That morning, I slept until 11:30.
I couldn't recall the last time I slept that long, but immediately knew
something was wrong. As I tried to get up, I had a "floating"
sensation. I couldn't feel my feet touching the ground and made my way
to the couch by holding on to furniture and walls. I sent a message to
my husband, who was an hour and a half away, and told him I was going to
call my son to leave school and take me to the E.R. He told me to wait
- that he would leave right away and be there as fast as he could.
While I waited, I googled symptoms and messaged my sister (the family
researcher). By this time, I noticed that the left side of my face was
drooping, so stroke was one of the things on our list of "maybe's".
Guillain-Barre was also on that list.
I was immediately admitted when I got to the E.R., was completely paralyzed within 24 hours and
honestly - the next three weeks is a blur. The pain, and the
frustration of not being able to move and not having a diagnosis was
enough to make me want to give up. It was two and a half weeks (after
the second spinal tap) before all other possibilities were ruled out
and I was diagnosed with GBS. I was immediately given IV Immunoglobulin
and began to turn around. I never had to get a tracheotomy. One of my
brothers sat at my bedside and focused on two things - straightening my
fingers and making me breathe into that tube. I came close, but that
was a bullet I am thankful to have dodged.
I only spent a week in
rehab. I did my morning OT and PT, napped, did band workouts in my
room, napped again, went back to the workout room at night, and napped
some more. Thankfully, I had been going to the gym often prior to my
hit with GBS because I credit my weight-training classes with my quick
recovery - it is amazing how fast muscles atrophy; if I could tell
families of future GBS patients one thing, it would be to work their
legs and arms while they are in the hospital (preferably right after a
dose of morphine)!
I recovered at home for the next couple of months
- doing OT and PT on my own and a lot of yard work. I hit my one year
last month and am still only working part time. I take 400 mg of
Gabapentin and 50 mg of Tramadol at night, when my leg, feet, and lower
back pain are the worst. I will never be full time - chronic fatigue
sets in after only a few hours of mental work. I can walk for long
periods of time and do other hobbies for hours, but nothing tires me out
like focusing mentally.
I am about as good as
I'm going to get and I'm okay with that. It has been and will continue
to be a long journey and I hope that all who struggle with the
after-effects of GBS find comfort in groups like this. I certainly do
and I thank you, @thegimpygirlwhocould for putting this effort
together. We are a very small community and I have found comfort and a
sense of belonging through reading everyone's journey.
