Three Months of Guillain-Barre Syndrome… and Counting
Today marked the 3 month mark in my battle with Guillain-Barre Syndrome. Well, actually, yesterday was the 3 month mark of the first symptoms, but it wasn’t identified as GBS until the next day, so we’ll call it good and move on.
At this point, I’m working about 6 hours a day, though I think that lately I’ve been pushing it just a bit too hard, and back-sliding health-wise just a bit. GBS is like that. It lets you push, until it doesn’t, then it laughs at you for overdoing it, and you feel like crap for a day or two or three. Then you start feeling good again, go a little bit further, and it whip-saws right back at you. At the beginning of last week, I felt like I could take on the world. So I did, and I’ve been paying for it ever since.
Today, I had an appointment with a neuro-opthamologist—an eye doctor who specializes in neurological issues. He put my through a long series of eye tests, including a series of strain tests that gave me a headache that I still have, 10 hours later. The news was good, for the most part. I seem to be recovering, and the new prescription my optometrist gave me a few weeks ago, seems to be the right one for the job. I do still have some muscle control issues with my eyes, both in focusing them, and keeping them in alignment. The muscles tend to tire quickly. My brain then steals energy from other parts of my body (i.e. my nose and fingertips) to compensate and allow my eyes to continue to work. Hence, when I work or talk, the tip of my nose goes numb, followed shortly thereafter by my fingers, then my arms if I push too hard. I spend a lot of the day either expecting to sneeze, or having an itchy nose, because one part of my brain is so confused from the lack of signals it gets when another part shuts down the sensation. It’s pretty annoying.
I have started to get outside just a bit more. Walks to the mailbox, or to the park around the corner with the kids, don’t completely wear me out, though I do walk more slowly than I used to. I’ve spent a few minutes each weekend pulling weeds in the flower beds. The fresh air and sunlight feels good, but I usually pay for that exertion later in the day.
I have been getting back to editing my latest novel. I’ve been doing a chapter a day during the week, just to feel like I am making progress. Not being able to write consistently for the last three months has definitely impacted my mood, but I think it has also made me a better writer because I am pacing myself, and taking my time. Last year I wrote 80000 words in 50 days. This year, I’ll be lucky if I write 5000 new words total. But they’ll be good words.
The only really beneficial thing about being home so much is that I have been scheduling in people to do work around the house. We had someone come out and seal the ductwork and add some insulation to the house. The carpets are being cleaned tomorrow. And, I’ve been getting estimates done on installing a photo-voltaic system on the house. I’m not sure I’m going to be able to afford it right now (hence the estimates), but it is something I would like to do. If we do it, it’ll make some great material for blogging about.
I still haven’t read a book since the end of January. My eyes just can’t take it, at least not as long as I am working six-plus hour days. I miss it, especially when I see that some of my favorite authors are releasing (or have released) books this spring. Hopefully by summer, I will have the energy to get back to it.
I think the biggest mind-shift for me in the last three month has been to lower expectations, and to not let that depress me. I’m a type-A personality. I’m go-go-go all the time. I expect to be able to rehab my way out of any illness or injury. I tend to forget on Mondays that I’m not supposed to sit for more than a couple hours at a time, and I sit down after dropping the kids off at school, and the next thing I know it’s lunch time. By Friday, I am a dead-man walking. I have to learn to take care of myself better during the week, and to learn that sitting and watching TV in the middle of the day, or taking a nap, or a hot bath, is not a luxury—it’s a requirement. I will not heal if I push to hard. That’s a hard lesson to get through my thick skull.
So I keep the NetFlix queue updated on a daily basis. I do have a hot bath every afternoon. I take a short walk every day. And hopefully, at my six month anniversary, my life will be back to normal.