A Year with Guillain-Barre Syndrome

A year ago today, on what was supposed to be an ordinary Wednesday morning, I felt the first indications that something was wrong. My lips and my fingertips had gone numb. At that time, I shook it off as a bad night of sleep. Little did I know that 24 hours later, I’d be in the hospital emergency room, or that 36 hours later, I’d be in critical care, or that 365 days later, I’d still be recovering. It’s been a long year.

I’ve documented all my GBS related experiences on this blog over the past year. There have been nearly as many ups as downs, and you can read about them all here. I’m not going go into all of the history. What matters is where I am now.

I’m still recovering, but I’m a heck of a lot closer to normal now than I was 363 days ago when the symptoms peaked. I can feel my legs and my arms. I can walk without my legs going numb or shaking with each step. I can talk without my face going numb. I can type without my fingers going numb. My energy levels are up, and my family and I are starting to resume a much more normal life. I still have occasions where I experience some numbness, but, for the most part, I’m able to ignore them. They go away in short order with a little rest.

Since last month’s update, I’ve broken through the plateau on which I found myself stranded in November and December. I kept up with my physical therapy I started in December, and my muscles have responded. My neck, my back, and my shoulders, which suffered considerable atrophy over the last year, are very close to as strong as they were prior to my illness. I’ve dropped a couple of pounds of sedentary fat from around my waist, and have even gone in a notch on my belt. My body is really starting to feel like it’s ready to get back to it—whatever it may be.

The biggest challenge I have remaining is with my eyes, which require more frequent breaks than they used to. I used to be able to plop myself down in a chair for six hours and read a book. Now, forty minutes is my limit. Some of this may be because my vision prescription has changed yet again, and I will be getting new glasses very soon. Hopefully, that will help reduce the strain enough to allow for more normal reading patterns to resume. Computer work doesn’t seem to bother me quite as much, as my eyes move more and that reduces the strain.

One of the things I’ve done in the last two months is that I’ve added more vitamins and supplements to my daily diet to try to help my eyes, including fish oil, flax oil, B-Complex vitamins, calcium to help my toe heal, and, of course, a daily vitamin for the rest of me. The fish oil definitely seemed to changed the chemistry of my tears, which helps avoid dry-eye symptoms, but the returns have diminished over the last few weeks, and I’m experimenting with some different brands and eye-drops to see if I can get the tears flowing again.

For February, I plan on getting in some aerobic work on my elliptical machine to rebuild my stamina. I’ve been holding off on this in January, as I’ve been recovering from the broken big toe sustained in October. The wraps come off that next week, however, and I plan to slowly build back up to where I was pre-illness.

There are things that are still massively different about my life from a year ago. I used to drink at least one cup of coffee a day. Now I rarely have coffee, and if I do, it’s decaf. Caffeine just messes with my body a bit too much. I used to have the occasional beer, but that too, has fallen by the wayside.

At this time of year, there’s not a lot going on outside that demands me to spend an substantial energy. At the end of last summer, I had outsourced the lawn care. That may or may not continue once the weather improves. It depends on my energy levels and employment status. I miss cutting the grass, but not enough to jeopardize my recovery by over-extending myself.

Multiple people have said over the last few weeks that I look a lot better than I did even a couple of months ago. I attribute that to the exercise, the improved posture, and the improvement in attitude that comes with being able to do more things. While I figure my recovery will continue on for a few more months, I have few doubts at this point that I won’t soon be able to do most of the things I did before I got sick. I do know that I won’t take my health for granted in the future, and I won’t waste good days doing things that don’t matter.

It will be really nice when I can discontinue this series. Soon, blogging about what I am doing will be all the evidence people need to know that my recovery is going well.

A year to recover from something is a long time. But it’s not forever, and for that, I’m truly grateful.

11 Comments on “A Year with Guillain-Barre Syndrome

  1. Great that you are doing so well may your good health continue,I’m ina battle with GBS myself and hope to be at the stage you are at one day .Well done.

    • Hi, my name is mike and my email;punisher196723@yahoo.com. I was also dignosed with GBS about jan 10 2013,but it started a week before with my toes and fingers getting num and the tingling, when I couldn’t take the pain & the feelings any longer I when to emergency thats when I find out that it was GBS. I thougth it was another heart attack symton bcause in 2010 I suffer a heart attack. Which I’m fully recovered from thanks god. Now I’m figthing with GBS. Is hard to deal with, specially that I’m in texas and all my family is in N.Y,thanks for my mom and my 18 yr old son that came from N.Y to texas to give me support.My mom went back to N.Y and my son stayed for 3 month to help here and there.My wife was deployed to adganistan,but when she find out about me she asked for an emergency leave to come back to texas,now ones she got here she told my doc. to give her a letter vand that she was going to take care of me and my health,and in 3 days she took my 12 yr old son and left to n.y and broke up with me. Now she wants me to get out of the house.Anyway I’m taking care of that situation legally. I will continue my recovery a day at a time with gods blessings and everyones help. thank you and god bless your family.

      • Stay focused Miguel i know this is easy for me to say but it is the only way,if you give up it will take you much longer to recover,other things going on in you life can be looked at later right now it’s your health that needs all you energy,keep the faith man you can doi it.All the very best to you AJG

  2. I’m so happy you leave insight I have GBS myself n just got use of my hands and bowels and lungs back, I still cannot walk though, how have u coped with all of it?

    • Amanda Mae,
      I would not have been able to do it without the support of my wife and my family. But I was also not in nearly as bad of shape as you are. I got lucky there, and I really appreciate that. Take it one day at a time. Make sure you have doctors you trust. Don’t hesitate to ask for a second opinion if you feel you need it. Good luck, and I hope you are feeling better soon!

      • Amanda Mae, I wish you a speeding recovery,my name is Miguel Mendez I also was dignosed with GBS on jan 10 2013. It is painful in every way,just hang in there and have faith.

  3. I am 14 years post acute GBS. I had one of the very severe cases but am able to walk, drive…and all the other good stuff. I also work more than full time so I cannot complain! I have many lingering effects but am thankful each day, just the same. Best of luck to you!

    • I am 4-yrs post severe gbs; severe atrophy but beginning to walk w/braces & walker; still cannot move/use below knees/elbows; have you tried aminopyridine or rHIgM22 antibody?

      • Jon,
        The only treatment I received was IVIG. The first one, in the hospital on the day of diagnosis for 5 days, then another course in October, 9 months later, which didn’t seem to do anything for me. Other than that, it’s been rest, vitamins and therapy. But again, I’m one of the lucky ones. I lost feeling but had no paralysis. I hope things start coming back for you soon.


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