Life with MS: Sometimes Sh*t Just Doesn't Work

The other day, as I was sitting on my porch with my dog, enjoying some cool, crisp, MS-friendly weather, my roommate pulled into our driveway. My pup, a dachshund with short legs, has, from the day I rescued him, preferred being up high, so he can see what I see. So, when I arose to greet my roommate, he desperately wanted me to scoop him up so that he could be part of the conversation. However, I couldn’t lift him up, as I normally do, and he tilted his head and looked at me inquisitively. Even though I knew he wouldn’t understand, I tried to explain to him that my arms weren’t working at that moment, so I couldn’t help him achieve his preferred height. I really wanted to convey to him that when you have MS, sometimes sh*t just doesn’t work.

But things are good

I think if my dog could have responded to me, he’d have mentioned that the weather was great and it was a week after my Tysabri infusion, normally that would mean I’d be thriving. All of that is true, but further illustrates that when it comes to having MS, sometimes that doesn’t matter. There can still be symptoms, no matter how prime the conditions seem to be. In this case, my arms were numb, weak, and felt extremely heavy. The rest of me was doing fine, but the area of damaged myelin between my brain and my arms wasn’t facilitating communication between the two because of the damage done by MS. Often times this happens because of triggers I can identify, like temperature or stress. But there are plenty of times like this when there is no clear cut reason that I can identify for this symptom to be rearing its ugly head.

The damage is done

That’s the thing about MS, it’s easy to think that we’re having problems because something is triggering them or maybe because we are in an exacerbation. The truth of the matter though, is that once our immune system has damaged the myelin around our nerves, once we have those lesions, nothing fixes them (although research is constantly exploring ways to do this). Once that damage is done, if we are able to use an affected area again, we are lucky, but there is always the chance that the damage will rear its ugly head, regardless of a recognizable trigger. That’s why it’s so important to try to fight an exacerbation (relapse or flare, as some call it) by taking the steroids (as awful as they are). Right now, until scientists can learn to repair myelin, fighting MS is about limiting exacerbations and then when we get them, trying to limit the length of them and the damage they do, because when that damage is done, that’s it.

It’s crushing

So, while it’s frustrating to our friends, family, ourselves, and our pets, things can seem to suddenly go wrong without reason. When part of your body isn’t working right, it’s so much easier to say, “Oh, well, it’s because I’m overheated”. It’s so much easier to point to something and say “this is why”. When a symptom pops up suddenly, and our bodies stop working correctly, and you know you are doing everything right, it can feel crushing. Like yesterday, when I should have been at my best and all the conditions were as perfect as they’ll ever get, I could barely move my arms. It’s easy to get down on ourselves when this happens. These moments when the disease is at its most unpredictable are the times when the disease seems especially unfair.

We carry on

As devastating as these incidents are, we keep living. I try to do my best to be accepting. To understand that my body won’t always work right, no matter what I do. I fight through it by adapting to it and remember that if it weren’t MS, maybe it’d be something else causing me problems. Everyone has problems of some sort, whether we know about them or not. MS is mine. Not everyone will understand why we are suddenly having symptoms pop up (“But you were just fine?” is something I have heard from friends and family way too many times in my life). Sometimes we have to remind them and ourselves, that with this disease, sometimes shit will just stop working. Instead of wondering why, I prefer to think about how I’ll adapt, and overcome the issue of the moment.

One more thing, when I looked at my dog, Ferdinand, and told him my arms weren’t working, I swear he gave me a look back that said: “OK dad, I get it, sometimes sh*t just doesn’t work, right?”. You got it, son.

Thanks for reading!

Devin

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