3 Years with Guillain-Barré Syndrome

Just over three years ago, I wrote a blog entry chronicling my first three days with Guillain Barré Syndrome. In it, I wrote that recovery times vary from 3 weeks to 3 years. I obviously didn’t heal in three weeks. My process took much longer. At the three year mark, however, I can say that my recovery is pretty much done. That’s not to say I’m completely back to normal, but, considering that 36 months ago, I was walking with a walker, unable to see well enough to read, and sleeping 20 hours a day, I’m doing pretty well. Things have stabilized—for the better.

I do have some long term side effects from the GBS. My eyes aren’t what they used to be, and when they get tired, they tend to jump a lot and make it hard to read. My balance is way off, especially in the dark. That could be related to my CMT (Charcot Marie Tooth Disease) as well, since it does cause both balance issues and numbness in the extremities, but I have no doubt the GBS exacerbated the issues. I don’t have quite the stamina I used to have when it comes to physical exertion, though that could just be a side effect of getting older. When I get tired, I still get numb patches in my cheeks and in my left leg. If I really overdo it, my nose goes numb. The feeling comes right back if I rest even for a few minutes, but it’s my signal to sit down, and take a breather.

I’ve definitely made some changes to my life that have helped to mitigate some of these long term effects. I moved closer to work so I wouldn’t spend so much energy commuting. That was probably the best thing I did to push over the hump. It’s amazing how much energy being stuck in traffic two-plus hours a day can steal from your life.

Last summer, I also cut gluten from my diet. My joints had started to swell and become painful—maybe from the stress of my commute, or maybe from the GBS, or maybe from some other kind of auto-immune reaction. It took a while to figure it out, but once I cut out gluten, most of the pain went away, and the swelling subsided. When I get really stressed out, it comes back a bit, but it always goes back down, as long as I stay off the wheat.

Along with the gluten, I’ve also cut most of the “good stuff” from my diet. No more alcohol, no coffee, no black tea, no soda, very few refined sugars. I eat a lot more vegetables and fruit and  proteins. I still have a weak spot for ice cream and gluten-free brownies, but I try to limit that to a couple of times a week, if not twice a month. Dining out is ridiculously hard, but I try to look for things that are GF on the menu, and if they aren’t labeled, I try as hard as I can to pick the least likely foods to have gluten. I know within a couple of hours of eating whether or not there was gluten in the food. The pain comes back that quickly.

But overall, these changes have been easy compared to what could have been the worst case scenario all those months ago. There were days where I didn’t know if I would ever be able to walk again, and days I worried that I would never be able to work or write or even read again. Those worries are gone now, and with them, the other stresses in my life don’t seem so large. It’s incredible what you can cope with when you have the perspective of history. The weekend before last, we moved into our new house, and my Microsoft Band said I took about 22500 steps in one day. Three years ago, 500 steps would have put me back in critical care.

I don’t blog a lot about my GBS anymore. The therapeutic value of doing it is gone, and frankly, I’m just too darn busy to focus on the negative all the time. But I thought this month I should at least let people who followed me through the worst of it, know that I did come out the other side of the tunnel. Hopefully, those who are just starting their journey with GBS, or are in the midst of their struggle, can gain some solace from my story of recovery. It’s a long road, but you are not alone.

One final thing. Here’s a picture of tonight’s sunset from my front porch. Seemed a fitting way to close out my GBS story. Simply amazing.


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