After physio ended, things got a little easier. My bed was moved back upstairs, I was walking mostly without the walker, but if I left the house I needed it.
Now the next part I’m adding only because it took place during the ‘GBS period.’ I’m not looking for pity or to make you sad. While I was in the hospital, my dad told me that my great grandmother was ill, and was in the hospital. He didn’t want to make me upset, so he didn’t tell me how serious it was until I was in the rehab unit doing better. Turns out she had cancer and was getting palliative care. After my physio at home ended, we went to the doctor so I could get the O.K. to fly to Nova Scotia to see her one last time. They hadn’t told her what had happened to me, they just mentioned I was sick, for the same reason they only told me. They didn’t want to upset her. So when I walked into her hospital room with a walker, you could see the pain on her face. She couldn’t really talk much and was very weak, so she didn’t say anything it was just written on her face. Two months later, she passed away.
A few months after being discharged from the hospital, I went to do a follow up with the neurologist who had worked with me when I was in the first hospital. At this point, I was walking without the walker, my face had returned to what it looks like now, and I was doing a lot better. He asked me some questions, and told me I would be fine, the chance of reoccurrence was very slim and that I could continue to live regularly.
Despite this, there are some things I will not do, simply because it could trigger another incident and quite frankly, I’m not willing to risk that. I will never get anymore tattoos, I will never get a flu shot, and for 2 years, I would not so much as touch a jellybean. I’m doing good now, health-wise. I ran my first post-GBS 10K a year almost to the day of my admittance to the hospital. I continue to run now, and only experience minor side effects in my legs (sometimes I lose feeling in one or two of my toes, if my feet get too hot they go numb and tingly), my immune system is weakened, I am the first to catch a cold if someone has it. If my whole body gets too hot, I get dizzy and black out like the hospital incident. As for my face, if I drink or am tired, my eye weakens and closes a bit, I sporadically have nerve twitches in my face, I have to work really hard to make my smile even for pictures, and I have a dimple in my chin I never had before (don’t know how GBS managed that).
Thank you for taking the time to read my GBS experience, I hope you enjoyed it. I want to thank everyone who was there for me during this time, who brought me books, melted blizzards, did crosswords with me, and just came to visit in general. I sincerely appreciate it.
If you have any questions please let me know, I will be more than happy to answer them. I would also like to mention that I may have missed some parts of the story, I’m sure I’ve repressed some parts, and the drugs probably made me forget things as well.
Thank you again! Here’s a picture of my face post GBS (I chose one that you can actually notice the difference on so you can see the residual effects).
But again, let me emphasize you can’t usually notice it, I’m just so self conscious about it that I will notice it in every single picture. Here’s another post GBS picture where you can’t really see it.