A Rant from a Rough MS Moment
Not everything I write about can be well thought out (if any of it is). There are days, like this one, where I simply need to attempt to get something out. To be raw and unfiltered, in order to fully explain what something is like for me, to record how this disease can affect me. This is one of those times.
Having problems moving
It’s an ordinary day (a Tuesday, I think), and I had grand plans. Grand for me, anyway. My goals were to finish an article about MS and using a weighted blanket; I then wanted to clean my bathroom, and take my dog on a short walk. If I got all that done, I wanted to clean up the living room. Tasks that would be minor for most people, certainly to the Devin of just a few years ago. I’m having trouble though. I am having problems moving. Lifting my arms, standing, walking, even literally holding my head. I am barely able to type this (and I know if I finish, I’ll be wiped for the day, and it’s not even noon yet). Do you know what it is like to have so many things you want to do, even minor ones, and you can’t because it’s hard to move parts of your body? It’s awful.
Nothing is visibly wrong
I hate to write something that sounds so dismal, I really do, but at the same time, if I were able to read or hear that someone understands what I’m talking about, damn, I think that’d somehow make things feel a tiny bit more bearable. With most of my problem, if you were to peek in on me, you’d see that I’m slumped over with my laptop, but you’d likely not notice anything wrong with me, not visibly anyway. I “look fine” is what you’d probably say.
Disability was the sentence, and my body is the prison
In a sense, a lot of my body is fine. My arms and legs and other part work just fine; the problem is that my brain's connection to them doesn’t. I am trapped in my body as I try to make it move and it won’t, or at least it won’t as much as I’d like. My body is a prison, and I can’t open the gates no matter how hard I try. It seems futile to even attempt to explain the level of frustration I have. I’m not even trying to do the same things that normal people do. I’ve long since been kicked from my career and relegated to this life. Disability was the sentence, and my body is the prison. On days like this, I feel like I’m not only in prison, but I feel like I’m in solitary confinement, too.
Robbed of control
Another thing about this is that this isn’t even what I would consider a rough day. I had one of those two days ago, when not only was I heavily fatigued and feeling like I was moving through mud, but my body was wracked with spasms and pain. That was a day when part of my body, because of the spasms, would move without me wanting them to. Now today, I’m having times when I can’t make my body move at all. Doesn’t that seem so, so messed up? I feel like I have zero control. That’s what years with this disease has done to me. It’s robbed me of control. Of my limbs, of my days, of my life.
Days like this
I don’t know if I’ll share this rant and my frustration or not. I don’t want people thinking I am looking for sympathy, because I’m not. I do want folks to know, though, that sometimes people like me just can’t move, just can’t do what we want, even when it’s something simple, that others would casually dismiss. I want people to know that it sucks and that not everyone with MS is out running 5Ks. At the same time, not everyone is in a wheelchair either, not everyone even uses a cane all the time, but they still have days like this where they can’t move and can’t do what they want.
Thanks so much for reading and always feel free to share!
For trips, which means of travel do you prefer and why?