or, alternatively, Introduction to Abigail’s Syndrome. [I can’t speak for the entire community of CFS/ME sufferers. I don’t even know if I have CFS for sure, for sure. (I guess we’d have to wait until the powers to be actually define it!!)] But here’s my experience of my illness, at least the CFS part of it.

  1. It has many names. Here are some of them: chronic fatigue syndrome, myalgic encephalomyelitis, chronic fatigue and immunodysfunction syndrome, post-viral fatigue syndrome, and some pretty outlandish ones like “yuppie flu” and “the Royal Free disease”. (The last one is named after a hospital where a bunch of people got the disease in 1955.) And because some of those terms are just long or extremely intimidating to pronounce, we have acronyms: CFS, ME, CFIDS, PVFS…. People disagree whether these are all the same disease and what the boundaries are, etc, etc.
  2. It is not the same as being tired. It is not the same as being tired all the time. It is not the same as being tired all the time for no reason.
  3. It is not “in your head” unless by “in your head” you mean its neurological. That very well may be true.
  4. There’s a difference between being sleepy and fatigue. If you get diagnosed with CFS (or if medical practitioners start throwing around acronyms like CFS or ME or say “the Royal Free disease”), (1) run for the hills and (2) develop a very precise vocabulary. Sleepy means that your eyes close when you don’t want them to. Fatigue means that your arms and legs feel like lead and you can’t walk. Tired means that you have no desire to do an activity. Exhaustion means that you’re so fatigued that you can’t move.
  5. #4 is important because a hallmark of CFS is insomnia AND fatigue. Two incredibly annoying things that should be oxymorons.

 

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