15 Months With Guillain-Barre Syndrome

When I set foot on the train to go to work for the first time in over fourteen months on April 8th, I didn’t know what I’d be writing in my Month 15 update. I knew it wouldn’t be more of the same “getting better slowly” notes I’d written the last 6 months. I hoped for the best—that I would be a little low energy for a few days, but pretty much normal after the second week. But I feared the worst—that after a few days, or a week, I’d have to back out of my contract because my GBS prevented me from continuing.

The good news is that except for one day (where I had a doctor’s appointment), I made it into work every day I was scheduled to, and was able to work forty hours each of my first three weeks. The bad news is that in each of those first three weeks, I had at least one day where I wondered if I’d be able to make it back in the next day.

The first week wasn’t actually too bad. I was excited to get back to work, though nervous for obvious reasons. The people are great, the work space is pleasant, and the work is interesting. What killed me the first week was all the walking. I should clarify that it wasn’t the walking around work itself, but the walking from the car to the train, and the train to the bus, and the bus to the office, and back again at the end of the day. Ascending and descending the stairs at the transit stations was more difficult than I remembered. I’d lost a lot more muscle, and lot more endurance in the past year than I’d thought. After four days of commuting, my energy was perilously low, and my legs were like so much Jello.

Two things saved me that first week: 1) My kids were on spring break and off to their grandparents for the week so I could just come home every day, grab some food, and crash on the couch until bedtime, and 2) Friday is a work from home day, and I’m capped (per my contract) at 40 hours per week. Since I put in more than 8 hours a day on days I’m in the office, that means I only need to work 5-6 hours a day on Friday. And I needed every minute of that first weekend to recover.

The second week wasn’t much better than the first. In fact, it was probably a little worse, since I didn’t get fully recovered from the first week before the second week kicked off. I had a couple of bad nights of sleep that week as well (less than 4 good hours of sleep), and each one of those bad nights put me further behind the eight ball. I’m not sure what was causing my bad sleep… Was it anxiety or excitement about work? Or nerve pain from the GBS? I’d wake up with my body on fire, as if my internal thermostat was running at 105F, but my temp was completely normal. I had no problem getting to sleep each night, but I’d wake up every night between 2 and 3 AM, and would be absolutely unable to get back to sleep. I’d watch the clock tick towards 5:00 AM and my brain would not shut off. I tried Melatonin before I went to bed, or as soon as I woke up in the middle of the night, but it had made no difference.

By the end of the second week, I was about as low on energy as I had been in months, and my symptoms had returned with a vengeance. I had numbness all across my face, arms and legs, and my legs were getting progressively weaker. Again, what saved me was my work from home / short Friday.

I recovered a little bit faster through that second weekend, but really wasn’t able to do much but lay on the couch and nap. I felt a little better than I had the previous weekend, but the trend was generally a downward slope. By noon the following Tuesday, I was in a panic. The left side of my face was completely numb… not tingly numb like I was used to, but dentist-Novocain numb. My left arm was getting progressively weaker as the day wore on, and I’d also lost feeling and strength in my left leg. I called my neurologist, and they were able to squeeze me in first thing the next morning.

I described my symptoms to her, and the situation with work. I knew that if I could just get some good, consistent sleep, I could get through each day, but I didn’t know if I was doing any long-term damage to my body. My doctor was fairly confident that that was not the case. It was more that I was just doing things that my body hadn’t done in a long time, and it would just take me longer to adapt to the energy burn. A lot of my symptoms were what my doctor considered more typical of primary symptoms during the onset of the GBS—symptoms that, for one reason or another, I didn’t necessarily have a year ago. With my physiology (i.e. my CMT), it’s really hard to know what a “normal” healing process would or should be.

We decided to try to treat the sleep issues first, figuring addressing those would allow my body to reset each night. She prescribed a very low dose of Nortriptyline, which we hoped would calm my nervous system without any major side effects, except for maybe a little drowsiness first thing the morning.

I took my first dose that night, and, for the first time in what seemed like forever, I slept until my alarm went off. I felt a little drowsy (as expected), but the numbness was gone, and I felt rested. My sinuses were a little dry, but other than that, I felt pretty good. Still I was happy I could still work from home on Friday, and rested a lot that weekend.

