A Day in the Life of Recovery

The strange thing about my condition is how suddenly it changed everything about me and my daily experience. Four months ago, though I was sick, you wouldn’t have known it—unless you happened to notice me nodding off in class, day after day, after consistent eight or nine-hour nights of sleep—or if you noticed the ever-increasing amount of dents in my car from suddenly not being able to tell where the edges of my car were. But now, with one look at me trying to walk across a room, it’s extremely obvious that something is going in my brain that I have no control over. Welcome to my new world of PANDAS.

One of the hardest things about recovery is learning to be honest with yourself by being willing to admit how hard everything still is. It’s often difficult for me to explain to my friends and family just how challenging each day can be, so I decided that instead of explaining, I would tell you about what it takes to get through a typical day…

Every morning when I wake up, I have a few seconds of blissful forgetfulness before I remember that anything is wrong with me. But then there’s always that “Oh crap” moment when I suddenly realize all over again how sick I am. And I remember how many pills I have to take that day and the fact that things are bad enough that I need an IVIG in a week. For the rest of the day, I think of little besides my illness because it effects all that I do.

Everything is exhausting. I want to get out of bed, but first I must lie there for a few minutes to gather up my willpower. The first few minutes out of bed are nerve-wracking, because I’m anxious to see if my ability to control my body has improved at all. Will I fall down? Can I actually stand still while I brush my teeth? I have a few tics and arm jerks and decide that my symptoms are only slightly improved from the day before. Baby steps, I tell myself…

By the time I’ve gotten dressed and ready, I’m already worn out. But I have to go downstairs and find some kind of food I can force myself to eat so that I can take my antibiotic and steroid. My appetite is completely off, but if I don’t eat something, the meds will be too hard on my stomach, and I’ll lose even more weight (I’ve already lost a dangerous amount this summer).

As I stand at the counter preparing breakfast, it’s becoming more obvious to me that my brain is sill out-of-control. I keep involuntarily leaning forward and bending down, nearly smacking my head on the countertop multiple times. While walking across the room to grab a spoon, my knees buckle underneath me, and I fall to the floor. The frustration never seems to end…

I wish I could forget about it all. I wish it would go away, but it won’t—at least not for a few months. My recovery is going to take time, patience, and lots of courage. The trick is learning to be okay with that—and learning that the bravest thing of all is giving yourself permission to do whatever it takes to get better. No, this does not mean slowing down. To me, doing less means I’m fighting even harder.

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