I’ve been feeling some of my symptoms flare up over the past couple of weeks, so here I am writing about it. It gives me practice in describing the things happening and also to give folks a little bit of insight into what living with MS looks like.
One of the things that happens is what I’ve come to call as a sensation-not sensation. It’s like receptor adaptation isn’t happening so the receptors keep sending messages to my brain. The feel of clothing and sheets doesn’t go away after awhile, I just feel them touching my skin all the time but the finer detail of sensation is missing. So there are regions of my skin where I just feel sensations but the finer points of that sensation are lacking, if Shannon has a hand on my belly, I can feel the pressure and warmth of her hand but I can’t quite distinguish the shape of it. It’s hard to say what exact part of sensation is missing but I know that something is.
Now this doesn’t mean things feels a bit weird and I just move on with my day. This means I am feeling/not feeling sensations in these areas every moment and practically everything that touches my skin feels weird. Shoes feel weird. Clothes don’t feel quite right. I am startled by sheets moving across my legs in the middle of the night. Socks feel weird but it’s getting colder so I’ve just been trying out all my different pairs to see which ones feel less weird. Some socks and fabrics are too uncomfortable to wear at all.
The shoes feeling weird on my feet makes it a bit harder to solidly feel the ground beneath me and that’s been one of the more unsettling symptoms. This unsteady on my feet symptom was definitely worse when I got out of the hospital but I am still learning how to maneuver and operate my body with less information coming from my feet. Balance is definitely a big theme and lesson for me right now. I’m not supposed to drive when my feet feel like this and I am very lucky that doesn’t have a major impact on my life right now.
So the whole sensation-not sensation thing is happening and my body is just tired. My legs get tired just from standing for a few minutes. I need to sit down more. It feels like some of my muscle groups get tight but they don’t fully lock up. I’m trying to keep up with daily stretching and I’m pretty good about that most days. Getting myself to walk every day is a bit harder but Shannon has been kind enough to give me an escort when I do get myself moving. That theme of balance pops up again as I try to find the right balance of rest and activity in my days.