Like Cinderella: When MS Only Grants Me Limited Time At The Ball

It’s always a pleasure to be able to say that I’ve been on a pretty good run recently, at least as far as MS is concerned. Now, a “good run” doesn’t mean I’m symptom free. This morning, I still awoke with burning pain in my legs and a body that ached like I’d just fallen down a rocky mountain. I still suffer bad fatigue, and I’m not the most steady on my feet (in fact, I fell just a couple days ago). So having a good run really just means I’ve been adapting well. I’ve made great use of my routine, and I’ve cut out (or at least limited my exposure to) some toxic people. You can feel good about life and still have a lot of symptoms. I suppose I’ve just been able to grin and bear it and flash a somewhat truthful smile lately. During this stretch of time, I’ve really noticed something. Even with things going well, I feel like Cinderella at the ball: I have a pretty limited amount of time that I can do my best “acting like everyone else” impression.

I’m still fairly limited

It may sound like a sad truth, that even when things are going well and I’m pretty stable, that I’m still fairly limited in the amount of time that I can get things done. It’s not sad at all though; I’ve been at this MS thing for a long time, and at this point, I’m thankful for every chance I get. Every chance to pretend that I don’t have this disease, to feel a little more normal, despite whatever symptoms are bothering me that day. That is certainly part of my problem and a reason I feel like my time is so limited. I want more, I want more time where I just feel good enough to pretend to be normal. That sounds way sadder than I intended, but it’s true. Still, that isn’t even the reason I started thinking about this limited time that I have.

Others have somehow forgotten that I’m a little different

What really made me notice this, throughout this nice period of time, is that others have once again started to feel slighted when I couldn’t partake in whatever activity they’re heading up. Things have been so smooth, basically meaning that I’ve been faking it so well, that others have somehow forgotten that I’m a little different (special?). Overall, that’s probably a good sign for me, but still, it sucks to have to re-explain my symptoms, particularly the dreaded “MS Tax”. It sucks to remind people that, I am putting on my best smile, but that doesn’t mean I’m not hurting. That doesn’t mean I have as much time as you. The worst part of that is that it reminds me that I’m different, and that I do have limited time when it comes to doing activities that others probably take for granted.

Little things I have to do

I guess I feel like Cinderella sometimes (as much as a 40 year old bearded guy can, anyway), knowing that my time at the ball is limited. That the clock will at some point strike midnight, and there is nothing I can do to stop it. In many ways, that smile I put on despite my pain, that leaning against something so I don’t fall, the hidden ice packs in my pockets to help keep me cool, those are all little things I do to be able to operate like everyone else. Those are like my gown, slippers, and pumpkin coach that a fairy godmother gave me to help me fit in at the ball of life. My friends and family forgetting, not remembering I have this illness, that’s a lot like the Prince being confused at Cinderella leaving the ball early. (Still waiting for my prince, er, princess in my case, to someday show up with an ice pack or cane or something I left behind).

Enjoy your time at the ball

So while I have limited time when I can act like most other people, I’m extremely thankful for every minute of that. Cinderella had a hard life, but made the most out of her limited amount of time at the ball, just as I try to do. So while it sucks that “midnight” often comes way too soon, it’s important to enjoy your time at the ball, no matter how limited it is. When you have your chance to temporarily turn your rags into a gown, go for it, even if the moment ends early, it still might have a pretty big impact on your life.

Thanks for reading!

Devin

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