It’s now been three weeks since I had the first symptoms of Guillain-Barre. Here’s a quick update on what’s going on.
I am still recovering. I have much less numbness/weakness than I had last week. If I overdo it, or immerse myself in hot water, my hands and feet will go numb again, but it fades pretty quickly. Early mornings and evenings are generally the hardest parts of the day. I have a little bit of numbness in my hands when I wake up. By the end of the day, fatigue has me restricted to the couch / short trips around the house. Occasionally, my left arm will go numb for a few seconds if I move it in certain directions, but I think that’s more related to nerve damage done when I dislocated my shoulder last summer.
When I was healthy, I could get by on 6.5-7.5 hours of sleep per night. I am closer to 9 hours now, and sometimes 10, and I take a short nap after lunch. I’ve been working myself back up to 4 hours of work from home per day this week. Anything more than that, and I fall apart, especially if I go more than 2 straight hours in front of the computer. Work has been very understanding about it, and I really appreciate that.
I had an appointment with my neurologist last Thursday, and unfortunately, the test for the Miller-Fisher variant of Guillain-Barre came back negative. I say ‘unfortunately’ because it means we still don’t have an official final diagnosis of GB. There are very few ways to confirm it absolutely, especially with people who already have CMT, and that test was one of them. Based on the initial presentation of symptoms and the progress to date, we have every reason to believe that this still is Guillain-Barre. The MRI was clear when it came to demyelination in the brain during that first day, so that should rule out MS. If the symptoms don’t continue to improve, or somehow get worse over the next 6 weeks, we’ll do another MRI and go from there. Otherwise, we’ll do another MRI in 6 months.
The main challenge is for me not to overdo it right now. I want to work. I want to write. I want to get back into shape. At this point, however, I haven’t even tried to walk down to the mailbox. I’d love to be reading books by the dozen right now, and writing reviews, but I’ve found I can’t keep my brain and eyes focused on reading for very long. They just tire out. I want to blog about some current events, but I fear my arguments aren’t quite as organized as I want them to be. I just have to be patient.
In the meantime, I’ve been watching TV. A lot of TV. I’ve seen a lot of documentaries on Netflix Instant Watch, and am whittling down my Netflix DVD queue. We try to time it so something new is always coming within the next day or so. I try not to watch stuff that is a complete waste of time, but have gotten a few movies that somehow made my list, but wouldn’t have been on my wife’s list. There’s probably not going to be a better time to do that.
I’ll admit that there have been some rather frustrating moments, but I just have to remind myself that at three weeks, I’m doing extraordinarily well compared to some people who have had GB. I’ve read about people who have taken months or years to heal to the point of being even partially functional. Sure, I do still worry that there is a 1% chance this isn’t GB, but that is not something I can control, and I found that having switching from worrying all the time to having a more positive attitude, really helped my body to recover more quickly. That and laying around doing absolutely nothing all weekend.
Hopefully, by this time next week, the numbness will be a thing of the past completely, and I’ll be closer to getting in full days. Then I can justify getting some editing done on Nowhere Wild, and work it into the shape it needs to be in to go to publishers sometime this spring.
One day at a time. One week at a time. And we’ll be through this soon enough and back to normal.