I was diagnosed with Guillain Barre Syndrome on February 11th, 2017 after several days in the hospital and allllllllllllllllllllllll the tests. When I was diagnosed, I was reassured that 90% of GBS patients make a full recovery. I don’t think “full recovery” is an appropriate term to use because it gives us false hope for the incredibly difficult road ahead. My two-year anniversary is in a few months and I continue to fight through the lasting effects of GBS even though I was young and healthy when I was diagnosed and have pushed myself every day to try and overcome this invisible beast.
That being said, there are some tips that I would like to share with other GBS fighters that I’ve learned in my own battle.
Find a full-size mirror and make it your new best friend. When I asked to do my therapy in front of a full-size mirror while I was in the intensive physical therapy ward, my progress grew exponentially. After I was released from the hospital, I continued to practice walking in front of my full-size mirror at home. I also did my facial exercises in front of that same mirror. I still do my facial exercises in front of that mirror and now I do other exercises as well. Your brain has to re-learn how to move every part of your body that GBS touched, which for many of us is our entire body. How is your brain suppose to know that you’re not moving your legs correctly if you don’t show it? Including the mirror in my therapy has been an absolute game changer.
Volunteer. A week after I was released from the hospital, I was on a plane to Cuba to chaperone a college mission trip. Now, I don’t recommend that everyone with GBS should go to Cuba right after you get out of the hospital, and a ton of people thought I was crazy for doing it. But helping other people is the best way for you to help yourself. The worst thing you could do would be to sit at home and feel sorry for yourself. You need to be with other people to take your mind off what you’re dealing with. And for me, the people in Cuba showed me so much love and compassion that it was impossible to not be happy. I guarantee that they helped me way more than I could ever help them. So, find a soup kitchen, read to kids, volunteer at an animal shelter… It doesn’t matter what you do, just do something.
Monitor your skin. Since GBS destroys our nerves we’re left without a lot of feeling on our skin, this makes it easy for injuries to occur and us not even realize it. I can’t tell you how many times I’ve burnt my fingers/hands in the past 22 months. Even as I’m typing this, I have a burn blister on my left pinky because I left my pinky on a hot pan and didn’t realize it until it was already burned. Watch yourself. I’ve gotten incredibly bad blisters on my feet that I couldn’t even feel until they were already infected. Monitor your skin and make sure you’re using good soap and lotion to keep it clean and moisturized.
Strength training. I don’t know about you, but I lost just about all the muscle in my body. If I want to get back to living an active lifestyle, then I have to build it back. I didn’t touch my dumbbells without supervision for at least a year after I was diagnosed. I was still working on walking and just moving my body in general. A couple months ago I started focusing on strength training with the FitBod app and it has been a game changer. It was painful at first and I have to be diligent about listening to my body, but I’m feeling so much stronger and able to be more active. What I love about Fitbod is that it’s incredibly customizable. When I started my workouts were only about 5 minutes. Now I’ve worked my way up to 15-20 minutes. The first time I tried to work out in a gym, I barely made it home before my legs gave out. Now, I prefer to work out at home just to be safe. You do what’s right for you, but you won’t get stronger if you don’t lift weights.
My last tip (for this post because it’s getting long) is find a Primary Care Physician and have an honest discussion about what you’re dealing with. I love my neurologist, but I needed a PCP to keep up with everything that was going on in my body. I did an entire blog post about this but basically, I became severely anemic after GBS and I was assuming that the fatigue was just a GBS residual that I should learn to live with. I made an appointment with a PCP and we went over absolutely everything. The only good thing about having such a rare disease is that doctors are always excited to talk to the zebra in the room since they usually only talk to horses. She wanted to do a full lab and a day after I had my blood drawn, she contacted me because my lab results showed that I was severely anemic. Since then I have been on this magical iron supplement that has changed my life. So, get yourself a PCP and make sure that you’re not just blaming everything on GBS.
I hope this information is useful to you in some way. If you have any questions or want to talk more about anything, please don’t hesitate to contact me.