Exercise during GBS recovery
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October 20, 2017 at 7:56 am
I am interested to know how different people with GBS “stay active”… I am recovering well from GBS, some days I walk relatively normally (my muscles just fatigue quickly) and other days I struggle to stand and walk even with my trusty walking stick. Before GBS, I was a very, very active person, ran every day, played tennis, yoga and every exercise under the sun (never been much of a swimmer though)… My personality is still just as hyperactive, despite my legs and arms that don’t work as they did before (although I know I will get there eventually, which I am so incredibly grateful for!) Currently I am walking short distances where I can, doing light yoga and my physiotherapy exercises.
I would love to know other people’s experiences on what forms of exercise have been useful and enjoyable for them, and which don’t cause overriding muscle fatigue?
(Please know how grateful I am for all the things I can do already. I am so lucky to be recovering the way I am, and I am definitely not complaining because I know so many people are struggling A LOT more than me – to those people, I say keep fighting! You can do it! Don’t give up, you’re doing a wonderful job! – I’m just looking for some suggestions from anyone experiencing a similar situation.)
Thanks!
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October 21, 2017 at 6:33 pm
Pace yourself. Do what you can on the good days, do lighter yoga/calisthenics on wobbly ones.
You say you aren’t much of a swimmer, but how would water aerobics work for you? I tried it and it was good, but the chlorination bothered the asthma that I developed.
I walk as much as I can, do yardwork (trying to not bend down much), keep moving. I carefully test my limits when I know I can rest if I need to the next day. It keeps getting better. I used to have a very active job, so my challenge is to find a new job that won’t bore me or hurt me or wear me out so that I can’t exercise.
Drink lots of water.-
October 22, 2017 at 12:07 am
Thanks so much for your reply and your suggestions! I have thought about water aerobics and it’s coming into summer here (I’m in NSW, Australia) so it will be a bonus to cool down. (I can swim fine – pre-GBS, have not been in a pool since then – I’ve always just been really slow) Trying something different might be good for me too 🙂 Good luck with finding a job that suits you! I hope it all works out for you and you find something that is the right fit.
I am studying physio (my experience with GBS has actually been quite interesting from a professional perspective, experiencing what it is like to be a patient), but usually work waitressing/bartending which is definitely still off the cards (the fast-paced nature of hospitality is one the reasons I really enjoy it – but not too helpful at the moment, of course).
Do you have any tips for knowing how to “pace” yourself? I’ve been told that I need to pace myself by about 50 different people, but I struggle with that because I’ve always been a “go, go, go” kind of person and have always had trouble “pacing myself” in general in life 🙂 Since GBS, I don’t usually recognise when I’m “overdoing it” at the time, it’s not until the next day when everything is tight, sore and walking around isn’t too easy that I realise I have overdone it. And it doesn’t help that each day is different in terms of limitations and fatigue tolerance. Any tips?Thanks again! Best wishes to you.
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October 26, 2017 at 3:10 pm
Personally I hit the gym everyday, and switch up workouts to keep it fun, its not about the weight but repetition, just keep going and you will notice the difference. The important part is to not over-exert yourself, as that can have negative effects rather than good ones in my experience.
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October 26, 2017 at 8:45 pm
Awesome! Thanks for the tip!
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October 26, 2017 at 9:02 pm
I hope this makes sense…
Pacing yourself (with an autoimmune condition) is a fluctuating learning curve. No two days are alike. Well, maybe they are, but it doesn’t seem like it. Early in my recovery, I could barely stay awake for a trip to the grocery store. I felt like an idiot. Now, I rarely take a nap.
It helps to be self-aware, able to see your situation objectively. If you need to, keep a log book- like you would for weight training or conditioning. Include what you do, how you feel during/after (exhilarated, fine), “external” things such as humidity/hormones/meals…I’ve studied exercise enough also to see how curious it is from a patient’s viewpoint. On days when you are extra frustrated, review this log book to see how far you’ve come. All I need is to remember being unable to move, or even, when stepping off a curb, how I used to need to hold onto a street sign, a pole, or even the hood of a stranger’s car (alarms be damned-but none ever went off).
Pacing: eating a slice of cake per day for a week vs. the whole cake at once. Reading a chapter of a book per day vs. speed reading the whole book in a few hours.
