SEEKING CFS PTS W/TOTAL INABILITY TO MOVE

OakPark Jane

New Member

Joined : Jun 2011

Posts : 1

Posted 6/3/2011 7:33 AM (GMT -7)

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.....

Thanks!

bayoub2

Veteran Member

Joined : Sep 2006

Posts : 2861

Posted 6/17/2011 8:32 AM (GMT -7)

Hi I don't know if any of this is what you are looking for, but...I am on disabilityfor what was dx'd as fibro and major depressive disorder and PTSD in 2006. I've run thru the gamut of pain clinics steroid shots, shrinks therapy blah blah blah....My fatigue did not reach your level of paralysis, but have had days where some one had to help me roll over or it took all day to make it to bathroom or kitchen...it could go for weeks like that...husband still doesn't have a clue.
Anyway, I set up all my bills to be debited from my account automatically or pay online. The monthly bill paying was soooo overwhelming. I try to schedule all "activities" before noon when I start my downhill afternoon slide. Load up the freezer!!!!! Stock the pantry!!! The thought of having to go get a gallon of milk was terrifying-LOL!!! Get your lazy family to help more (sorry, I don't know if YOURS is lazy but mine was spoiled..I did everything!!
My brain stopped working lol so I'm signing off good luck

Maggie

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