Two Years With Guillain-Barre Syndrome

Yesterday marked the two year anniversary of my first moments with Guillian-Barre Syndrome—an odd tingling in my fingers and my lips that, within the next 24 hours, would spread throughout my body. Within 36 hours, I was in critical care, facing a long, difficult road to recovery.

When I pointed out to my wife that we were approaching this anniversary, she said “We’re not going to celebrate it, are we?”

No, we’re not going to celebrate it. But I did want to recognize that we’d made it this far. For certain, there were moments along the way I didn’t know what kind of life I would have at the two year mark. I was forced to live one hour at a time, one day at a time, as I struggled to walk, to see, to feel and to taste. Two years? That was forever… unimaginable.

But now, having arrived at this arbitrary, but important milestone, I can see that life is in the slow process of returning to normal. In fact, I didn’t write about this anniversary yesterday because I was out in my in-laws orchard picking up branches which had been pruned from the apple trees. The ground was covered in two inches of snow, and the air temperature hovered on the upper twenties. But I was out there working… not with the same speed and endurance I had three or four years ago, but with more energy, and less fear than I had a year ago. So that is something I did want to celebrate.

January, on the whole, was a tough month for me. I started a new job at the beginning of the month—a job which requires a longer driving commute, more stress, and more hours than I had at my last gig. The first two weeks were brutal. I battled insomnia, sometimes only getting an hour or two of sleep a night. I ended up trying the Nortriptyline again—something I had used last year when I started my first post-GBS job to help turn my mind off so I could get some sleep. The results were much the same. I broke the not-sleeping issue, but I after a couple of days, my nose started bleeding, and I just didn’t feel right. So I don’t take it regularly. I’ve found that if I sense I’m not going to sleep (it’s a self-fulfilling prophecy at that point), I can take a dose of it, and get at least half a night of sleep. It’s still not perfect… I’d love to sleep through the night every night, but at this point, I’m grateful if I get five solid hours, and two not-so-solid hours. Sleep, as I’ve said a thousand times, is key to recovering from GBS. If you don’t get it, the downward spiral is brutal and inevitable.

So what’s causing the sleeplessness? Is it my new job? Is it all the driving I do? Is it stress? Is it GBS? I don’t know for sure, but I’m guessing it’s an all-of-the-above kind of situation. I’ve had the same burning-skin symptoms in the middle of the night that I had last year, only this time, I also had a song stuck on replay in my head at a ridiculously high volume. I’ve had earworms before, but never at this volume or for an entire night. At least the Nortriptyline seemed to turn down the volume and broke the cycle.

On the good side of things, unlike last year when I started my first new job, I’ve been able to keep my exercise regimen going, and have added to it as time has gone on. I’m not in the best shape of my life, but I am probably in my best shape of the last few years (even pre-GBS). Keeping physically strong, even when exhausted or mentally fatigued, helps to prevent a downward spiral that takes more than a good night of sleep to alleviate.

Also, my foot has completely healed from the break I suffered in October, and I’m able to get around without issue. I’m still doing the ultrasound bone-stim treatments for a another week or so, but then I’ll be able to put that machine away and gain back a little more normality to my evenings.

So two years have gone by, yet the fight continues. I can’t say there are any days I don’t think about my GBS. I can’t say it has brought me more good than harm—who knows where I’d be right now with my family, my career and my health if I’d never had it. It has shaped my life, my work and my family in ways too numerous to calculate.

But hopefully, somewhere ahead on this road, there will be a time where I no longer feel the weight of those three little letters on a daily basis. That time is a lot closer now than it was a year ago. I’m not taking things one day at a time now. We’re planning… for next week, for next month and for six months out. That was impossible last year at this time. Maybe not impossible, but tempting fate at the very least. Now planning—living each day—seems natural. Life is moving on, and GBS will just be a part of it, until it isn’t.

One Comment on “Two Years With Guillain-Barre Syndrome

  1. Well done Joe,one day like you I hope to do the things I did before and a few that I didn’t .
    My social circle is much smaller now but more richer with real friends acquaintances I had before my GBS are now just that.I’m nineteen months in and not walking but am getting there and when I see posts from others with GBS on the mend it gives me real hope that one day in the not to distant horizon I also might just be able to walk the walk .

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