GBS thoughts

I’ve had a long struggle with GBS over the last couple of years, and it still amazes me just how debilitating it can be to be dealing with something that can take your body out in just this manner.


I remember while in the hospital, at my worst, feeling disconnected from my entire body. Nerves suffering deep demyelination were incapable of getting signals in and out of my arms and legs. The brain felt like my limbs were still there. When I was awake I could usually see them, but efforts to move them were not successful. I remember asking nurses to show me my legs under the covers, just to prove to my mind they were still there.

Since the sensation still existed of having them, yet signals from the brain didn’t create movement (still nothing below mid calf) yet in my mind I was still attempting to move them. I felt like i could move them through things. Out happens less so now, but I remember the feeling of lifting my legs up through the covers, and of putting my arms behind my back to “reach” through the hospital bed where in my mind I kept trying to messed with the mechanism that raised my head into the air. The feet moving through the covers always felt like I was pushing them up through thick cotton.

On several occasions, unable to communicate with my arms or legs at all, I felt like I could feel more than one. For instance, before I got sick I used to sit with my right legs frequently crossed over my left knee. On numerous occasions I found myself sitting cross legged when I could not move my legs. Still can’t sit this way. I’d look down and see, while feeling the leg up over my left knee, to see them both down where still couldn’t move them from. The I felt it. I felt like I had three legs. I could feel them each distinctly, and on several occasions I attempted to lengthen the time the illusion persisted. It made me question my body. Was I actually here? Or is this body only a projection of spirit? I don’t think there’s a way to tell.

I did similar work with my arms, raising them up, and seeing how many times could feel as though I was raising my arm up from the bed without putting it down. I’d go one, two, there? Each time trying to lift it to a different height. Trouble was after three or four separate phantom arms were up, I would lose count and they would quickly collapse back into each other.

GBS can really work over your nervous system and your immune system, until neither know what’s up.

It felt like I was invisible. Here’s to recovery.

Rare but when it happens…

Photo by camilo jimenez on Unsplash

Comments are closed.

Join my mailing list