in the same (sinking)boat
Hello, I am 40 ish and living with cidp. I had gbs and was paralyzed from the chest down. was never told how much i could recover. live with parents but also lived in a nursing home for a year. then was determined to well by medicare and shipped back home to mom and dad. I am currently getting IVIG treatments and has given me more energy. Numbness in feet and hands is permenent. still tingle from chest down. I work part time and am currently driving. I belong to the Y. Outlook is not good. I visit my Neuro on wednesday. I hve a feeling he will stop the treatments. I dont know what to think if that happens. I want to believe i am getting some benefit.. I feel good when i get the treatments and really run down right before the treatment starts again. I get treatment on Mondays and tuesdays . That makes Sunday a real struggle. I too stuggle with fatigue. I am exhausted all the time but here is an example of my week: Monday Infusion from 7am until 2pm then out with a friend 6 pm dinner then some computer time then bed around 8pm Tuesday Infusion 7 am until 2 pm head therapy than poker with the ladies.Wednesday Work and the Y Thursday Work and the Y Friday Work Saturday 1-3 work&Dinner with a friend Sunday church, breakfast and hanging out with my mom usually running errands and shopping. I know it doesnt leave me much time to rest but my mom doesnt believe i need it she wants me to stay active. I also suffer from Bipolar and am overweight. I am exhausted all the time and have trouble thinking straight most of the time. I am grateful to have such an active life but I get so tired and not to mention the pain. I currently dont take any meds for the Cidp. Thanks for taking the time to read this it helps to get it out.