When I was first diagnosed with GBS, my body underwent what I’m going to call a near hard reset. The prognosis is that I will return, but by return, the experts really count to about eighty-five percent recovery as complete. It ravaged my nerves and essentially disconnected my brain from my legs starting at the feet and my arms starting at the hands. It burned its way up, destroying the myelin sheath that protects my nerves, and facilitates sending electronic signals or instructions up through your body. You think ‘pick up that pencil,’ without really forming the words and a pencil on the table is in your hand, or you go to the bathroom, and push up, and get to the toilet while thinking about someone else’s post on social media and can’t clearly remember taking each step. I was robbed of this. It was so bad that at one point I couldn’t close my own eyes at night, and I had a tracheotomy and had to use a ventilator for five months. I had a feeding tube directly into my stomach. I have my arms back, but not fingers really, they are coming, but I still can’t walk yet and need assistance to sit up or rollover.
All this damage does a number on your senses too. I can feel my hands, though they feel like rubber most of the time, and feeling below the knee is patchy. At one time I felt completely disconnected from my body. I couldn’t move my head much if any, my eyes and eyelids were misbehaving, and I felt disconnected. I imagine sometimes this is what it feels like to have an out of body experience, yet my consciousness remained centered on my head or chest for the most part.
My arms wouldn’t respond when I wanted to raise them, yet I would feel my hand rising into the air, my shoulder bending, my fingers spreading and flexing, but the illusion was broken when I looked up where the hand was supposed to be. I’d look, and the feeling would vanish, then I’d look away and try again. I’d raise both arms, separately, and together, then look back and feel them dissolve.
I did the same things with my legs, but they were easier to mess with while I was seated in my wheelchair. I like to sit with my right leg up, my heel resting on m left knee. I’m so used to sitting like this that even though both legs were definitely down, on the footplates, I could feel like I was sitting this way, feel like that leg was bent around and resting on the other one. Then, usually in someone’s presence, I’d ask, just to be sure, where my legs were because I felt as if I had three legs, an extra one sprouting off from my right knee. It was easier to have this feeling in the chair. In the bed, I could almost always see my legs, which helped my\e bust that feeling.
Back in the bed though, I’d extend my thoughts, and try to reach behind me, and through the bed. I did this for quite some time in my non-therapy hours. Your brain always fills in the gaps, so I could feel like my arms were stretching through the mattress, into springs and gears that made up the inner-workings of the hospital bed. Of course, I wasn’t. My arms were still just there, it felt like I could.
The strangest part were days I felt I had multiple arms and legs, sometimes sticking straight up in the air from where I was.
Here is a good video that I feel illustrates the phenomenon well.
I did lose my big toe permanently, and I can frequently feel it wiggling. Under the covers, I can feel it moving through the covers above it many times. There’s a sound in my mind when one of the limbs or my toe move through a piece of cloth or a shoe. To me, it sounds like cotton swabs rubbing together. I can’t explain that one at all.
Sometimes I could feel tendrils radiating out from me that were neither arms nor legs.