Five Months with Guillain-Barre Syndrome
Five months. It seems hard to believe it’s been five months. Shortly after I was diagnosed with Guillain-Barre Syndrome, and I was worried that it would be years before I got better, one of my former coworkers told me on Facebook that they knew someone with GBS who was pretty-much back to normal in six months. That gave me hope that I would be able to resume a normal life within a calendar year, and it wouldn’t be something I would struggle with the rest of my life.
At five months, I think I am much closer to being normal (and closer to the 6 months for recovery) than I am to where I started (and the years of recovery). That is to say, I am well past 50% better. Closer to 80%, I think. There are still things I can’t do, and things I can do, but not for long, and things I can do that I really feel the next day. But those are getting to be fewer and fewer each week.
Work-wise—which seems to be my best measuring stick because I do it every day, and have statistics on my timecard—I was up to 36.75 hours this week, between Monday and Friday, including one day of 8.5 hours, which absolutely knocked me on my ass that night. It was just one of those days where customer problems started late in my day, and kept me online far longer than I wanted. I’m not ready for back-to-back 8 hour days yet. 7 still seems like a practical limit for me—a limit where I am still getting better each day, and not just surviving.
Below is a graph of my working hours since my diagnosis. Those first couple of weeks, where I tried to work 20-25 hours, were absolutely insane, and I don’t recommend anyone with GBS trying it. This week creeps up to 40 because I had production problems yesterday and this morning that required me to work, again, unexpectedly. The trend is promising, though. Everyone’s recovery from GBS will be different, but for me, adding a half-hour per day per week (i.e. 2.5 hours per week), was probably the right slope for my recovery graph.
Personally, I have been able to start doing a few other things as well. I started going for longer walks this week… all the way around the block, instead of just to the mailbox. Soon, the lengths of the walks will justify putting my leg braces on before I go out so I can walk further. That’s part of the plan for the next couple of weeks.
I’ve been able to go out and play catch with my baseball-addicted son for 10-15 minutes at a time recently as well, though I have to be careful not to try to overreach and pop my weakened left shoulder back out. Yesterday I did my first, very short, session of weight lifting to try to rebuild the shoulder muscles I’ve lost over the last 5 months. It’ll be a few weeks before I go through a full workout, but it was nice to do a bit without having to spend the next 3 hours on the couch recovering. I also cut the grass and did the trimming this week, though that was split over multiple days, and wiped me out pretty good each day.
The biggest problem remaining is still my eyes, and my inability to read for any length of time without getting an eye-strain headache. I got a new prescription for my reading glasses, and that seems to help a bit, but not completely. I’ve been slowly reading a novel, a chapter or two at a time, and only on the weekends, when my eyes aren’t as fatigued from work. I start Vision Therapy (yes, there is such a thing), the week after this, and hopefully the therapist and I can come up with a plan that gets my eyes back to normal sooner, rather than never.
I’m hoping that July is the month where I start to get back into shape, and move beyond healing into rebuilding. So if you see me out and about more, know that I’m not completely better yet, but I am getting there.