I used to be able to work circles around people around me. I’m okay (for now) with knowing how hard I’ve worked to even try to keep up. It is like going from being a 100watt bulb to being a dimmer switch with loosening wires.
Be kind to yourself. Challenge, don’t punish. If you have a mile route to walk near your home, have a shortcut home if you realize you’re more tired than you expected. Once that is consistent, add an extra mile or 1/2.
So…if I know I have a “big day” tomorrow, I’ll walk a little less today. If the humidity is 100% (which saps all of my energy), I’ll do heavier housework inside as exercise.I found an article today in Forbes by Sarah Vermunt: Too Ambitious For Your Own Good? Three Tips For Pacing Yourself. (Aug 6, 2013) [I’d include it, but tech isn’t my strength…]
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October 26, 2017 at 10:45 pm
To Electra: Thank you so, so much for your comment. So incredibly helpful. I really like your explanation of “pacing” – definitely makes sense. A log book is such a good idea. I hadn’t thought of that but will definitely give it a go. I am absolutely learning more and more that recovery from GBS is a “fluctuating learning curve” which requires a lot of patience and self-compassion (two things I probably needed to learn), and completely know what you mean about stepping down from a curb! And stairs, or on a bad day, any kind of incline of the ground. I remember learning at uni that for an untrained elderly person, just stepping up a stair can require up to 90% of their one rep max for quadriceps strength… I’m like, well that’s me now – but patience.
Thanks for the link to the article. (I’m completely technologically challenged as well, don’t worry.)
Also, do you have any tips for explaining to people e.g. employers, colleagues, what recovery from GBS actually involves? Because it is difficult to explain and for people to understand that just because I don’t need my walking stick all the time anymore, and I look “completely normal” (unless I try to walk a moderate distance on a good day/shorter distance on an average day), it is still a long process to full recovery.
Thanks again! Good luck to you. I wish you all the best with your recovery journey, and know that you have the strength to achieve whatever your goals are! (That goes for everyone who is reading, too.)
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October 29, 2017 at 4:42 pm
Thank you, JK.
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October 29, 2017 at 5:42 pm
For me, the fear of falling down the stairs and the concentration not to took as much energy as going up did.
I searched the net for disability disclosure laws-Australia and found DREDF (1992). (Looked at it long enough to see if it is similar to the US ADA (1990/1), but not so much to confuse myself.) [I only knew about the ADA because I took a series of classes in college for “students with disabilities” right as that law was enacted. I have a pre-GBS disability…]
One website I’ve referenced is http://askjan. That is short for Job Accommodation Network. It is US info, but you can get ideas on how to approach things.
Those should help with employers. I’ve tended to be as honest and communicative as possible without going into too many details. I’ve said something like, “My condition continues to improve” and if it comes up: “Based on all of the research I’ve read, there’s very little chance of relapse.”
Colleagues…you don’t have to tell them anything. What I have said is, “I have something like MS but in reverse.” I’ve been careful to not abuse bathroom breaks, not take one minute extra of break times, drink only water, and be diligent and hard-working. That was always the way I was, but I don’t want to give anyone a reason to complain… -
October 29, 2017 at 7:14 pm
huh. (look what showed up in blue.)
yup. (learned something new.) -
November 30, 2017 at 8:37 am
Hello,
I have been recently trying to exercise more. I had GBS about 21 years ago. I hope I am not too far out to respond, but my response may be helpful.
I find that exercise needs moderation. I have a FitBit and track my steps, sleep, etc. I have been noticing that after days where I get over 10,000 steps, I only average about 4,000 the next day. I need a day or two to recover. Of course, other factors come in, like what am I doing those days. But I feel it, too. I need a LOT of sleep when I get the recommended 10,000 steps a day and need to recover.
I am trying to get the 10,000 steps [or more] 3x a week, but it is hard. I get intense burning and numbness in my lower back and legs when I walk a lot and need frequent breaks during my walking trips. I push myself through it, but it is very painful.
Rest is the only thing that helps my pain. [And Neurontin!] I push myself a bit more than I should. I feel that I must stay active, but find that perfect balance where I’m not over-exerting myself.
Good luck,
Liam
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