But I couldn’t stay on that medicine very long. After the second night, I started getting nosebleeds, and by the third night, the nosebleeds were a little worse. I’m not talking about gushers street fighters get or anything like that, but enough that I had to carry extra Kleenex around all the time. I also wasn’t sleeping that well. I still woke up around 3 AM, and instead of a relaxed dozing, my mind jumped around like a kid on a trampoline. By the fourth night, the pain and stuffiness in my sinuses became too much to bear, and I stopped taking the medicine. It took about six days for my nose to feel normal again.

Since I stopped taking the meds, my sleep has been a little better, and last week (my fourth week), my symptoms began to subside a bit. I wouldn’t say I’ve had any really good days where I feel symptom free, but I at least didn’t have any really bad days. That felt like progress. As long as I stay conservative on my energy burn, I’m fairly certain I won’t have any issue getting to work each day this upcoming week.

I should note that because of all the walking around on my commute, I’ve dropped about five pounds in the last month. That wasn’t something I had planned, but I’m now back to my pre-GBS/pre-2011-surgery weight, and a little worried that I may need to increase my calorie intake. I’ve also begun eating a lot more salads for lunch, trying to max out my B-Vitamin intake, which should also help my nerves to heal. There are two café/deli’s around my office with big salad bars that I enjoy grazing at, so that makes healthy lunches easier to obtain. 

And, as luck would have it, this will be the last week I’ll have to commute for a while. It turns out that the office I’m in is scheduled to be remodeled starting at the end of this week, and we’re all being asked to work from home until the end of June. For me, this is perfect. I’ll be able to focus on my work, and allow myself to recover from the first month. Hopefully, by the time July rolls around, I’ll be that much further along in my recovery, and be used to the long days.

I can’t have asked for a better situation for getting back to work. Like I said, the work is enjoyable, the people great, the money good, and the flexible work schedule perfect for me. I’ve seen some old friends on the train, and even swung by my old office to say “Hi”. Even with that, the first month saw a few more dips than that I had hoped for. I expect that I’ll have a few more bad days in the next month, but I’m really hoping that they become the exception rather than the rule.

5 Comments on “15 Months With Guillain-Barre Syndrome

  1. Well done Joe,you are proof that we can and will at some point get back some normality in our lives,hope you keep it up and things just keep on getting better and better for you and your family.i do enjoy your blog ray much and look forward to the ext update .

  2. Pretty much describes it! (the getting back to work part) and the reaction your body made…you are doing well at 18 months but then you are much younger than me…that’s the good news! But keep paying attention to rest and nutrition and expect setbacks every once in awhile. At seven years out, I am in the midst of one now and have just had to move back my schedule and return to working from home no more than four or five hours.

  3. > I had no problem getting to sleep each night, but I’d wake up every night between 2 and 3 AM, and would be absolutely unable to get back to sleep. I’d watch the clock tick towards 5:00 AM and my brain would not shut off.

    I’ve had sleep problems pretty much my whole life. Not much that’s worse than lying in bed stressing out about the fact that you’re not asleep. That sucks. However, the past several months I have developed a new attitude towards those times. Yes, it sucks to be awake when I don’t want to, BUT, on the other hand it’s basically the only time in my life anymore, ever, when it’s totally quiet, I don’t have to be doing anything, and nobody wants anything from me. That’s a hat-trick of conditions I can appreciate.

    So now, I just roll over so I can’t see the clock, lie there and enjoy the tranquility of it all. Sure, maybe I’m not sleeping, but I can at least enjoy the time. And then, because I’m not stressing about the time, I do usually fall back asleep eventually.

    I don’t know if that helps, but it works for me.

  4. Joe, I’m sorry to hear the challenges you faced through your return to work, and admire your persistence and dedication to staying the course. I’m glad you’ll be able to work from home for an extended period and avoid the strain of commuting. Here’s to continued progress toward good health.

  5. Pingback: Two Years With Guillain-Barre Syndrome | Joe Beernink

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