Nine Months with Guillain-Barre Syndrome

Month number nine of my recovery from Guillain-Barre Syndrome was a little bit unusual. At the beginning of the month, due to a downturn in the work coming in for my employer, my position was eliminated. This wasn’t a complete surprise, since work had been slowing for quite a while, but still, for a couple of days, I was in shock.

But after those first few days, and a number of calls from recruiters, I realized that a) my skills were still in high-demand and once I was able to work full time, I would have no problem getting interviews, and b) that the only way I would get fully healthy again would be to take away the added strain of trying to work X hours per day.

Even though I had been able to work at least part-time since I got sick, I probably shouldn’t have been. I rushed back to work, not only because my family needed the money, but also because I was forever under the watchful eye of the fraud-detection department at the insurance company processing my long-term disability claim. I spent all of my excess energy (and some I didn’t have) trying to prove I wasn’t committing fraud—that I was truly sick.

What I should have done, was to take three or four months completely off work and focus on healing. But I didn’t know that then. I thought I was “taking it easy”. I thought that pushing right up to the edge of my limit would somehow strengthen me, and rebuild my reserve. What I believe it really did, was to extend my total recovery time.

If there is one piece of advice I would give to a person recently diagnosed with GBS, it would be to rest, rest, rest. Don’t ever over-do it. Don’t ever come close to over-doing it. Focus on your health. If you don’t, recovery will just take longer.

So for month #9, with no job to worry about, and really no choice in looking for work since I’m not able to accept a full time position (very few tech companies are interested in bringing on new employees who can only telecommute twenty-five hours a week), I rested more, and tried to take care of myself. Sure, I had setbacks… like the toe I hurt when I tripped, and the cold I’m recovering from now. Those took energy away from my body that could have better been used to allow the nerves in my brain to heal.

But I did see improvements…literally. I focused (pardon the pun) on getting my eyes to work correctly again. I did all the exercises my vision therapist prescribed. Those exercises actually got easier as the month progressed. They’re still not perfect, but the difference has been remarkable. I can read again. I just finished reading my third book in the last three weeks. I’m caught up on my backlog of periodicals. I’ve been blogging more consistently. I finished the edits on two of my novels. This morning, I started writing a new one. Writing for me is therapy, and I’m just so much more relaxed now that I am writing again.

My energy is better too, especially in the evenings. A month or two ago, by the time the kids got home from school, I’d be too exhausted to do much. Now, we can play games or hang out. I have the energy to hang out with friends on the weekend. I dreamed about being able to do that stuff five months ago. Now, it’s a reality. I still don’t do yard work, and my injured toe is preventing me from walking or swimming, but perhaps that is a good thing. It forces me not to push too hard this month.

Am I ready to go back to work full time now that the calendar has rolled to November? No, not yet. My fingers and cheeks still go numb from time to time, especially if I have a cold or something coming on. But it’s nothing like the relapse I had back in mid-August. I’m going to just take it easy for at least a couple more months, continue to write and possibly do some freelance work. But my focus isn’t on getting back to work right now. It’s on getting healthy.

And oh, that long-term disability insurance… still waiting on that… 6 months after my original application. If there’s fraud going on in this contract, it’s not on my side of the relationship.

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