Six Months with Guillain-Barre Syndrome
Six months seems to be a mental milestone of sorts. For some reason, my mind has always associated ‘six months’ with “I really will be better by then.” And for the most part I am. But life is not yet completely back to normal.
We’ve been pretty busy this summer with family events and work. Summer in the Pacific Northwest is not something you really want to waste. After a fall, winter and spring cooped up inside—generally listening to the pitter-patter-sledgehammer of raindrops on the roof—even the most non-outdoorsy person feels the need to get outside and do things. For people recovering from GBS—people like me—getting back outside comes at a cost. Yes, you are out there doing things you weren’t able to do a month before… but you stop getting better. Your peak energy stops moving up. At best, it holds steady. At worst, it back-slides.
Frankly, the last few weeks I’ve overdone it. I’ve worked too many hours, tried to exercise a bit too much, and tried to do just a little bit more around the house and yard than I should have. The last two weeks have been a bit of a reality check. Some of the numbness returned last week, as did some of the tingling (which tends to keep me up at night, which tends to make things worse the next day, rinse and repeat.) It wasn’t nearly as bad as it was two months ago, thank god, but it was just a signal that I needed to take my foot off the accelerator. I needed to drop back to what was working to get me better to this point—mainly, sitting around. So last weekend, my wife took the kids to the grandparents’ house and I had our house to myself for a couple of days of watching movies and relaxing. That helped, a lot.
I’ve also decided that there will just be some things that I am no longer going to try to do until I am completely better, namely, lawn and yard maintenance. I finally bit-the-bullet and hired a lawn service firm to cut the grass and pull the weeds so that I don’t have to use up my precious energy on something that, while I enjoy doing it, shouldn’t be my top priority right now.
On the good news side of things, the issues with my eyes have definitely improved the last few weeks. The exercises I’ve been doing as part of my vision therapy seem to be working. I no longer have the eye-strain headaches unless I work a lot longer than I should. My eyes still jump a bit when using my peripheral vision, but it is more manageable. I saw my vision therapist this last week and he gave me even more to do, so I’m expecting that I will continue to see big changes. I’ve also started working my way through some of my reading backlog, starting with the periodicals that have shorter stories in them so I’m not tempted to sit down and read a whole novel in one sitting.
Upcoming later this month is another visit with my neurologist, and a follow-up MRI of my brain to ensure that the damage is healing. Hopefully, by the end of September, I’ll be back to reading more consistently, and able to go back to work full time, or at least capable of working 40 hours a week from home. I was around 37.5 two weeks ago, but like I said, I might have been pushing it just a bit, so I backed it down last week a bit, and felt better.
Things are still working their way back towards normal. The real sign that things are back to the way they should be will be when I resume writing on a regular basis. It’s not that I can’t write right now, it’s that I still have to budget my energy between my paying job and my writing, and the paying job has to win—at least until someone starts paying me to write on a regular basis.
I am planning to start an edit of my book Labeled in the next few weeks to get the words flowing again, then I’m hoping to get into a new story by the end of September. I have so many ideas right now, I don’t quite know where to start. But I can feel the need building, and once that happens, it doesn’t stop until the story is done.
In case you’re coming in late to this story of my encountered with GBS, here’s a set of links to the previous entries in the series. February seems like a very long time ago.