So it’s been 12 weeks since I came home. I figured I should update, to, at the very least, explain why I haven’t been updating.
Prior to the treatment, I had a number of symptoms. Or at least I thought they were different symptoms. I had a great deal of muscle stiffness. Mostly this manifested as “muscle tone,” which is what they call it when the whole muscle flexes, and won’t let go. For example, my quad will often do this, especially if I haven’t moved in a while. The knee will straighten, and I have to wait a few seconds to get control of the muscle again. I also had problems standing for any length of time and in the bathroom getting my muscles to relax.
When I got home, my muscles were very weak. I couldn’t stand, and I had minimal bathroom control. But as I was sleeping 15 hours a day, and eating the rest of the time, things seemed to improved quickly.
But it seemed at the time, that many of my symptoms had gone, and with time the strength would come back. I was looking forward to the best of both worlds. I was able to sleep without my legs getting cramped up. And when I was trying to move around, I wouldn’t get the muscle tone like I did before.
Then as the muscles strengthened, I noticed some of the old symptoms coming back.
Now the stiffness has returned in full force. But, I am sitting in a wheelchair most of the day, so I don’t know how much is a carryover from the MS, and how much comes from just not moving much. It also makes me think, much of my problems before came from not moving much.
So here I am. with a lot of the disability that I thought had gone away, slowly creeping back in.
There is still hope. There is anecdotal cases where symptoms got worse right after treatment, and then got better later on. So there is a chance that is what’s happening to me. But there is also (probably a better) chance that I just got to experience what it would be like without all the muscle stiffness. So the reason I haven’t been updating, is because I’ve been holding my breath, trying to see what was going to happen. What I thought I knew, turned out to only be the way it was in that moment. I feel like much of the next year will be spent hoping. But the problem is, in that time, at no point will I feel confident that what I am experiencing will last. Everything during this recovery period is so individualized. There’s no map. I’m just trying not to go too far in that direction, I’m told thar be dragons.