GBS recovery- please help

    • December 28, 2017 at 4:02 am

      I was hospitalised with GBS from May through July 2017. I have worked very hard to walk again but some days I just am so bloody tired. Like so many others I was very active pre-GBS and now I am a doughy blob. My feet are still numb, I have days where I am so emotional, and well I am now 20kilos heavier. All very superficial I know, I should just be happy to walk and be in recovery. I just get really down, sad and frustrated. I used exercise to help me cope with stress pre-GBS, now I am not so good. I’d love advice on just how to start again. I’d also like advice for my partner to read as he just does not get it. Thanks

    • jk
      December 28, 2017 at 11:28 am

      Start again with one foot in front of the other. Don’t dwell and ruminate on what used to be. Be positive. Ask your doctor for some physical therapy if you’ve not had any yet.

      There is good information on this site for your partner. For example, “Living with GBS
      Recovery may occur over six months to two years or longer. A particularly frustrating consequence of GBS is long-term recurrences of fatigue and/or exhaustion as well as abnormal sensations including pain and muscle aches. These can be aggravated by ‘normal’ activity and can be alleviated by pacing activity and rest..”

      Look over all the benefits and resources available here. And, Happy Holidays! Yes, be happy everyday, every thought.

      And, yes, partners, families, and friends almost always and universally do not get it because they neither see, comprehend nor empathize with your disease and it’s consequences. In an ideal world, your kind and caring partner would do their own research about GBS in attempts to assist and understand you.

    • December 28, 2017 at 11:32 am

      If you have not yet, read the post (thread) started by Cassie under the exercise tag. There is a lot of helpful ideas there.
      At this point in your recovery, please don’t worry about feeling superficial. It is early yet and this thing is quite the shock to the body, to the person, to everything. I’d say “never” feel that way, but it is bound to wiggle its way into the thoughts anyway. Just don’t dwell on it too long…or if you feel like dwelling for a while, throw rocks at a river or bread at ducks-please, not rocks at ducks! Take an art class even if you have no talent.
      I’m not sure what to say about your partner. My own family isn’t supportive even though they had to take care of my pet for the 2 months I was in hospital/rehab. As if I’m faking this whole thing. Check out the publications available on this website. My family wouldn’t read them, but the info helped me understand what I’d need to be aware of doing for myself.
      We’re here for you.

    • GH
      December 29, 2017 at 12:17 am

      Yes, you should be happy to walk again. But you must understand that GBS is a life-changing disorder. While complete recovery is possible, it is not likely to be achieved in just a few months. It may be about three years to maximum recovery and the recovery may not be complete.

      It is better to look at your progress compared to your condition when you were at your worst, not to your pre-illness condition. Look for things you can do which you couldn’t do a month ago. You must pace your exercise to your condition. You cannot speed your recovery by overwork, and may set it back.

      You should have had physical therapy, which would have given you guidance on suitable exercises. This foundation has a guide to exercises which should be online.

      As for controlling weight, that requires the discipline to match your food intake to your new level of activity.