6 Weeks and an Anniversary of Sorts
Yesterday was both the six week mark since I felt my first effects of Guillain-Barre Syndrome, and the one year mark since my ‘Year of Pain’ began. You see, on my way to catch the train home from work on March 14, 2011, I slipped and face-planted into the sidewalk, splitting my chin and lip open. The cut on my chin eventually became home to a rather nasty staph infection that took five and a half months to cure. A week after my fall, I had surgery on my left foot that hobbled me for two months. In August, I dislocated my left shoulder, postponing the surgery I had scheduled for my right foot from August to October. I was hoping the Year of Pain ended December 31. Alas, February 1, 2012, GBS snuck in.
Okay, so the Year of Pain respects no calendar, but it must be over now, right? 366 days (giving it the benefit of the doubt for the leap year). I’m done with it. Life may now resume some sense of normalcy.
Not so fast, Mister. We still have this GBS thingy to recover from.
And how is that going, exactly?
Well, the week didn’t start off too well. I had three bad nights of sleep in a row, and that lack of rest made my symptoms worse, and that made me grumpy and angry and frustrated. Then, I had two good nights of sleep in a row, and I felt energized and the symptoms lessened. Today, I actually had to be careful I didn’t overdo it and set myself back again.
The numbness is now pretty much confined to the front of my left leg as a constant, and pops up in my feet and hands after immersion in hot water. My nose goes numb if I talk too much. My eyes still take a lot of energy to stay focused on text, so I haven’t resumed reading yet, though I am on my way to my optometrist this afternoon to see if I can get a temporary prescription for glasses (BIFOCALS!?) to get me through until my eyes get back to normal. Really. Just till then. I am not THAT old.
I wake up between 1 and 5 every night with little splinters of pain in my fingers and toes. It never lasts long, nor is it very intense. Someone on the GBS Facebook page described their pain as little kitten bites. That’s pretty accurate. Every once in a while, it’ll feel more like a lance of molten metal running under my skin, and those will wake me up, but for the most part, it’s not as bad as I’ve heard it can get. It’s all part of healing. I hope.
I’m not sure if it’s because I am not in deep sleep a lot during the night, or a result of the GBS altering my brain, or the fact that I am not writing these days, but my dreams lately have been very intense. The bolt-upright in a sweat kind of intense. I expect it’s a little of all of the above. As much as I appreciate the muse from the dream-world, I’d really like to get sleep right now. Come back later, please.
I’m still just working part time, 3-4 hours a day. Some days a little more. Some days a little less. Perhaps next week, I’ll hit 4-5 hours a day, but I’ve learned to set no expectations. I do what I can, so long as it isn’t so much that I am not healing more everyday.
Two weeks ago it would have taken me three days to type this entry. This took me less than half an hour today, and though my fingers are a bit fatigued, they aren’t numb. Still, now is a good time to stop. Before I hit that ledge.
Not that I’ve ever tried it, but I wonder if Ambien would help you sleep more soundly, or keep you from being woken by intense dreams. If rest is essential to healing, it might be worth asking your doctor…
I have heard nothing but horror stories about Ambien. In fact, a few years ago, I wrote a blog entry about a young girl I met who was permanently disabled after taking it just once. https://joebeernink.com/2007/12/11/serious-danger/. I think I’ll just take a nap now and then when needed.
Glad to hear your recovery is progressing, and I can so empathize with the one-thing-after-anotherness of the past year for you and the frustration of having to deal with the restrictions this illness has brought. My right wrist has been especially bad the past week or two, and I still sometimes struggle to accept that I can’t do everything I want to (like blogging as much as I would prefer!). Still, it’s good to celebrate that we can do more now than before. Anyway, I hope the sleep disruption stops, as of tonight! There’s nothing better than a good night’s sleep. Cheering you on from back home…
Wow! Im was thing Im alone, but a lot of people get GBS,
Ana, if you haven’t found the GBS Support group on Facebook at http://www.facebook.com/#!/gbscidp, you should really check it out. It’s been very helpful for me.
Have you seen the UK Support group on facebook. https://www.facebook.com/groups/7829609636/ You will find support there in the UK.
I hadn’t seen the UK site. I’ve found the GBS International Facebook page pretty enlightening, and it helped me get through the dark days. Hopefully someone in the UK can use it though. GBS is definitely one of those diseases where you feel very alone until you find those people who truly understand what it’s like to have it.
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