14 Months with Guillain-Barre Syndrome

In my update last month, I talked about how life was beginning to return to normal. That process continued through March.

As I announced last week, I will be starting a new job next Monday, April 8th. This is a huge step for me, and I can’t wait to get back to it. I spent the better part of last week learning about the technology I’ll be working with, and the day-long efforts didn’t cause any lasting impact to my energy levels.

We have, however, had a nasty cold circulating through our household during the last week. My son missed two days of school, my daughter has been coughing on-and-off, and my wife has been on the couch for the last three days. I’ve got a bit of a sore throat, but it hasn’t knocked me out (yet) like the colds did last summer, so that feels like progress as well. Knock on wood.

On Saturday, since my wife was sick, I did a full trip to the grocery store for the first time in over a year. I’ve been to the store quite a few times, but not for a full “the-fridge-is-empty” restocking since the onset of GBS. I felt a little bit tired after that, but I still had enough energy later in the day to play outside with the kids and to walk down to the local schoolyard after dinner so the kids could play on the playground equipment. It’s these type of subtle changes that really build my confidence in my recovery.

Yesterday I went for my first bike ride in a couple of years. I had to pedal slowly, since I was riding with the kids down to the park, but 6 months ago, I wouldn’t have dreamed about getting on a bike and riding the two or so miles. My balance still seems off a little bit, but I ‘m not sure if that’s the GBS, the cold, or the CMT. It does seem better than it was a few months ago, so I suspect the recovery from GBS is continuing.

I’m still not at the point where I’m going to tackle any big outdoor projects, and I’m not yet ready to go on any big hike in the mountains. Those are just unnecessary and foolish risks to take. But my body continues to recover, and I feel stronger every week. I’m very careful not over-stressing my eyes by doing a lot of reading. This is probably my number one concern about going back to work.

The changes through March definitely made me feel like life is shifting out of neutral. I’m still in first gear, but it feels really good to be back on the road. I won’t be putting the hammer down for a while, so pass me on the left if you need to. But keep checking your rear-view mirror. I’ll be catching up soon.

6 Comments on “14 Months with Guillain-Barre Syndrome

  1. Great story. Thanks for sharing. I’m in month 16 and enjoy reading your updates. Hang in there and don’t stop fighting!

  2. Joe – have found your blog very interesting as I start to plan my return to work after 9 months off with GBS. The many unknowns that are the hallmark of GBS make it very frustrating!

  3. I really enjoyed reading this! I experienced GBS almost 3 years ago, it’s almost reassuring to know that others know how I felt… as horrible as that sounds. Best of luck with your recovery 🙂

%d bloggers like this: