It’s high time I started writing about my life and Lyme disease. There’s more to life than Lyme, and there’s more to Lyme than most people know. My experiences are depressingly familiar to anyone who has been misdiagnosed, and then diagnosed with Lyme disease. I’ve lost nearly a year to Lyme, a long slog in which there were no guarantees that I would ever be well, or that the medicines would stop making me so sick.
Before I go further, I suppose I must define how sick I was. The clearest measure has been what close friends and family have told me now that I’m almost back to normal. “It was bad, really bad” was a phrase I heard over and over, from my dad, my daughter, my close friends in Denver, and a two close friends from Minneapolis and New York who saw me during this time. I don’t have a handle on this, I was too sick to notice how the hours, days, weeks and months slipped by. I do know that I marked my days by the most minimum of measures: medicine, food, pets, and more medicine. A good day meant getting up, making the bed, and doing the mundane chores that make up a life: grocery shopping, cleaning the house, doing laundry. It was as if by doing those basic things I wasn’t as ill as feared. But I was.
Now I smile when I wake up. I don’t lay there assessing how I feel. I get up, get my coffee and face the day. I still take medicine, and I still have bad spells. That’s okay, what’s harder is re-entering my own life. It’s like I’m rusty at living. Interacting with bureaucracies, handling schedules and work and play, they all seem more difficult than they should be. What comes easy is waves of joy. Joy that I have emerged, mostly intact. Joy that I have people who care about me in my life. Joy that I can drive myself wherever I want to go. It is the simple things. Sometimes the simplest things are unappreciated until you can’t do them.
A friend of mine, a curmudgeon of the first order, once called me the ‘most relentlessly optimistic person he’d ever met’. I chose to take this as a compliment. Things this blog is NOT about include the science of Lyme, a catalog list of my symptoms, and whining. There are several fabulous sites about Lyme, http://ilads.org/ is one, https://www.lymedisease.org/ is another. I am interested in how having a chronic, serious disease has changed me, for better or worse. Often, when I was having a bad day, I imagined myself on a self-imposed pilgrimage, where my only job was to contemplate my past, present and future. This is how it turned out.