A couple of weeks ago, we had glorious spring weather. The cherry trees blossomed. Then, last Monday, it snowed. Not the here-this-morning, gone-by-afternoon flurries we expect in early April, but snow, hail, and sleet that kept falling all day. After that came temperatures in the 20s. I took my long underwear back out of the drawer. I’m wearing it now.
Hang in there, we tell each other. Spring will return. We just have to be patient.
And it’s true. February-in-April won’t last. It’s in the 40s now—not balmy, but at least the pipes won’t freeze.
Here’s my problem: this unpredictably nasty weather is a discouraging echo of my health. I’m feeling better—oh wait, now I feel crummy again. My fatigue has lifted. Nope, this morning I lay in bed for 20 minutes before summoning the energy to sit up. My back pain has lessened. But now my legs hurt. The memory problems are worse than before—as far as I can remember.
This year, as in each of the last three, I’ve been hopeful that spring would bring a long-term improvement in my health. So far, I don’t have evidence to support that hope.
What is different this spring is that I have doctors who believe there’s something wrong with me—something other than my psychology, that is—and who want to help me get better. I have a diagnosis and a treatment plan. I’ve completed two rounds of antibiotics and am working with the doctors to figure out what comes next. Some signs suggest the treatment is working.
But, given the up-and-down course of both the illness and the treatment, I can’t really say I’m feeling better. Some days yes, some days no. Some old symptoms abate, some flare up. New symptoms have appeared. A week of April, a week of February.
Even with global weirding on the rise, the calendar assures us that spring weather will prevail, followed by summer. But I don’t have a calendar to predict the seasons of Bartonella. That’s the Lyme-like tick-borne infection that my doctor thinks I have had since my second Lyme disease diagnosis in 2012, or perhaps since the first one in 2007, or maybe even longer.
Medically speaking, I’m a pretty good patient. I eat well, I get plenty of rest, I try to exercise without overdoing it. I try to understand my diagnosis and treatment plan so I can think for myself while also trusting the doctors’ experience and judgment. I read all of the pharmacy instructions that come with my medications, and I comply with a fairly complicated regimen.
I’m a good patient. But I’m not good at being patient.
Over the years I have worked hard to cultivate patience for other people. When it comes to patience for myself, I have a long way to go. As I feel a bit better, I think I should swing into action, start living more like a normal person who is capable of normal activities. When I unexpectedly feel worse, I wonder whether I’m taking good enough care of myself or whether the flare-up stems from some mistake or fault on my part.
Did I mention I also have trouble with uncertainty?
Uncertainty abounds. My diagnosis is a highly educated guess by a doctor who’s an expert on Lyme and other tick-borne diseases. So dismal is the research on these illnesses that reliable blood tests are not available, so he can only guess. The treatment is also guesswork, guided by the doctor’s clinical experience and my own response to the drugs he prescribes. There’s a lot of wait-and-see.
Meanwhile I am trying to attend to my health without becoming my illness. I’ve been struggling with that for a long time, since before I had a diagnosis.
Being sick, knowing I’m sick and not just psychologically tormented (“How are you doing on your bed of nails?” my mother asks), lets me off the hook a bit. It’s not my fault that I feel lousy. Well, not entirely my fault. But my yetzer hara, my inner critic, is always eager to assess blame. It is always telling me that I should take better care of myself, but also that I should shake it off, be more motivated, get more done.
Right now the yezter hara is reminding me that I need to do laundry, take out the garbage and recycling, work on the Passover cleaning. There are financial chores to do and family members I haven’t called in a long time. But the sun is shining, Weather.com says it’s 47 degrees, and I’m going for a walk. With patience, or at least as a patient.
What is the Mary Oliver Challenge? Glad you asked. You can read about it here.