Out of Sync: "I Don't Feel Right"
As I lay on the couch, I look over to my faithful companion and tell him “I don’t feel good.” (Yes, I talk to my dog!) He gazes back as if to inquire, “What’s wrong?” so I mutter “I can’t explain it.” Over my life with multiple sclerosis, I’ve had a similar exchange with humans as well. Knowing that I don’t feel “right” but being unable to explain it any further. There are plenty of times when I am able to articulate how I feel: I’m fatigued, my legs are on fire with burning pain, I’ve got bad spasms, or even saying that I feel confused. There are times though when I really can’t explain why I don’t feel good. Well, after a couple of decades with this disease, I think I can sort of explain those moments: I don’t feel in sync.
Feeling off: An odd sensation
I still grapple with how to properly explain this feeling, but it’s like my insides aren’t working together. Like none of the parts inside my body are cooperating with each other and they are all out of sync. The end result makes me feel weird inside, the kind of weird that is upsetting and puts me on alert. The kind of sensation that is hard to explain other than saying “I don’t feel right.” I don’t know what exactly is going on inside me, but I know enough to know that, on a low level, things don’t feel like they are working the way they should. I may have no tangible symptoms I can point to when this happens (though sometimes I do), but I know something is wrong.
The brain's messages to the body don't make it
Well, I don’t really know what’s going on inside me, but I’m certainly familiar with parts of my body being out of sync. That’s ultimately one of the largest issues with MS, our body not working well together. Myelin gets damaged, our brain sends a message to do something and because of that damage, the message doesn’t make it, travels slower, or even gets garbled. My brain sends all the messages to my legs to make me walk, one leg reads them loud and clear and performs the way it was told, the other has difficulty and so doesn't move the way it should. The movement of my legs isn’t in sync and the next thing you know, I’m on the floor.
Describing it helps me feel better
Is this sensation I feel throughout my body really an indication of low-level parts of it being out of sync? Eh, I don’t really know, but it feels that way. More importantly, describing this feeling as my body feeling out of sync has helped me to explain it to not only others, but to myself. The fact that so many things being out of sync when you have MS is a bonus. It’s a nice plausible explanation, but at the end of the day, I still can’t do anything about it. Ultimately, I have MS, that’s the only real cause I need to understand. Still, it’s nice to be able to explain it. Nice to be able to say more than “I don’t feel well.” It’s not only a matter of explaining it to others though. Having somewhat of an idea of what I’m experiencing is somehow comforting. Since I've come up with this way of describing it, I’ve felt much less panicked and a little less frustrated by it.
Does this make sense to anyone? Like inside your body feels out of sync? If so, please hit up the comments below!
Were you misdiagnosed with something else before receiving a MS diagnosis?