on how sick one of us is.

I also experience an inner tremor, feel like my arms and hands are vibrating at times, and when I've been too active for too long my face may feel numb and tingling.

Vertigo and dizziness crop up and make navigating through a day more of a challenge than it really needs to be.

I do run out of gas sometimes but it is different from a normal tired, even a normal dead-tired. It is more like a battery just ... goes dead. Things stop.

Everything must stop, there is no choice, or I will end up on my face, panting for air, with white noise pounding in my head like the surf, chaotic messaging rioting in my nervous system, the room is spinning, I am spinning, and seasick. A feeling I can only describe as, that, my cells feel poisoned. It may be brief (in the last year or so, it usually is brief) or it may last for hours. Or longer. Much longer.

I tell ya, Alison, being tired is not even the tip of the iceberg for this disease.

I appreciate your asking these questions.

June 1, 2010 - 8:34pm

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