by Jennifer Crystal
Changing clocks, Lyme disease, and Herxing
Twice a year I dread changing the clocks. Even in spring when extra daylight heralds warmer, brighter days, I know the shift will cause a dark period for me. It’s worse in autumn when twilight comes so early. The time change is an adjustment for everyone, but for Lymies, it can upset our already unstable circadian rhythms, causing sleep disturbances and an uptick of neurological and physical symptoms.
Twice a year I have to remind myself, it’s not real.
Of course, the time change is real. The loss or gain of an hour is real. The symptoms I experience are real, as are the frustration and anxiety that often accompany them. But they are not representative of a normal, “real” period for me, and that can be hard to remember when I’m in the throes of a flare-up.
Luckily, I have friends to remind me. One friend in particular taught me this important lesson years ago when I was in the midst of a Herxheimer reaction and absolutely beside myself. “Herxing” is when antibiotics kill bacteria faster than your body can eliminate them, causing you to feel worse before better. A body riddled with both live and dead bugs is a sick body indeed. When those active and slayed spirochetes are also in your brain, the situation goes from awful to unbearable. In that space, it’s hard to see what’s really going on. You need someone to say, “It’s not you; it’s a bug in your brain,” as one support group leader told me. Or you need a friend to tell you, “It’s not real.”
I remember sobbing to that friend on the phone as I lay twisted in my bed, rocking back and forth and wrapping my arms around myself. “I’m never going to get better,” I sputtered. “This is the worst I’ve ever felt. I’m only getting worse. I can’t sleep and my brain is racing and I’m too exhausted to even breathe and everything hurts and I can’t sleep and…”
“Shh,” my friend soothed. “It’s not real.”
This was an empathetic friend, so I knew she didn’t mean “it’s all in your head.” Instead of boiling over with anger, I paused in my tirade.
I was months into treatment, and my friend had been through these ups and downs with me. That meant she knew the ups had existed before and would again. “This is just a terrible period you’re going through,” she said, “but it’s not really how you usually feel. I know you always feel sick. But this is especially bad, and it is going to pass. Your body has worked through this process before, and it will again.”
I took a deep breath. “You really think so? What if my antibiotics aren’t working and I need to switch them up?”
Ever the diplomatic problem-solver, my friend said, “How about this. How about you give yourself a week to let these symptoms settle out. If you’re feeling worse in a week, then talk to your doctor about maybe switching things up. But give yourself the time to see if these symptoms are your new real.”
Of course, she was right. The flare up wasn’t my new real. Within a week the Herxheimer reaction had settled down. I wasn’t feeling great, but I was no longer ready to jump off the deep end. My exhaustion had moved from excruciating to debilitating, which for me was normal. The insomnia had calmed down a few notches, and I’d gotten some sleep. I was back on an upswing, heading to my regular normal and not long after to an even better version of “real”.
The autumn clock change causes the same type of literal fall back I experienced during that Herxheimer reaction. Now that I am in remission, the resurgence of symptoms is thankfully not that bad, but it still makes me panic. It’s easy for to slip into a state of, “Oh no! My sleep is off! I’m so tired! I’m so irritable! I’m relapsing!”
I’m not. By next week, it’ll undoubtedly get better, just as it has every time I’ve had an upset from stress or from travel. If you are struggling with the clock change, let me be the friend to tell you, “It’s not real.” This too shall pass.
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 firstname.lastname@example.org