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Trapped in Your Body

Last updated: June 2022

Living with multiple sclerosis, some days I wake up and things are pretty good. I follow my morning routine, get some things done around the house, and things are OK. I may struggle here and there but on an average day, things aren’t so bad. I do have days that are the opposite of that though. When seemingly for no rhyme or reason, I won’t feel well and the smallest of tasks are incredibly difficult. One of the worst types of those days is the kind where I feel like I am trapped in my body. Allow me to explain.

Bright brain days

Despite often struggling with cognitive problems, I do have days where my brain feels especially put together and functioning. These days, I feel a bit like the old me - intelligent, with it, and able to remember things. The brain of the old me before a few decades with MS, back when I was educated, clever, and bright. It’s like a glimpse of the past. I can read faster, I can plan out my day, and I don’t get lost in time like I so often feel I do. When this happens I have a type of mental energy where my brain is ready to go a million miles a minute. It’s ready to tackle any number of problems, it’s ready to read, to do stuff, it’s ready to finally be productive again.

Dark body days

The problem is that many times when my brain finally feels like it’s firing on all cylinders again, the rest of my body does not. Fatigue sets in and every movement I try to make feels like I am trying to get through quicksand (the kind that all the TV shows of childhood seemed to indicate would be a big problem when I got older). Nothing is easy. Every task zaps five times the energy that it normally would. Standing is difficult, walking near impossible, and even opening my eyes is incredibly tiring. I am so tired and so weighed down that the smallest of tasks is exponentially more difficult than it was the previous day. Adding to the heavy feeling, I often experience bad numbness in my limbs on these days as well.

Trapped in a bad MS day

When these bright brain days meet dark body days I feel incredibly trapped. When this happens I almost wish I'd have brain fog set in so I don’t feel the frustration of finally having my brain be useful but have my body not be. The sluggishness of my body being unable to meet the excitement of my brain is an absolute nightmare. While those of us with MS will often have one area work while another fails, this particular combination is maddening. Being so lucid and understanding of how your body is failing you is damn near traumatic.

You sit or lay there, unable to move, with your mind sprinting around inside your head. Your thoughts are trapped, imprisoned in a body that has failed you. It’s awful. I’m so tired but so awake on these days. My body is ready for slumber and my brain is ready to stay up. This makes the time during these days pass incredibly slowly.

You move on

Eventually, things go back to normal. Cognitively, I’m no longer firing on all cylinders, but my body is also less fatigued and slightly less numb. I’m less aware of what I am missing out on and I don’t know what happens with large segments of my time, which makes the day go by quicker. As I describe that, I’m not sure that’s really better, but I know that it feels better than feeling trapped inside my own body.

Thanks so much for reading and feel free to share! As always, I would love to hear about your experiences in the comments below!

Devin

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