I often find myself trying to describe what it feels like to live with Myasthenia Gravis (MG). This series of metaphors is my attempt to accurately capture what it’s like to be in my body.
3 more…2 more…1 more…Aahhhhh.
Years ago I joined a research program that studied the effects of exercise on type 1 diabetes. I was randomly assigned to the group that did both aerobic and resistance exercise. This meant I got a free gym membership and a personal trainer and that I committed to going to the gym three times a week to do an hour and a half of exercise each time. And I did it. I worked out diligently and consistently for 6 months.
If you know me in real life, that’s probably shocking. The next part of the story will not be. For the following 6 months I got to keep the free gym membership to use as I chose. I planned to keep the same routine.
I went three times.
Even though I am naturally averse to exercise I have had enough bouts of motivation to know how to do it and to know how it feels. What I remember most vividly from my time at the gym is the feeling of being most of the way through the last set of reps on a particularly difficult weight machine. You know that those last few reps are going to hurt. They’re going to burn. You know you could just quit now and skip the last two or three. But you don’t. You choose to push through the pain, to ignore the burn, and to finish the set honestly.
That’s often what it feels like to live with Myasthenia Gravis. Moving my body through my life is like a never ending workout and I often come up on that feeling of “no more, I can’t do it, I just need to stop.” And sometimes I can. I lay down and rest the aching muscles that are slowly shutting down. And sometimes I can’t and I have to push through and keep going. Simple daily movements can seem insurmountable. So I take my time, I grit my teeth, I breathe deep, and I push through it.
So If you see me slowly ascending stairs while crawling at a snail’s pace, or pausing before I use the kitchen counter to pull myself up off the floor, or breathing deep before adjusting myself as I’m propped up in bed, don’t worry. Just know that I’m nearing the end of a very vigorous workout. I’ve got this.