17 Months with Guillain-Barre Syndrome

If you’re checking in for my monthly update on my recovery from Guillain-Barre Syndrome, you’re in the right place. Today marks the 17 month-mark in my journey.

17 months ago I was laid out in a hospital bed with little-to-no feeling in my arms, legs, face or hands, and worried if I was going to be like that the rest of my life.

Yesterday I played catch with my son at the local ball fields. Twice.

That’s definitely a good thing, but I’m still not all the way back. I still get numbness in my arms and face, and sometimes my legs when I overdo it. My left eye still jumps when I try to focus it on something close up, especially first thing in the morning. In general, I have less energy than I did before I got sick. I’m not yet cutting my own grass, and I wouldn’t dare go hiking in the mountains. Going to the ball field is about right for what I can comfortably do, right now.

I worked from home at least 3 days a week in June, and not commuting helped save energy. But I also tend to be a lot more focused when I’m working from home, so the intensity of my work goes way up, meaning the energy usage is a bit of a wash. I also was treated to another chest cold (which I am still recovering from) and that has sapped my strength the last week or so. It was one of those colds that wakes you up during the middle of the night coughing, so not only was I sick, I also couldn’t sleep well—a nice double-whammy.

I haven’t been blogging much because I’ve been working pretty hard, both for my day job and on writing. I’m still in the middle of editing Nowhere Wild, and am on-target for finishing the edit by the end of the summer if all goes well. But by the time I ‘m done work and writing at the end of the day, my eyes are shot and my brain is tired, and blogging just has to wait.

One change that will be happening in July is that I will be getting another prescription for my glasses—one that I will now be required to wear all the time. It’s a progressive lens: one part of the lens is for daily wear, one is for computer work, and one is for reading. I’ve noticed that I’ve been straining my eyes quite a bit just walking around, and I hope that my eyes will thank my for relieving that stress by using less energy.

I’ll be returning to my normal 4 day a week commute starting tomorrow. That makes me a little nervous, as I’m not feeling as energetic as I want to be today because of the chest cold. I’ll take it as easy as I can this week, and try to find the right pace to keep things going, and healing, despite the increased energy requirements.

That’s all I’ve got for now. Have a great week!

5 Comments on “17 Months with Guillain-Barre Syndrome

  1. I had gbs in dec 2011 I was hospitalized for 3 months had to learn how to walk and feed myself all over again !! I was in a self induced coma for 3 weeks on a ventilator then finally put in a trach I still get numbness in my hands and legs and still weak not able to work yet but hopefully someday!!!

  2. I”Ve been trying to recover from GBS for 6 years! and I still can’t work or function properly, and ahve recently declined badly.(think it was from the move to Toronto 4 weeks ago) so it helps to read about some others, tho I do tend to struggle with people who are only sick for a year or 2. Envious I guess?! but I get over it cause I remember the first year or two, I would have liked some encouragement, cause it s traumatic no matter what!!! but I was completely alone in isolation, only my 19 year old daughter to take care of me! I was expected to die, wanted to die, but didn’t die! 🙂 was paralyzed in a wheelchair, but got as far as working for a year and a half, tho it was pure torture every day!! That was 2 years ago. No where near working now. I am trying to raise awareness, so if I can share some of your story, that would be great! You write well, and are relateable!

    • Hi Bernadine… feel free to share my story. I was very lucky in that the doctors in the ER figured out what I had within an hour, and started treatments shortly thereafter. That saved me from plunging over that initial cliff. I did have survivors guilt for a few months after initial onset, when I thought all the symptoms would be gone in a couple of months. Now, I’m thankful I can do what I can do, and so glad they saved me from full paralysis.

      If you haven’t checked out the facebook gbs support page already, I recommend that you do. They really helped me to get through those early months. http://www.facebook.com/gbscidp

      Good luck!

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