new to GBS, trying to heal, concerned about fatigue long-term
June 30, 2010 at 3:54 pm
Post-IVIG patient here. Checked myself out of hospital after two weeks as soon as I could walk 10 steps without collapsing. I swear that the hospital was at times worse than the illness. Rehab at home and at a local clinic now.
I’m concerned about regaining endurance. I teach middle school kids and they are a handful. I ran many programs. Job was stressful for me at time, cannot imagine it in current shape, lucky for summer vacation.
What are the odds for folks and returning to high-stress jobs?
Not sure why I am concerned about this while I am dependant on family for everyday life. Bigger problems ….miss touching wife, playing with my kids, my guitars…..but job feeds family and fun.
Inspired by those who were ‘locked-in’. Thanks for sharing your stories. You rock!:cool:
AnonymousJune 30, 2010 at 4:00 pm
Sorry to have you join the ranks. 😉 Best wishes for a speedy recovery.
There is another member on here who is a teacher, and had GBS in December. She is planning to return to work this fall so you may want to touch bases with her. I think every case is different so it is hard to plan, but a lot of people do return to regular work. In my case, my job is sedentary. You could probably have accommodations, like sitting down, etc.
Make sure you rest, rest, rest. I am 7 months out and still plagued by fatigue, but I lead a high activity life with little time for rest, so that contributes, I am sure.
AnonymousJune 30, 2010 at 6:03 pm
I am 5 months out of the hospital. Returned to work after 2 months but just for 2 hours per day. I am now working about 7 hours per day but take a 2 hour break in the middle for rest. Not sleep just rest. I am a production supervisor with about 25 employees and three buildings to cover, and high stress. I to was and am very concerned about my job and financial security. So far work has been very understanding and my doctor has been very good at providing documentation of my limitations. I am getting around with a cane and have a good four to five hours in me before needing rest. My feet are still numb as are my hands (typing is fun when you can’t feel the keys). Good luck with your recovery. we are all different in the speed and completeness of recovery. If you would like to talk on the phone send me a private message and I would be happy to talk about my experience with GBS.
AnonymousJuly 10, 2010 at 8:43 am
Hi-if you have the same recovery as I had you will be well on your way after a couple of months at home. It was february (’05) when I got home (after 4 weeeks only) and by May I was able to unload and move heavy bundles of hardboard siding by hand from point a to point b. Hard work was fatiguing but got less so as time went on. Even now afer a hard push at something I stagger a bit like I had too much! But what was really worrisome was –would I be able to have the same coordination as before? Yes it all came back. The big fear was having to relearn, but not so. Also after a couple of years , even the knee-jerk reflex returned. But I admit, I am one of the (many) lucky ones.
You will likely have residuals (tingles and numbness) for some time and they seem to wane as time passes. You may even get the odd scare as has happened to me where you think you’re ‘going down’ again but it abates for whatever reason.
best of luck…Ray
AnonymousJuly 10, 2010 at 11:41 pm
hey i got diagnosed with GBS in december and this summer i am working at a summer camp with a ton of little kids. I have found it to be tiring but i found if i sleep at night for a good amount of time and take a nap for an hour or two after work when i get home i’m still able to do it.
Best of luck with everything 🙂
July 11, 2010 at 2:44 pm
I am a university professor – and missed six weeks of classes when I first had GBS (now two years ago). The remainder of that semester was VERY tiring! Could only do half days at first – and was in a walker till the end of that semester.
Now – I just finished a half-marathon this past May and am preparing for a full marathon in November. I know I am fortunate to have recovered so quickly, but find that every moment in the classroom is now even more precious to me.
Good luck and hang in there !
AnonymousJuly 11, 2010 at 6:28 pm
Hi 🙂 I started with GBS and then was diagnosed with CIDP and I think the key is just find out what your new “normal” is . Don’t overdue it though . I am the type who has to be doing something all the time so it was very hard for me to learn to listen to my body . Some days I have to just realize that housework and stuff like that will be there tomorrow . I have to concentrate on just getting the essential stuff done 🙂 Plus your body will get stronger …try not to worry it does get better 🙂
Good Luck !
AnonymousJuly 12, 2010 at 7:29 am
🙂 guitarguy, I am certainly wishing you a fast recovery. It is now 4 months since I was diagnosed with GBS and have seen very little signs of recovery. We can only hope and pray the next day will be better. There are very few sites as good as this one to help give encouragement and ideas of what to expect. Fatigue is one of the worst parts of this disease. We go from healthy to baby steps almost overnite. I love to walk and run, but that is not an option right now. I find I walk a block and rest a few minutes. Then repeat the process. God bless you and know you will get better soon.
July 12, 2010 at 8:12 am
I’m having a string of days where I feel worse actually. Though my walking has improved, my hands, arms and torso all feel as painful as ever…..though I can hold a glass better…….it’s not enough
I did get good news from work, they recommend that I stay off until December to recover…..gives me a bit of freedom from that stress….regardless, I would still rather go back to work in Sept.
AnonymousJuly 22, 2010 at 9:59 am
Hi, I know it is frustrating but it is better to take the time now to heal as much as possible. I tried to go back to graduate school too soon and couldn’t manage the work load. If I had waited out another semester or two, it would have worked much better. My hands were the first thing to feel systemic and the last to heal. Best advice I can give you is to try to work on your dexterity (they told me to GENTLY squeeze tennis balls). Playing your guitar should also help but don’t overdo. The tingling is maddening, I know, but eventually it will fade.
July 22, 2010 at 6:57 pm
[QUOTE=bevgray]Hi, I know it is frustrating but it is better to take the time now to heal as much as possible. I tried to go back to graduate school too soon and couldn’t manage the work load. If I had waited out another semester or two, it would have worked much better. My hands were the first thing to feel systemic and the last to heal. Best advice I can give you is to try to work on your dexterity (they told me to GENTLY squeeze tennis balls). Playing your guitar should also help but don’t overdo. The tingling is maddening, I know, but eventually it will fade.[/QUOTE]
Thanks for the encouragement Bev! I luv it!
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