23 Months with GBS

Well, I had high hopes for December, but I caught some kind of bug in the middle of the month that knocked me down for about five days. Usually colds and such don’t aggravate my GBS symptoms that much, but by the fourth day, I was pretty numb, and my vision had gone all to hell. The symptoms quickly got better, but it put a pretty good scare into me. I’ll admit I panicked, and thought the worst was happening: that I was having another relapse. Of course, that wasn’t true—but for about 48 hours, the worry was there.

However, as the symptoms began to get better, I went into a bit of an emotional funk. Everything had been going so well. All it took was a minor cold to send my pessimistic brain spiraling out of control. I worried that had I been in the middle of some work deadline where I couldn’t step back, I would have been in deep trouble. I worried that my plans to gradually expand my exercise regimen to rebuild my leg strength would have to be put off indefinitely. I worried that these damn symptoms could just come back at any time, now, or a year from now, or three years from now, and this is just what life will always be like: walking on eggshells, hoping not to wake up the sleeping giant that can crush my life, and my family’s life, with one bad cough.

It was at that point that I looked back at my own blog… back to the entries from 2012 and from earlier in 2013, to get a feel for just how bad it had been, and how not bad it was now. Instant perspective. I mean, the symptoms I had in December were annoying, but they weren’t completely debilitating—nothing like last August when I had the worst of my relapses, or like July of 2012 when I still couldn’t work back-to-back eight hour days. And they certainly didn’t come close to February 2, 2012, when this whole nightmare began.

When I started blogging about GBS, I blogged because it was the best way to tell people who knew me, what was going on. Then I realized that there was a community of people out there all suffering from GBS. It was interesting, and therapeutic, to hear about their version of this disease. At some point, I continued to write because I was getting so many nice emails from people who were just starting their battle against GBS. My blog became their source for hope. When the doctors couldn’t tell them what to expect, my blog at least filled in some of the gaps, or provided information on how to get the care they needed.

Little did I know, all those months ago, that reading my own blog would help to temper my own emotions during a temporary downturn. I’m glad I wrote those entries, for so many reasons. And I’ll probably continue to write them, as long as GBS continues to poke its ugly nose back out every once in a while, if only to give it a punch right back in its schnoz. It’s a fight I don’t intend to lose.

One Comment on “23 Months with GBS

  1. That was so perfectly written. I so relate. I’m in month 26 with GBS. Don’t stop fighting and believing. Thank you for writing.

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