by Jennifer Crystal
Fatigue is such a central part of Lyme disease that it can be easy to overlook. Don’t.
Recently I was on the phone with a friend telling her my woes. Angst about one area of my life led to anxiety about another, until I’d snowballed into an overanalytical, weeping mess.
“I think you need to just go to sleep,” the friend said.
I looked at the clock. It was almost my bedtime. Maybe I was just tired. Maybe in the morning my issues would seem smaller and more manageable.
Of course, they did. With a good night’s sleep, I was able to look at things with a clearer mind and more centered emotions. This was hard for me to understand when I was so tired because fatigue—especially the crushing exhaustion of Lyme—can make it impossible for us to see straight. It can make it difficult for us to recognize that when we’re feeling like our worlds are falling apart, sometimes the only real problem is that we’re tired.
Fatigue is such a central part of Lyme that it can be easy to overlook its various gradations. Lyme patients are tired, to some degree, all the time. For years, I struggled with a flu-like fatigue that left me shackled to the bed. Walking to the bathroom, lifting a dish from the table, and drying my hair were physically overwhelming tasks. Despite that incredible exhaustion, I was often unable to fall asleep, turning me into what my doctor once described as “a woman with her hair on fire.” A person is considered legally insane if they haven’t slept in 72 hours. At times I was awake for weeks on end.
After months of antibiotic treatment complemented by appointments with a sleep specialist, neurofeedback sessions, cognitive behavioral therapy, and sleep medication, I eventually was able to get a good night’s sleep. Of course, it’s all relative; those nights often still included heavy sweats and crazy nightmares, but at least my brain could rest. Over time the bad nights lessened in severity and frequency, and I was able to get more restful sleep, including restorative afternoon naps. With more hours logged in my sleep bank, my overall health improved. My body was finally getting the rest it needed, and my symptoms started to abate. Moreover, I became less of that weeping, emotional mess.
The problem with this chronic illness is that sometimes old symptoms flare, and when that happens, it’s hard to figure out what’s what. Fatigue can return virtually unnoticed. Even with my improved ability to sleep, I still get tired when I push myself physically or neurologically, and sometimes it’s hard to see that I’ve pushed too hard until it’s too late. Then, suddenly, I get overly tired and overly emotional. My thoughts grow repetitious. The songs and words that are always running in my head get louder. These flare-ups remind me of my worst Lyme days, and I start to worry that the castle is crumbling. Is my anxiety a sign I’m relapsing or neurosis? If I can’t nap for two days in a row, will I ever be able to nap again? Have I done myself in?
“No,” my mother tells me every time this happens. “You’re just tired.”
And almost always, after a neurofeedback session and an integrative manual therapy session and several good days of rest, my body and mind calm down. I return to my baseline of remission, where I function within a structure of good rest, where I work and write and socialize, where I offer a steady hand to friends needing emotional stability instead of the other way around.
When I was in high school, I struggled with math and science. Recognizing my tendency to overthink answers, my biology teacher used to walk by my desk during exams and whisper, “K.I.S.S.” The acronym stands for “Keep It Simple Stupid” and was first used by the U.S. Navy in 1960 as a design principle: designs work best when they are simple and not complex.
Same is true for our thoughts when we are overtired. Sometimes we do have issues that cause true anxiety, and sometimes symptom flare-ups are true signs of trouble. More often than not, though, we simply need sleep. I try to keep that in mind now when my hair starts to blaze. Next time, before I call a friend and let loose a snowball of angst, perhaps I’ll just crawl into bed and make the call in the morning, when things are almost always better.
Opinions expressed by contributors are their own.
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