how multiple sclerosis teaches me to be grateful

Multiple Sclerosis has taught me to be grateful every day. No matter how challenging the situation, there is always something to be appreciated.
I’m not saying I’m grateful to have MS. Not a bit. I am grateful, though, for every lesson I learn living with it.
There have been many.
For example, I can always count on Multiple Sclerosis to make sure I keep it real.
Like, super real.
Like yesterday morning.
As always, my alarm went off at 4 am. I dutifully got up, got dressed, brushed my teeth, took my medication with a bottle of water and went for my morning walk. Forty-five minutes later I returned home and meditated for 25 minutes before finishing my daily Duolingo Spanish lesson. Properly exercised, self-examined and slightly more educated, I took a shower and got ready for work while I listened to a Ted Talk on YouTube.
Preeeeetty typical stuff.
Until I caught on fire.
At least that’s what it felt like.
My stomach cinched up, and it felt like someone was holding the burning end of a match closer and closer to it. At the same time it felt like my insides were being microwaved on high, a tidal wave of nausea hit me so hard it took my breath (and knees) away, and I crumpled to the floor like a dish towel sliding off the counter.
It was 20 minutes before I could get up, and when I did finally manage to get to my feet, I had to hold the wall all the way back to the bedroom to lie down for another half hour.
par for the course
This isn’t new. It’s happened before and it’ll happen again. I just never know when or for how long because these are side effects of Tecfidera, my new MS medication.
Along with breaking out in hives every time I take it, I can experience a host of other reactions. But after being on the once-a-week intramuscular injection, Avonex, since my diagnosis in 2009, I gladly switched to Tecfidera, a twice-a-day pill, a few months ago. My arms and legs were pretty tapped out after so many years of injections, and I was beyond happy to be given the choice of not one, but three different oral medications: Tecfidera, Aubagio or Gilenya.
Every MS drug has side effects. Bad ones. They’re also expensive. Very expensive. The side-effects and sky’s the limit cost combo are enough to make a lot of people stop taking them.
I’ve been guilty of it, too. But when my logical self reminds me that DMDs (disease modifying drugs) are my only weapon against more rapid progression than without, my saner self takes over and I go back to protocol.
Because side effects are nothing compared to relapses. And relapses are nothing compared to progression. I don’t want either. And, because there’s no guarantee that anything will prevent them, I have to at least try.
testing testing 1–2–3
Most of the time I think of myself as a total badass. A handful of sparklers on the Fourth of July — a beam of happy, helpful energy going in every direction all at once. But when the tests come — and they always do — I’m grateful I’ve learned how to tread mad water to keep my spark going.
Because a life with Multiple Sclerosis (or any incurable disease, for that matter) is a constant education. Tests every day.
MS springs pop quizzes on me all the time. I can’t prepare for any of them, so I fail them just 100%.
Like my vision going haywire (fail) or losing feeling in my face (fail) or brain fog so bad I can’t actually speak because I can’t form words (fail). It tests my ability to sleep, to tolerate heat, to balance, to walk, to concentrate, heck, even to swallow sometimes. Whole lotta quiz failing goin’ on.
But then there are the surprise exams the meds spring on you, like yesterday’s test — that I’ve learned how to pass with gratitude.
MS may be forever, but side-effects from medication are temporary. I’m grateful for that.
Originally published at www.gretchenskalka.com on August 24, 2017.
