Stress comes in many forms. We are all pretty familiar with at least some sort of stress. Bills, relationships, co-workers, deadlines, loss, fear, injury, worry. We live in a time where many of our stressors are mentally based. They aren’t usually starvation, exposure or mauling. Our bodies are designed for short intense bursts of stress like the later. We aren’t very good at handling the day-in/day-out constant stressors of the 1st world.
I came under an extreme stress starting in mid January which lasted the better part of two months. The circumstance of which I’m still having a hard time coping with, and which was vary rare. Then I got a random GI bug as a late April fools joke which caused me to be on the porcelain throne for 36 hrs. I recovered and went about life for the next two weeks.
The next three months up until now have changed my life. Two weeks after the GI bug, I developed tingling in my feet and legs, which proceeded to work it’s way up my legs and extended to my hands and arms causing weakness and lack of coordination for 3 days until I went to the emergency room. I thought I had pinched a nerve or something after a recent mountain bike fall, but the next day I was diagnosed with Gillian-Barre Syndrome via lumbar puncture. This is a relatively rare condition affecting 1 or 2 in 100,000.
Gillian-Barre Syndrome is an autoimmune condition where the immune system mistakes the myelin sheath, a fatty layer which insulates your nerves, as an invader and destroys it. When the myelin sheath is gone, the signal from your brain cannot reach its destination, which prevents movement causing paralysis. Other sensations were drastically affected as well. Numbness and tingling is a major component, hypersensitivity and pain as well, which doesn’t seem to follow logically, but it’s real. A loss of proprioception was the most disturbing. Not knowing where your feet or hands are in space plays horrible tricks on your mind in the dark when you can’t sleep.
I continued to decline through the first week of an initial treatment called IVIG, and only after the 5th round of the second form of treatment, call plasmapheresis (a blood cleansing machine similar to dialysis), did my decline seem to stop. At that point I was just thankful I didn’t need to go on a ventilator. I was unable to move my legs at all but I could still control my hands a little bit and was able to talk and ask for whatever help I needed. My ability to swallow was mildly affected but I was still able to eat.
After 3 weeks in the acute care part of the hospital, I was moved to the inpatient rehab part of the hospital where I stayed for 4 weeks. I also got an unrelated bout of Bells Palsy while in rehab just for kicks. Thankfully that resolved relatively quickly. I was in the hospital for a total of 49 days, which feels like forever when you’re waiting to get out. I spent half of April and the entirety of May in the hospital. I lost ~20 lbs even though my appetite was ravenous, I ate 6 square meals a day, and I didn’t have much fat to lose. It’s amazing how quickly you lose muscle.
I was sent home in a wheelchair since I was still unable to walk without a lot of assistance and I was scheduled for outpatient therapy 3 times a week. On my first assessment with outpatient therapy, I was able to walk with a walker and leg braces for 36 feet in 6 minutes. After 4 weeks of physical therapy plus my own exercises at home, I was able to walk 596 feet in 6 minutes. After 8 weeks, even further and faster with better balance. Walking only with a hiking pole and no leg braces.
This is dramatic improvement, and I am thrilled. Although I still have difficulty standing with my eyes closed as the proprioception seems to be the slowest in recovering, I can finally tell where my hands and feet are without looking at them which is a big relief. My hands and feet are still weak, but are getting a little stronger every day.
I ask, and get asked, when will I be “back to normal” and still have no answers. “It just takes time” is the most common response. I’ve read that it can take anywhere from “a few weeks, to a few months, or a few years” but it seems like the majority of cases get better after 6 month to 2 years.
I last rode ~12 miles on my mountain bike Sunday, April 9th. I was able to lift a decent amount of weight, run 2-4 miles at a respectable pace and lived a pretty active life. I’ll consider myself “back to normal” when I can at least do 1/2 of what I was doing before, and I’ll call myself 100% when I’m off nerve pain meds and I can do all the activities I used to do. And I will do them again, it’s just a matter of time.