Life is almost back to normal, and whilst I am about 95% better than this time 2 years ago, when I still had to be hoisted in and out of bed and was intravenously fed, my sleep is now interrupted with pain in my legs which disappear when I get out of bed. However during the day I experience spasms and cramp in various parts of my body but thankfully no tingly fingers which was the main symptom of the onset of GBS.
I also wake up with a tongue that seems far too big for my mouth! but It does get a little better during the day.
At the moment I am making Christmas cards ( a hobby I love), but cannot do it for too long as my hands get cramped and feel like cotton wool. Even though it is a sedentary occupation I feel very tired after 2 or 3 hours.
I still have to use a wheelchair if we are going any distance, though I offer to push myself uphill when the going gets tough for mbm! I need something to lean on when walking and am terrified of steps when there is no guardrail..
Every day I count myself very lucky that I have survived GBS so well and even now there are some small improvements after over 2 years.
I think that’s all for now.
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October 2, 2011 at 4:35 pm
Barbara
It’s so interesting that this came into my mailbox today, because I’ve been having similar thoughts.
I’ve been back to work full time for almost a year, and I’m just over 2 years out of diagnoses. I was diagnosed July 24, 2009, and was hospitalized until January 5, 2010. Then I was in all day out patient rehab 3 days a week for 3 1/2 months, before returning to my home (in VA) from Chicago, where I’d been staying.
Just recently I finally came to the conclusion that I will never…never … be normal again. I can walk without a cane most of the time, but need it if I’m in a large crowd, mostly to warn others I need extra care. I can sometimes wear pumps now, but they have to be very very solid, and I can’t walk very far in them (like only in the office). And I can drive.
But my feet tingle and are in pain, yet partially numb ( if you understand) 24/7. Always, all day…all night. Nothing, no drugs, no massage, nothing stops it. It just is. I kept waiting for it to go away, to lessen, as I ‘recovered’. But I believe this is it.
And I’m so fatigued at the end of the work day, I collapse on the sofa. I have no social life. I live alone with 2 cats, and my only social life is an occasional dinner with friends on the weekends. Nothing during the week, it would be impossible.
This isn’t fair. And am I lucky and blessed to have this much? Absolutely.
But I’m still angry. I don’t have the life I’d planned, that I wanted. And I’m mad.
Fortunately (?) I was struck while I was on travel for work. So this is a worker’s comp issue. It was accepted as a claim, and I am covered. In addition, as a disability, they must make a ‘reasonable accommodation’ for me, and I’m going to request telework as an accommodation so that I’m not so fatigued. If that doesn’t work, I may have to go to part time.
I’m so angry about all of this.
Is anyone else angry?