Posted 6/3/2011 6:33 AM (GMT -8)
I have had CFS/CFSID/FM/ME (whatever...) for 41 years! Done lots in spite of it, including BS in physiology, 5 yrs grad work in medicine, JD in law, passed bar 1st time, travel to 75 countries, studied 11 languages, lots of interesting temp jobs (never could work permanent full-time though). Now rarely out of bed; unable to turn at night; many periods where I can't move at all, can't talk, can't even open my eyes or when I can get the lids open, I can't focus. Shopping for wheelchair, but since I can't sit up or keep my head up, need one with special features I haven't found yet.
With the little energy I had last night, I tried to search for others on this forum with similar challenges to see how they have coped with essentially total functional (but not structural) paralysis. Please let me know if you're out there. (Please no anecdotal 'cures' or non-scientifically based treatment protocols....) I'm really more looking for daily living coping skills more than any medical/chemical/exercise regime fix. I feel I've already decided on the best medical/chemical/exercise combination (for me) that has gotten me this far.....