‘Twas two years ago on this date that I was diagnosed with Guillain-Barre Syndrome. If you know anything about GBS, that’s a horrifying diagnosis. But I didn’t really know anything about GBS and was relieved just to have a diagnosis. I had been in the hospital for a week at this point and continued to get worse as the medical staff continued to look baffled. I was ready to fight, I just needed to know what I was going to fight.
You can read my book for the detailed version of this maniacal monster that ravaged my body. It’s kind of like the “game” your older siblings play where they take your hand and slap you in the face and tell you to stop hitting yourself… except you become paralyzed and you can’t stop your body from attacking itself. Super fun.
I honestly don’t know if I’d want to know then what I know now about GBS. I think the (false) hope of returning to “normal” kept me motivated and in high spirits while I was paralyzed and trying to convince the doctors not to put me on a ventilator because my breathing scores were so low. At this point, I don’t even remember what normal used to feel like.
So two years out and I still have pins & needles in my hands and feet all the time, but it’s not as bad as it used to be. My balance isn’t great, but it’s not as bad as it used to be. My face is still a bit messed up, but it’s not as bad as it used to be. Are you picking up on a pattern? Basically, I’m not as bad as I used to be. Insert shrugging girl emoji.
Do I still get frustrated? ALL.THE.TIME. Am I thankful that I’ve gotten a lot better? ALL.THE.TIME. I also work my ass off to get better. I have learned that just because you can’t feel your hands and/or feet/legs, doesn’t mean that they won’t work. There’s a lot of trial and error. My body is still somewhat of a mystery and trying to figure out what’s not working, why isn’t it working and how can we get it working again, is a daily adventure.
Right now my focus is on trying to get rid of the weight I gained because GBS went wreck it Ralph on my digestive system, bowels, metabolism, etc. I also continue to do my facial exercises in hopes of one day being able to smile real big without my left eye closing. Am I back to pre-GBS normal? Absolutely not. But I’m not as bad as I used to be!