Tag Archives: lyme recovery

Don’t Settle For Good Enough

by Jennifer Crystal

In life, were often told not to settle. We dont want to take a job or enter a relationship simply because it seems good enough. Doing so might bring short-term gains, but in the end, it wont fulfill what were really striving for, and we’ll feel short-changed. We deserve better. 

The same is true for recovery from tick-borne illnesses.

I can see this now, a decade into a remission that has allowed me to make steady gains each year (even though, like all Lyme patients, I have set-backs along the way). No ones healing path is linear, and a Lyme patients is particularly convoluted. But despite detours, the path towards Lyme recovery is moving ever forward, albeit haltingly.

When youve been on that path for so long and have started from the lowest point, as I have, any improvement feels good—especially if it’s sustained improvement. If you make it halfway to remission, you might rationalize matters thus,Gee, I feel so much better than I did when I was bedridden; this far is good enough.

That’s easy to say this when youve suffered physically, emotionally, and mentally for so long. When you have brain fog, when you’re in too much pain to walk, and when you feel shackled to the bed with migraines and fatigue—after suffering so much you’re tempted to settle for any improvement. When you have insomnia, any amount of sleep—even if it’s full of nightmares and dread—is better than no sleep at all.

It’s often good to have a glass-half-full mentality and to be able to appreciate small improvements. Such a grateful mindset helps in the healing process. The problem is when gratitude shifts to complacency. When we say This is good enough,it’s a problem because we’ve forgetten how much better life can actually be.

In a relationship, complacency can grow from comfort. You might tell yourself, Im not entirely fulfilled with this person, but he or she is kind enough to me, makes good enough money, and we get along well enough. A relationship like this is comfortable, but lacks passion. Sometimes it lacks love. If it were graded, itd be a C or at best a B, not an A or an A+.

Of course, no relationship can be an A+, at least not all the time. No one is perfect, and no one can be a perfect partner all the time. But we can aspire to an A+ relationship. Searching for perfection is laudable even if it almost always leaves us wanting. But theres a big difference between seeking perfection and settling for good enough. In between those extremes, there is a broad range of  hope and possibility.

The spectrum of Lyme recovery is similar. When youve been so sick for so long, you can forget what true health feels like. As you start to make steady gains, you are so grateful to be feeling somewhat better that you let go of the idea of trying to feel your best. Feeling 50% is pretty darn good for a Lyme patient. That might mean youre up out of bed most of the day, that your joint aches are gone or minimized, that your headaches are less frequent, that you have to rest a lot, sure, but you can work or socialize a little too. Compared to a bedridden life, those gains feel fantastic. Its easy to accept them as good enough. Its even possible to kid yourself into thinking that 50% is really 100%, because its been so long since you were really healthy that you’ve forgotten what true, full-bore wellness is like.

I continue to relearn this lesson as I make more and more health gains. I know Im much, much better than I was a decade ago, but I sometimes dont see how much I’ve slowly improved during my decade of remission. When I first moved to Boston and started graduate school, I said to my friends, If this is as good as it gets, Im fine with that. My life isn’t ‘normal’ by most peoples standards, but its manageable. I can live like this.And I did. Life was fine, comfortable, even happy.

Had I stopped doing any of my adjunct therapies, never pushed myself to extend my limits or slowly try new exercises, I probably would have stayed at that good enoughstage for years. It would have been adequate, but merely that. I would have never known what else was possible.

A few years after starting graduate school, I was able to ski a couple runs one morning. I only skied that one day that season, and that was enough. But the next season I skied two days—spaced far apart from each other. This year Ive already skied three days—two of them only a few days apart from each other. I can do that because Ive been steadily working to get a bit stronger each year, and I have gotten better at asking for help (Here,” I’ll say, “you carry the skis—I’ll carry the poles—that will buy me energy for one or two more runs.”)

Another example is travel. At my sickest, travel from my front door to the mailbox was out of the question. Eventually being able to drive my car, even if it was just to the pharmacy, felt great. Then driving within state lines had seemed an exceptional accomplishment. When it came time for my first plane trip—a two hour direct flight—I panicked. I wondered if I was really well enough to do it. I was, but it took a lot out of me and a long time to recover, and I didnt travel again for awhile. But when I did travel again, I was that much healthier, and had more confidence, too, in my capacities, and so was able to go that much further. I flew from Boston to Florida and enjoyed my time there. Last fall I flew to Mexico, something I wouldnt have thought was even in the realm of possibility just two years ago.

Will I ever be able to take a flight to Europe or travel across many time zones? As my health stands right now, the answer is no. And my life right now is really good. Still, though, I dont want to say its good enough. I want to keep striving to be healthier and even more capable. Maybe I’llnever be able to travel as far as I want. But that doesnt mean Ill settle, because who knows? Maybe in a year or two or ten I will be able to make that flight.

So I’m going to keep striving A or A+, just in case.

 


jennifer crystal

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She has written a memoir about her journey with chronic tick borne illness, for which she is seeking representation. Contact her at: 

lymewarriorjennifercrystal@gmail.com

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