what are your residuals

Post Gbs Jan, 2000

Thanks for everyone sharing and participating . I had the full course with vent, recovered from total paralysis in about 6 months, but have never recovered from residuals. In fact, the older I get, I am now 60, they become worse. Stress seems to be the largest contributor to this, people say just relax, right that’s a word probably unknown to most of us. We’d like to, but the body will not follow. Well I do try , because I have to. After about twenty minutes on my feet or an hour or so of just being, my feet and legs are numb and I am severely fatigued. I think GBS is stress and no stress therapy or drugs seems to help. For me, No sleep, a husband finally on his way to rectal surgery after about 5 mths of chemo and radiation and still a long journey ahead. Dr’s do expect him to recover well and the cancer is contained in his tumor so far and his doctor does not expect he will need a colostomy bag.However, he’s lost 60 lbs and is incontinent as of now. He is also not much of an endurer of pain. Needless to say I am a short fuse(literally) as I seem to tingle all over especially in calves and face anyway, but this stressful situation has about taken me over the limits. I’ve had no choice but to suck it up here. When I inform his doctors of my situation and that doing alot of running around for appointments, etc they barely acknowledge. I now do all the shopping, run the family business and everything here at home. One of my sons helps alot, but he has a family and job to worry about. We have lots of friends, but you find out who your real friends are at times like this. I have a real friend who has been traveling for about 5 months, just back in town. She is one of the only ones who has watched me and helped me get through my initial bout of GBS. Most people, understandingly, worry over my husband and of course are concerned. She, knows what I’ve been through and how I am still broken, with no energy and alot of numbness and stressed to the max and she said “i’m more worried about you going down again than I am your husband.” Have you ever noticed that GBS’ers look exceptionally well and outsiders don’t see you as fatigued and sick?I have that looking great which I can;t complain about, but it’s just weird that you don’t look impaired on the outside unless of course you’re paralyzed.

My husband is worried about himself as I am, but sometimes I just need a break. As we live in southern california, the traffic is unreal and the surgeon is in the Los Angeles area- 95 miles one way. Pray that my husband will come out of this surgery and recovery process and that I’ll have the energy to do my part and for help to show up. I think anyone with GBS residuals which, I believe we all get sooner or later, will certainly emphathize with what I’m going through. For the survey, I have all the residuals explained in the prior threads, and stress and over doing it brings them all on. Love to everyone and all the frustrated GBS’ers who find out, not many other than the sufferers understand. Thanks for being there, because you know.