When My Illness Demands That I 'Micromanage' My Body

In the six weeks since I’ve sprained my ankle, I’ve become aware of what every muscle and joint in my foot is used during particular movements. Mainly due to the pain I feel in particular areas of my foot when I’m walking at varying speeds, moving up and down stairs, driving, etc. Obviously I have to consciously avoid movements that cause pain so as not to slow down my recovery. But what I realized in this process is that I already have to do everything with conscious effort to avoid injury or illness. Having a chronic illness demands micromanagement of my body.

Lately my medications haven’t been working at maximum efficiency, so as a result, a lot of symptoms have been worsening. My tendons and muscles are not working properly, leaving my joints unsupported, especially small joints in my hands and feet. This is probably contributing to my slow recovery from my sprained ankle, but also requires me to use my hands differently.

Not too long ago, the fingers in my right hand gave way when I was holding a backpack. That’s it. Nothing special. In fact, it took my a while for me to figure out what the heck I had done to my hand. I heard a loud crack, and then my hand turned swollen and bruised. That was the signal that my symptoms were progressing and I had to add to my list of things to think about. Everything from opening jars, to pouring milk now requires careful consideration. How can I perform this action in a way that cause minimal injury to my hands?

But this is just the latest in a long list of things I have to manage. Should I book that two-hour tour in Hawaii, because what would happen if my colitis flared up in the middle of the tour? I’m pretty sure there are no washrooms on the trail. I can’t read when I’m commuting on the train because the stiffness in my neck makes it incredibly uncomfortable to look down for that long. I avoid touching and railings or handles in public spaces because my medication leaves me with a severely weakened immune system, so one wrong move can leave me suffering from an infection for weeks. I have to develop strategies for sitting still for long periods like in a movie theater off on a flight, which usually involves more medication. I can never leave the house without sunglasses because the eye inflammation makes me seriously sensitive to light and can cause migraines otherwise.

So now with my new symptoms, I get to think twice about how I pull laundry out of the washing machine, how I plant my feet going down the stairs, how I carry my backpack. Not only does chronic illness involve debilitating fatigue, but this level of thought required for every action is mentally exhausting. All of this is in addition to managing my family of five.

So dear friends and family, I’m sorry if I don’t like going out after work or driving far away for a great restaurant. I’m worried about having energy for my next day at work or having a bout of colitis from the restaurant meal on the long drive home. And I’m exhausted from all of the micromanaging.

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Thinkstock photo by Maria Kuznetsova