"I totally get it," I said. "You gotta do something to feel like you're making a difference. That doesn't mean you can't do that while on disability, but a job can be a big part of that."
I don't have the exact symptoms my co-worker, who also has MS, was describing, but I admired her resolve.
Even on days when I'd rather not get out of bed, part of me fears life sitting around watching daytime tv and eating cereal would get old. Especially since I can't have milk.
She went on to tell me about not being able to run, or even feel her legs for days at a time. I suddenly felt guilty that my numbness was limited to my left foot. We soon became like two old war veterans complaining about the weird things multiple sclerosis was doing to us. It was oddly fascinating to hear what she was going through, and not just because she had it worse than me.
Although that probably helped.
It started when I had to explain to my co-workers that I couldn't have birthday cake, or anything else with high sugar, because it would make my legs twitch, a rare feature I lucked out with. Then she asked what medication I was taking, and we shared the universal MS-bonding ritual of talking about how much we hate our respective medication prescriptions.
There are about 15 different MS drugs approved to treat MS, and from what I can tell everyone hates whichever one they happen to take. People with MS tend to seek out some secret less dreadful medication like the Spanish explorers sought out the Lost City of Gold, with about the same success (but minus all the homicides).
One of the newer ones is effective, but it takes half a day, and a trip to the hospital to administer. And it leads to brain tumors in a disturbing number of folks. A slightly older one causes stomach issues, and may cause cancer, and still others cause vital organs to shut down. Older ones have fewer side effects, but--forgive me for nitpicking--don't actually work.
I consider myself lucky in that my medication really hurts to administer but otherwise seems to work, and has not yet killed me. On balance, that's a win.
My coworker has had a rougher run. She had the disease for years and no one could figure out her issue. Even after a diagnosis, she hasn't found an effective treatment routine. One of the worst things about having multiple sclerosis is that no one else really knows what it is.
I don't blame them. I still don't know either.
When my doctor told me I might have it, one of the first things I did was look up the difference between MS, cerebral palsy, and cystic fibrosis, because I had them all conflated into one disease in my mind--one where the patient can't walk without assistance and looks really thin.
But now that I'm three years in, and mostly just look thin, people tend to assume that I'm not really affected.
"Do you have any symptoms?" people ask me sometimes. I get annoyed with that question, when it is phrased as though I can answer it in a sentence or two. You might as well ask me if there are any ways in which I feel different from a zebra.
I spent a couple hours yesterday wondering if I couldn't see clearly out of my left eye because I was having another MS attack that would leave me half blind for the foreseeable future again, or if I just needed to change my contact lens.
It turned out to be the latter this time, thankfully.
That kind of thing used to freak me out, but now I've gotten used to it. I don't know what my disease is going to look like from day to day.
One day I wake up, have breakfast and then need to go back to bed. The next I might run nine miles at 8-minute pace. The next day I might have stabbing nerve pain throughout the day and be unable to concentrate. The day after, I might feel totally fine, and feel so thankful that life still seems so normal. Then at night, when I can't sleep, I'll get aggravated about something and can't calm myself down. When I finally get some rest, maybe I'll crank out a brief that gets rave reviews and think that this whole yo-yo routine is all in my head.
And literally, I suppose it is. I have 16 scar ("sclerosis" in Latin) tissues in my brain to prove it.
On the bright side, life is never boring. On the downside, it's so hard to explain what MS feels like unless you have your own handy blog.
I posted an article to Facebook this week about what MS feels like, and I immediately worried that it would look like I was whining. I'm thankful for the life I get to have. Sometimes I just want some explain MS once, and not have you ask me why I'm not eating chocolate the next time I see you, why I can't eat outside on a hot day, walk a straight line down the hallway, or might be slow to return a message.
Or maybe why this wasn't my best blog post. In case you're wondering, I blame my medication.
