Tag Archives: lyme fatigue

The Double-Edged Sword of Boredom

by Jennifer Crystal

Are you bored of being bored? Pace yourself.

 

With the holidays over, winter is settling in to its usual slow rhythm. If you don’t love winter activities like skiing and snowshoeing, let’s face it the season can get downright boring.

Lyme patients and other housebound people wrestle with boredom every season, but it has a different meaning for us. When a friend heard I’d been bedridden for months, she exclaimed, “Oh you must be so bored.” I remember thinking, I wish. I was so exhausted and wracked with pain that I couldn’t think about anything except how awful I felt. I was too physically and neurologically impaired to do typical sick-day activities like watch a movie or read a book. Emailing hurt my fingers; playing cards wore out my arms; listening to audiobooks was confusing.

I realized that boredom had taken on new meaning for me. When I was little and home sick from school, getting bored with the aforementioned activities meant I was getting better. As an adult with Lyme, I wished I felt well enough to even do those activities. “Normal boredom” became something I craved. I lay in bed achy and feverish, unable to sleep. Every time I glanced at the clock, I couldn’t believe only five or ten minutes had passed.

As I started to get better, I was slowly able to do regular sick-day activities. I could type a couple short emails before my hands tired out. I could have a brief conversation on the phone. I couldn’t read a book, but I could skim a light magazine. I could watch half-hour game shows, shouting answers from the couch. People would say to me, “You’re getting excited about “Wheel of Fortune”? You really need to get out more.” What they didn’t realize was that for me, watching what they considered to be a boring show was a sign of health.

Unfortunately, boredom can be a double-edged sword when you’re sick. When I started to get well enough to tire of magazines and TV, I wanted to go out and do all the things I’d missed in the years that I was so sick. I dove in headfirst—who wouldn’t?—and that sent me right back to bed.

“I don’t get it,” I whined to my doctor’s PA. “I was feeling so good. Then I went to the gym and rode a stationary bike for five minutes…”

“…And you crashed,” she finished my sentence.

“Yes! How did you know?”

The PA sighed. “This is a typical problem for Lyme patients. I hear this over and over, that people want to jump right back into activities, and they don’t pace themselves. With Lyme recovery, you have to go really slow.”

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This wasn’t what I wanted to hear. I’d been living slowly for years. My recovery had gone at a snail’s pace. As soon as I felt better, I wanted to move right into the fast lane. But Lyme doesn’t work that way. Five minutes on a stationary bike was four and a half too many. I had to start at thirty seconds, and recover from that effort for a week before trying again. When I was ready, I moved up to forty-five seconds. I continued to increase in small increments, sometimes having to take a two-week break. It was a slow, spiraling challenge to get to five minutes without crashing, but I did it.

I realized that while pacing myself was boring, it was important.

I still pace myself, and that allows me to now ride a recumbent bike for over an hour on a real road, up and down hills. I paddleboard. I ski. I teach. I write. And I nap. Forcing myself to rest in between activities can be frustrating, but the tedium of naps and off-days is far better than the monotony of being ill.

These days, I relish “normal boredom.” I love evenings when I have time to read a book, and I feel well enough to do it. Boredom no longer feels like a double-edged sword; instead, it feels like something I have the power to slay.

If you are feeling bored, don’t despair. It’s a sign that you are getting better. Embrace it. Before long, you’ll be out doing the activities you love. Or hibernating inside with a good book, just because you can.


jennifer-crystalJennifer 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 jennifercrystalwriter@gmail.com

Halloween: No Costume Necessary

by Jennifer Crystal

I never liked playing dress-up as a kid. I didn’t like pretending to be someone I wasn’t.

 

Sure, I could get into the spirit for Halloween. There are photos of me dressed as a blue crayon, a bag of M+Ms, as a pair of lips blowing a big pink bubble, next to my best friend who was a pack of gum. But for the rest of the year, the makeup was off and the costumes remained in a trunk. I didn’t want to be a princess, a fairy, or as was fashionable in my youth, a punk rocker. I just wanted to be me.

Then I got Lyme.

The disease that had masked itself for years in my body came raging forth with such virulence that it turned me into a bedridden shell of my former self. That former self knew resolutely who she was. She was a teacher, a skier, a runner, a traveler, a social butterfly. She had driven cross-country five times (joking that was four too many); she had backpacked across Europe and battled deep powder in the Back Bowls of the Rocky Mountains. She was fun, ambitious and full of life.

Then, suddenly, she was none of those things.

My youthful aversion to dressing up seemed to return to haunt me. Lyme forced me to be someone I didn’t want to be. I didn’t want to be sick. I didn’t want to spend my days in bed. I didn’t want to be in pain. I didn’t want to be sad and angry, frustrated and scared.

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Who does? No one likes to be sick. Everyone feels out of sorts when they have a cold or the flu. Unfortunately, Lyme is like an endless flu. For months and sometimes years patients wake each day with the same aches, the same migraine, the same fever, the same exhaustion. Lyme sucks the life out of us, and after awhile, we start to lose sight of who we are. We feel shoved into a costume of illness—one we certainly didn’t pick—and we want nothing more than to tear it off.

That costume is snug. It wraps patients like mummies. There are no zippers or buttons to break free. In reality, Halloween lasts one day—maybe two or even a week if you can find enough parties. But then you take your costume off. You can choose to put on another costume at another time, just for fun. Lymies don’t have that option.

If the outside world could see how ugly the costume of illness is—how little it resembles who we really are—they might not say, “Maybe you just need to exercise more” or “You just need to get out and do something” or “You’d feel better if you were working” or “It’s all in your head.” That fun-loving, high-achieving, mountain-conquering person I once was—the one who was hidden under illness—wanted nothing more than to go for a run, get a job, or get on a plane and leave the world of convalescence behind—but I couldn’t.

After years of treatment, I’m much freer now. The illness has not completely discarded like a costume in a trunk, but it’s still loosely hanging around my ankles. Parts of myself that were completely stifled by Lyme and its co-infections are finally liberated. I’m not gallivanting around Europe, but I can take short trips. I’m not conquering the Alps, but I can spend a morning on a local ski hill. I can’t work a traditional 9-5 job, but I can write. So while I could dress up for Halloween, I’m not going to do so. Because the only person I’ve ever wanted to be is myself. And now that she is back, I’m not going to do anything to cover her up. Been there, done that!


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 jennifercrystalwriter@gmail.com.