As I sit here writing this, I’m struggling. It is difficult to even type, not because it’s hard emotionally, but because it seems so physically daunting. My arms and legs feel like they are made of concrete. I feel fatigued and exhausted. My body hurts, seemingly everywhere. It feels like I just climbed to the top of a mountain and then fell back down, hitting every rock I just scaled on the way down. I am not having an exacerbation, this is simply how I feel sometimes after battling MS for close to 18 years. The insult to injury at this moment, is that my mind, though slightly foggy, is very active. I have so much I want to do today, but the disconnect between the way my mind feels and the way my body feels is preventing that, and it’s driving me crazy.
As I said, this is a common situation for me, and I’m sure it’s also common for many who battle MS or similar diseases. I’ve spoken before about how my cognitive issues feel and how scary that can be. This is pretty scary and frustrating as well though. My mind has this get-up-and-go mentality to it right now, but physically, I can barely move my legs. My arms are propped on the desk and I’m typing with one hand. It’s not comfortable, but no position I get in will be comfortable right now. Everything is so heavy right now, my limbs especially. I feel like I somehow fell asleep on each of my arms and legs, I’ve got a tingling numbness in them that is similar to that. There is no shaking this off though.
I can never predict it
This kind of thing happens often, but I can never predict it. Sure, if I’m under a lot of stress, or if the weather fluctuated a bit, maybe I could have guessed it’d be a rough day. But many times, like today, there just isn’t any rhyme or reason. My body just doesn’t work the way I want it to. That’s most of us with MS, especially after having it for a long time. Those demyelinated sections in our nervous system simply won’t allow the signals to get through the right way all the time. That’s why there is such a rush to limit an exacerbation with something like steroids and why being on a disease modifying medication is so important. You want to limit those damaged areas because they eventually build up.
The best laid plans…
It’s not like I had grand aspirations for today. I wasn’t planning to climb an actual mountain or anything like that. I had simply hoped to catch up on some laundry, take my dog on a nice walk, and hopefully respond to some comments on my previous writings. I realize these things can seem minor and trivial to some, but that really would have been a big day for me. Depending on how the day was going, I was considering attempting something big, like taking a shower. That’ll have to wait now.
The fact that my mind isn’t nearly as foggy as it so often is when my body is feeling rough is extremely frustrating. I know, I should be happy to have my wits about me. Having my mind so active with my body like this really does make me feel like a prisoner in my own body though. It makes me worry about my future, and if it will be like some of the worst cases of MS I’ve seen. Cases like that of my grandfather and Annette Funicello, both of whom had MS steal many of their bodily functions but kept their thinking intact, leaving them imprisoned in their body, unable to move, unable to even communicate properly. That terrifies me because I’ve seen it up close. Being in that situation but still being fully aware is every bit what I think hell would be like.
So it’s not only the fact that I wanted to get some things done today. It’s not just a minor frustration. Days like this are extremely scary because they could very well be a glimpse into my future. A hellish future, at that. Our future is never set in stone though, and I remind myself of the medical advances we’ve had. I remember that we are lucky to have the medications that my grandfather and Annette did not have access to. I remember too that no one with MS follows the same path. Days like this make me appreciate the decent days even more, and they remind me to keep going.
Thanks for reading!