I guess I am an “Oldie”, been on this forum for over 8 years now, having come down with CIDP in 2002. I had one of the worst cases of CIDP that the Mayo in Rochester, MN (I live in northern MN) had ever seen, at my worst I couldn’t even sit up in a wheelchair, they had to put a plastic tray to lock me in. Couldn’t raise my arms, no use of my hands, & couldn’t even stand let alone walk. IVIG infusions & PE treatments did nothing for me, the 1,000 mg of solumedrol I was infused with bi-weekly let me pull knit clothing on, slide on & off a commode at my home, & eat once my food was cut up. Hospitalized for 4 months & sent home in this condition, prefaced by being told that there was nothing more they could do for me. I would be this way for 2 1/2 years. Did I have dark moments, of course I did, mostly for the burden I was putting on my family, the loss of my teaching job permanently, & the loss of all of my beloved sports.
After my cytoxan infusions in 2003 my CIDP was arrested & I got enough back to walk with AFOs & a cane, get my driver’s license back, & the ability to care for myself again. I still need a wheelchair for distances, use a shower chair, & suffer the exhausting fatigue, plus severe pain in my feet & hands, but my life is far from over. My husband retired a few years ago & we do a lot, spent much of the summer at our small island lake cabin & also took 3 trips this summer to my daughter’s lake home in Brainerd, MN. My main sport now is water aerobics, which I do twice a week at the local YMCA, in lakes & in the ocean. I will never play tennis again, downhill ski, cross-country ski, skate or play hockey, etc. but we do still snowmobile. We spent 2 months down in Naples, FL last March-April & had a wonderful time.
Next winter it will be Cape Coral, FL & Naples again.
Tomorrow we are leaving for a 15 day road trip out west, hope to see Yellowstone, spend 4 days at a mountain cabin in Grand Lake, CO & some time visiting family in Boulder, CO. We will spend a few days in the Black Hills in SD. I am posting this for the “Newbies” to give them hope, that even if you don’t make the great recovery, life can still be good. I live with residuals daily, but after awhile it becomes your new norm. I have lived to see my 3 year old grandson born & my 7 month old granddaughter; Mayo had given me a year to live back in 2002, well I fooled them. I need a lot of rest & most of the time feel tired, but life is still good. Who wants to get this sick at age 48, or at any age? But it does happen & we have to live with it & make the most of what we have left.