21 Months with Guillain Barre Syndrome

By any measurement,  October was my best month of recovery since this long battle with GBS began. Rarely did I experience any of the numbness that has plagued me for nearly two years. My energy was, for the most part, better. I was able to participate in some of the family events, like making apple cider at the in-laws last weekend—something I haven’t been able to do for the past two years (the first one due to recovering from a dislocated shoulder, and last year due to GBS). I even had the cold that’s been ripping  through the entire population of the Pacific Northwest, and that didn’t trigger any kind of relapse.

The only GBS-related issue I still struggle with, relates to my eyes. I wanted to start doing my rehab exercises for them this past month, but by the end of every day, my eyes are just so exhausted from all the computer work, that the only thing I want to do is close them.

It seems like most of the issues affecting me these days are ‘normal’ ones: the aforementioned cold, the acid reflux I’ve been treating, and a sore neck.

The cold will, I hope, go away on its own… sooner rather than later.

The acid reflux is due to the hiatal hernia discovered last month. I’m on new meds for that, have lifted the head of our bed four inches, and have changed my diet to eat fewer tomatoes, fewer citrus products, no fried foods, smaller, more frequent meals, cut out chocolate (for the most part), and have continued to abstain from caffeine in all its forms. On days where I break my new diet (by overeating or having a hot cocoa in the afternoon to get me through the day), I really feel it at night in the back of my throat about 3:00 in the morning. But if I stick with the diet, I sleep much better, and wake up feeling rested.

My sore neck I’ve been treating by continuing my nightly regimen of stretching and by trying to find new pillow for my bed. I’ve bought four new pillows in the last month, including one of those gel-bead pillows that are supposed to conform to your neck “perfectly”. That one worked for about three hours each night, then transformed itself into this rock-solid torture device that couldn’t be less comfortable. I’ve settled on an old pillow I’ve had for years, that used to be too soft, but now seems just about right. It does, however, tend to encourage side sleeping, which is something my shoulders don’t appreciate in the morning. It’s still not perfect, so I’ll keep on searching.

As each month goes by, GBS slides further down my list of primary concerns. Normal life, with all it normal joys and concern seems to be gliding back into place, albeit a little more slowly than I wanted. I’m still conscious of the GBS, and back off whatever I’m doing when I approach the edge of overdoing it. I’ll probably never be completely confident that this is totally behind me—after all, I still fear a relapse of the mono I had in 1997, and that only lasted 4 months. I’ll be on my death bed due to natural causes in fifty years, and still be worried about it. But at least now I have faith that I’ll get through this phase, and will be able to do normal things at some point in the future. There were many days in the last 21 months where I couldn’t say that with any sense of confidence.

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