In 2007, I suffered a severe relapse of Lyme and two of its tick-borne co-infections Babesia and Ehrlichia. I had been in remission just a few months before I crashed back to ground zero. It took another couple years for medication and adjunct therapies to help me get back on stable ground.
I say “help me” because those therapies could only do so much of the work. The rest was up to me. I had to accept my illnesses and the limitations they imposed on me; this strategy became part of my “fight” against them. I had to make behavioral or lifestyle changes that would help my body heal, rather than just expecting it to do so regardless of how I lived.
One of those changes was creating and sticking to a strict schedule. My sleep doctor taught me that medication and neurofeedback would help my raging insomnia and hallucinogenic nightmares, but I also had to have good sleep hygiene. That meant going to bed and getting up at the exact same time every day. It also meant taking naps at the same time every afternoon. If I pushed my bedtime or nap-time too late, I wouldn’t be able to sleep, and everything would snowball until I was a melted down mess.
People who didn’t understand neurological Lyme disease thought I was too regimented. They laughed as if to say …
Would it really kill you to stay up an extra 15 minutes? Is it really that big a deal if you don’t get a nap today?” The implication being, “Can’t you be a little more flexible?”
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Now that I’ve been in remission and steadily getting healthier for over a decade, I can be a little more flexible. Some nights I can push bedtime an extra hour and not pay for it too severely. But back when my health was super-fragile, there was no margin for error.
Even though I have some wiggle room with bedtime now, I do not have the same flexibility with nap time. If I lay down by 1:30 P.M. every afternoon, I get a good, comfortable nap, and wake up refreshed and ready to take on the rest of the day. If I push just half an hour until 2 P.M., everything starts to fall apart. My brain fog rolls in, I get cranky like a toddler, and I become too tired to fall asleep. Then I spend my time in bed anxiously rolling around, not getting the rest I need, and the remainder of the day—and sometimes the next day—is a wash. That half an hour is precious to me, so I’ve had to learn to advocate for it. I’ve had to learn what my limits are, which boundaries I can push and which I cannot. I had to learn to schedule my life—teaching, writing, socializing, accordingly. This discipline is, I’ve learned, the only way for me to control my tick-borne illnesses, rather than allowing them to control me.
The same is true not just for my daily schedule—which includes taking medications at the same times every day, and sticking to a consistent gluten-free, sugar-free diet—but for my weekly and more general schedule, too. When I was recovering from my relapse, I wanted to get better as soon as possible and thus scheduled more therapies and appointments than I could physically handle. I quickly realized that I did not have the energy to go to talk therapy and physical therapy on the same day. Conversely, my brain really needed three neurofeedback sessions a week instead of two. I started parsing out my week: physical therapy on Monday, neurofeedback on Tuesday, talk therapy on Wednesday, neurofeedback on Thursday, and so on. Getting well could not be rushed. It had to be my full-time job.
While I no longer need weekly medical appointments, I am still careful to stick to a schedule that works for my health. I teach classes in the mornings or evenings. I only write in the mornings, and not on days that I’m teaching. I don’t exercise during the week if I know I want to go kayaking or skiing on the weekend. I still go to maintenance integrative manual therapy and neurofeedback appointments every month.
I wish there was a magic schedule formula I could give all Lyme patients. But just as there is no set protocol for treating Lyme and co-infections because no two cases are alike, there is no set way for living your life with these illnesses. You have to learn your own limitations, and be willing to schedule your life within them. You have to learn your own boundaries and be willing to speak up for yourself. You have to learn which of those boundaries you can push and know what the consequences will be if you do so. And most importantly, you have to ignore other people’s opinions about your schedule. No one knows your body and its particular needs better than you do!
Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at email@example.com