Tag Archives: lyme fatigue

My Lyme Disease Is In Remission. How Do I Keep It That Way?

by Jennifer Crystal

The first time my doctor said the word “remission” for my late disseminated Lyme disease, I cheered.I’d been in treatment for Lyme and two of its co-infections, babesiosis and ehrlichiosis, for over a year. I’d been on a PICC line, I had experienced many Herxheimer reactions, and I had finally regained some energy. I was having more good days than bad, could exercise at physical therapy, and my brain fog had dissipated enough for me to be able to write a book. I was doing so well that my doctor decided to take me off of antibiotics entirely.

Less than three months later, I relapsed.

Not fully understanding what it meant to have a chronic illness—one that wasn’t entirely going away, even when it was in remission—I’d acted as if I was completely over Lyme. After living with family during my convalescence, I was ready to get back out on my own, so I moved to a different state and started a new job. This turned out to be too large of a leap. The stress of taking care of my own needs, working part-time and worrying about finances, and the lack of defense in my body created a perfect situation for dormant Lyme bacteria to start replicating and spreading once more.

It took another couple of years for me to get back to remission.Once there, I had to accept that late-stage Lyme is a relapsing illness. For some patients who are treated immediately, Lyme can be cured. But for many of us who were undiagnosed for years and battle persistent physical and neurological symptoms, we always run the risk of relapse. While we can’t necessarily control what spirochetes will do, we can control external factors in our lives that can help us stay healthy for long periods of time. With the exception of minor flare-ups, I have maintained remission for over a decade now. Here are some ways I’ve been able to do so:

  • Medication: For me, it has helped to stay on low-dose antibiotics and a low-dose anti-inflammatory medication. I also do a maintenance anti-malarial medication every few months to keep babesiosis at bay. I have my blood checked every two months to make sure these medications are not adversely affecting me. This is the system that has worked best for me, but it’s not for everyone, because there is no set protocol for treating tick-borne illness; every case is different. Some people find it helpful to pulse medications. Others have luck going off them entirely, and some switch to a completely naturopathic route. Talk to your Lyme Literate Medical Doctor (LLMD) about what’s best for you.
  • Naturopathic/homeopathic remedies: For me, the best way to treat tick-borne illness and maintain my health has been with a blend of Western and Eastern modalities. In addition to medications, I also take some immune-boosting naturopathic and homeopathic supplements.
  • Nutritional Supplements: Lyme disease, and some of the medications that treat it, can deplete your body of important nutrients. It’s important that you have regular blood work to check your levels for vitamins, iron, etc., and for your doctor to prescribe supplements to counter any deficiencies.
  • Diet: I don’t eat gluten and only eat natural sugars, and I don’t consume alcohol or caffeine. For some Lyme patients, eliminating dairy also helps reduce inflammation. I’m conscious of everything I put into my body, trying to nourish it and give it the best fuel possible. I eat lots of fruits and vegetables, whole grains, and lean protein, and I drink plenty of water. I also remember that it’s important to sometimes treat myself, too.
  • Adjunct therapies: When I was acutely ill, I did talk therapy, integrative manual therapy, and neurofeedback sessions several times a week. I also did physical therapy once I was able to. Now I do talk therapy as needed, integrative manual therapy twice a month, and neurofeedback once a month. I also exercise on my own: skiing in the winter; paddle boarding, kayaking and swimming in the summer; and walking and yoga year-round.
  • Good sleep hygiene: One of the worst symptoms I dealt with was insomnia, and even when I could sleep, I had hallucinogenic nightmares. It took neurofeedback, sleep medication, and cognitive behavioral therapy to get my sleep relatively back on track. Now I’m careful to go to sleep and wake up at the same time each day; to power down electronics and quiet my brain before bed; and to keep my room completely dark and quiet. I also nap every afternoon. Your body needs adequate rest to stay healthy.
  • Recognize and accept your needs: If you’ve achieved remission, you’ve come a long way, and you don’t want to lose the gains you’ve made. Still, it can be hard not to focus on the losses you’ve endured, as well. I had to learn to accept and respect my physical and neurological limits, seeing them as needs rather than restrictions.

Accepting that tick-borne illnesses can relapse is not easy, but shifting my perspective and practicing good maintenance routines has helped me to stay healthy—and happy, too.

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Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. Her memoir about her medical journey is forthcoming. Contact her at [email protected].

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 [email protected]

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 [email protected]