Whose body is this?

I don’t know this body anymore. I swear, they must have switched bodies while I was in the hospital. If they didn’t, the one I used to know is completely betraying me.

I think I have mentioned it before, but I am an athlete. I have always been. Even when I didn’t exercise for a while, I could go out and push myself through three miles. It was never a problem.

Apparently this MS body has other plans. Running just a half mile leaves me disoriented, confused, blind and with sharp pains in really odd places (like my ear!). I have also inexplicably gained weight thanks to the tons of medication I have to take.

Sort of a catch-22 happening here.

I have been attempting to learn this new body. I’ve been trying to get out and run as often as I can. Unfortunately, that 7-minute mile I used to run? It’s an 11-minute mile, and that’s up from about 13 minutes the first time I went out. Again, whose body is this?

I realize I am insanely lucky to even be able to run. The current book I am reading talks about these “mythological MS runners.” She doesn’t know where the people who run with MS are. On top of that, she mentioned the lucky MS patients who aren’t totally overwhelmed by symptoms in the “remission” stage of MS. Again, that would be me.

Even still, MS can do whatever it wants. The idea was easy for me to grasp as I sat in a hospital bed with a numb face and a numb spot on my back, but I think that explaining that to people is one of the hardest things to do. I look fine. I get dressed in the morning, I do my hair, I put on makeup and I go to work/school. But somedays, that is a struggle.

When we think of fatigue, typically we think of exhaustion. More recently, I learned exactly what MS fatigue feels like. For me, it is like running full-speed into a brick wall and then using so much energy trying to move the wall that I get nauseous. As if that wasn’t enough, it’s like that wall starts to actually fall on top of me while I am under water.

Running helps that feeling, at least a little for now. It helps, at least, when I can overcome the feeling long enough to get my shoes on and get out the door. But that isn’t always possible. And even when I do, I can only push so hard. If I run too far too fast, that’s when the crazy symptoms start.

I know when people push me and make suggestions, especially when it comes to fitness, they are honestly doing it out of the goodness of their hearts, but it doesn’t always work like that. Just because Jim up the street can run a marathon with MS doesn’t mean I can do that. Just because your cousin Sally does P90X daily after a job that has her on her feet all day doesn’t mean I can do that. But it also doesn’t mean that just because Jill lets her MS keep her on the couch all day that I am going to do that.

I listen to my body and I exercise where and when I can. This is such a vague disease that it creates vast differences in every single one of us.


Baseball and my MS

It’s no real secret that I am a huge baseball fan. I’m in school to be a sports writer, and for Christmas the better half bought me Padres season tickets (not that I expected full season, but that’s what we have).

It was a strange coincidence that my first MS attack manifested while I was at the last game I would attend last season. It wasn’t the last game because I got sick, but it was the last game because that was what I had planned. It was a Friday game and the final home game would be played that Sunday. I attended a lot of games last season.

However, I just realized an even stranger coincidence. At least, I think it is. October 9 was the day I went to the ER where I was finally given some reprieve from the unending questions of why I was blind. Exactly six months later I will be at the Padres home opener for the 2013 season.

I couldn’t think of a better way to celebrate six full months of fighting this thing.

When I started my Rebif treatment I experienced side effects that wore me down and effectively left me couch-bound on every shot night. I was useless. I felt horrible that the better half and I had just started dating and we were spending the majority of our nights sitting on my couch while I was unable to move my body (how I WISH that were an exaggeration).

Finally, my doctor realized these side effects were not worth what the medicine was supposed to be doing. Research shows that taking 22mcg is equally as effective as taking 44mcg. He lowered my dosage because he felt that I still needed to live my life. I mean, jeez, I am only 27; I want to make as much as I can out of my useful years.

Once I began taking 22mcg I became a more productive member of the world (not that I had quit working or going to school, but that was about all I could do). The side effects were still harsh, but less so than prior. So I gave myself a deadline. My body would be allowed to react however it wishes until the home opener. I set this rule back in February, before I realized the six month coincidence.

It’s not necessarily fate or kismet, but it’s a happy coincidence for me. It seems that baseball keeps appearing to be my saving grace from something that, at the very least, nearly continuously occupies my mind.