Dismayed woman whose body is manipulated by puppet strings controlled by her brain

When Your Body Fails You

The very nature of Multiple Sclerosis involves your body failing you. Specifically, the signals your brain is sending throughout your body is what is failing, but the end result is that your body no longer does what you want. Try to lift your leg, the signal doesn’t quite get there, and you fall. Go to talk, and your speech is slurred because the message your brain is sending to the muscles that help you speak is all garbled or delayed. The temperature warms up and the conductivity of our damaged nerves causes all sorts of things to go wrong with our bodies.

Betrayed by my own body

The list of ways your body can betray you seems never-ending. Telling your body to do something and having it not do what you want is a major source of frustration and even fear for those with MS. At this point, living with MS for almost longer than I’ve lived without it, you’d think I’d be used to that frustration, but that’s far from the truth.

My body has been failing me from the start

My body failing to do what I want is something that’s plagued me from the very beginning of my time living with MS. I woke up one morning, went to take a step and fell flat on my face: one of my legs did what I told it to, the other did not. That was the start of me noticing that something was no longer right with me. At the time, I was young and fit, an athletic college hockey player who had never really experienced my body not doing what I wanted. To suddenly not be able to put one foot in front of the other reliably was quite a shock. It was something that I simply refused to believe.

Falling flat on my face

I reluctantly saw a doctor, but I was adamant about not following the doctor’s recommendation of going into the hospital for testing. I was in complete denial that something was really wrong with me, that is, until I tried to walk out of the doctor’s office and both of my legs wouldn’t listen to me. I got up to leave and fell flat on my face, unable to use my legs. The frustration and terror of experiencing that, especially at that age, while being that healthy (or so I thought) and fit, is something I don’t wish on anyone.

Everyday tasks bring the most frustration

Fast forward some twenty years later and I’m still having problems with my body listening to me. Sure, I’m a bit more experienced at it. My life is thoroughly different than I expected because of it. I no longer work because my body consistently fails to do as I wish. That doesn’t mean that it isn’t still frustrating or even terrifying at times. I still occasionally fall, I drop things, I even struggle just to get comfortable. What should be the simplest of tasks, like showering or getting a glass of water, can suddenly become incredibly difficult. It’s these mundane, or rather what are mundane for most people, tasks that bring so much frustration. When you can't even regularly get yourself a drink of water without risking dropping it or take a shower without worrying about how it might affect the rest of your day, you can become pretty annoyed with life.

Fear of progression and the future

Echoing back to those earlier experiences, I still have trouble with falls. Falling has been such a common feature of my life with MS. Even though I’ve gotten up countless times, there is always that brief moment of terror when the thought crosses my mind that maybe I won’t be able to get up this time. Maybe my disease has finally advanced enough that I won’t be able to walk or stand at all. That thought process is something that can creep in often when our body doesn’t do what we want. It’s easy to wonder and dread that when a body part doesn’t respond, that it won’t ever respond. MS is a disease that can progress. Damage is done to all of that myelin and it can’t be repaired (not yet anyway), so there is always that fear in the back of our head that this failure could be the last. The last time to walk, to pick up a glass of water, to do whatever we were trying to do.

Living with frustration and fear

Frustration and fear are just par for the course when it comes to living with Multiple Sclerosis. While you adapt and get a bit more accustomed to those feelings, sometimes they still rise up and get the best of you. It’s natural and nothing to be ashamed of. People with MS deal with more frustration and fear than average “healthy” people. That’s just one reason they’re often considered warriors. It’s also another reason that mental health is such a huge issue for us. Pushing through, adapting to our challenges, surviving, the more you do those things, the more you overcome, the more invincible you feel. Still, you never get completely away from those feelings of frustration and fear when your body just doesn’t do what it’s supposed to.

Thanks so much for reading and always feel free to share!

Devin

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