Tuesday, June 28, 2016

What you can't see may surprise you

It’s been a crazy few weeks while I figure out this rather nebulous “thing” that’s inserted itself into my life. I keep thinking that I might have imagined the symptoms and if I ignore my MS it won’t be real. I'm not used to having physical limitations. Ask my mother, I’m the queen of burning my candle at both ends and have done it since I was nine or ten years old. I just truck right on through and then wonder why my body suddenly tells me I've had enough. So when my symptoms manifested rather largely on a Tuesday, they didn’t get in the way of working the crazy hours I’ve been working. And I did not give myself time to recover at all so that on that Friday of that week I crashed and burned.

Let's just say that I didn’t have a true grasp of the concept of fatigue being a physical symptom until I had to call my husband so that he could give me a ride home from work. Mental exhaustion I'm familiar with, as I am with sleep deprivation and how depression makes you feel like sleeping. This was my body feeling like I was loaded down with sandbags, with my brain still fully alive. I took a nap but then had insomnia that night. The truth is that my immune system is attacking my central nervous system. That by itself is hard on my body and stress (physical and mental), heat, fatigue, or illness make it worse. Even after all of that, I feel stupid for being freaked out by it.

It’s very interesting having an “invisible disease.” The things that have changed continue to surprise me and aren’t things that are immediately obvious to others. I spend a lot of time reassuring those who love me that I'll be fine. And of course, I will. But that doesn't mean my life isn't challenging in a way it wasn't before. When I’m feeling good, I can’t just do “all of the things” to try to compensate for those times I’m not good. It's difficult to enforce my limits with others when I don't seem sick.

I'm sure people wonder how I can run 2-3 miles 3 times per week most of the time but also need certain accommodations for physical limitations at the same time? It seems asinine in my own mind that I would consider getting a handicap parking permit while continuing to be a runner, and maintaining a career where I stand 99% of the time. When I asked my neurologist about it I expected him to at least roll his eyes.

But he didn't, of course. He listened to my internal conflict over what is "knowing my limits" compared to "giving up." It was particularly awesome that he shared his own personal experience with pushing his own body past its physical limitations. (I can't say I'm overly surprised that he's a triathlete.) I had to be reminded that the human body is only capable of so much, and on top of what is normal, I have MS. If I want to maintain my quality of life, I have to make smart choices.

So what does that mean? I know if I want to do something that involves slightly less than ideal conditions, I have to to make adjustments in order to make that possible. I budget my energy and choose my battles. If I want to go running on a regular basis, I should try to do that before it hits 70 degrees outside. If I want to do a race as temperatures rise to the 90s, I slow down and understand the possible pitfalls. I'll be honest. It still doesn't seem like this is my life I'm talking about. After all, I'm the one on the left in the photo below. I'd just done a 5K with my 13-year-old daughter at my side. It was fun and I finished strong. And doing it felt important in a way it never had before.

My Daughter, Sydney and Me.