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by Jennifer Crystal
Time management is not easy for the chronically ill, but these tips have helped me to make my life not just manageable, but also enjoyable.
During my acute phase of Lyme disease, babesiosis and chronic active Epstein-Barr virus, I once emailed a friend telling him my plans for the week. I had physical therapy on Monday and Wednesday, neurofeedback for sleep disturbances on Tuesday and Thursday, and talk therapy on Friday. “If I have energy,” I added, “I’ll do some writing one morning, or over the weekend.” “Do you like having your schedule all mapped out like that?” he asked, remarking that it didn’t leave much room for spontaneity. Whether I liked it or not, planning a weekly schedule was the only way I could manage these appointments, take care of my physical needs (such as infusing intravenous antibiotics, and not suffer a setback from doing too much at once. To even have a shot at doing something I wanted, in addition to things I needed, I had to manage my time judiciously. As I discussed in my recent “ Saving Spoons: Not Just of Energy, But of Time” post, chronic illness patients have less energy and less time to spend it, than most healthy people. While everyone has demands that make time management tough, chronic illness patients have to use up energy and time—represented as a daily allotment of “spoons”—on treatment and therapies. Daily tasks like showering, dressing, and cooking also take away spoons. Moreover, many patients only get a few good hours of energy a day, so they have to fit their lives into a condensed period. I often feel like I’m racing against an hourglass. Once my spoons are gone, they’re gone. Over the years, I’ve learned a few tricks to help manage my limited time:
  • Set a schedule: Think about what you need to get done in a week, and then think about how much energy you can realistically spend on each task. Writing out a schedule will help you visualize your availability and know what the focus will be for each day (or within each day, for each hour).
  • Don’t bite off more than you can chew: This can be easier said than done for anyone because we all have commitments and deadlines. Patients who have lost time to illness often want to rush right out and spend energy as soon as they get it, but that can cause a setback. It’s better to recognize your limits —or, framed in a more positive way, to recognize what you’re realistically capable of in a day or a week.
  • Build-in margin for error: If your schedule is packed to the minute, you won’t be able to handle even the smallest of unexpected schedule changes: a phone call, an extra-long line at the pharmacy, the realization that you forgot to buy milk. Chronic illness patients need bigger margins in case of flare-ups, which can unexpectedly eat up entire days or even weeks.
  • Don’t procrastinate: When I was in college, I used to wait until the night before a paper was due to start it. There was a certain thrill in pulling an all-nighter and finishing my work just as the deadline approached. There’s no such thrill when you are managing a chronic illness, because there’s no such luxury of time or energy. If you wait until the last day to complete a work assignment, you might have a symptom flare that day, and then you won’t be able to meet your deadline.
  • Learn your best times of day: My energy is best in the morning, so that is when I do creative work: writing blog posts, making lesson plans, writing a book chapter. Brain fog sets in during the afternoon, and I need to nap. Later in the day, or in the evening, I’m able to do editing work, such as fine-tuning a chapter or commenting on a student’s essay. I’ve learned that doing creative work in the evening riles up my neurological symptoms to the point that my sleep is impacted. Figure out when it makes the most sense for you to work, go to appointments, take care of family needs, etc.
  • Set boundaries: It can be hard, and even embarrassing, to set limits, whether it’s “I can’t meet in the afternoon because I have to nap” or “I’m not available in the morning because I’ll be at an appointment.” But the consequences of pushing your limits are often worse than any discomfort about setting and sharing them. Focus on what you can do—“I’d be glad to meet at noon that day”—rather than what you can’t. Also, remember that you don’t owe anyone an explanation. Most people know I nap in the afternoons (since I write about it publicly!), but I could just as easily say that I’m simply not available during those hours.
  • Practice saying no: I’m a people-pleaser, so this one is especially hard for me. But saying no is part of setting boundaries. It’s better to say no upfront than to say yes and pull out of a commitment later. I’ve found that my worry about someone’s reaction is usually far worse than their actual reaction. The more I practice saying no, the easier it becomes.
  • Stop while you’re ahead: I teach a creative writing course called “Writing to Heal,” and tell students to set limits on the amount of time they spend writing intense material. Even if they’re in a good writing groove, I encourage them to take breaks at set intervals, before they feel overwhelmed.
  • Build-in time for fun: This is hard for everyone in a pandemic, when people are working remotely, families are together all the time, and there aren’t many places to go. It’s always hard for chronic illness patients who have limited energy and time. Nevertheless, balance is critical to health, and it’s just as important to schedule a walk with a friend as it is to schedule a work meeting. Even if you’re bedridden, you can find ways to add joy and pleasure to your life.
  • Build-in downtime: Down-time is not the same as fun. Fun is about connecting with others or doing activities you enjoy. Downtime is about settling your body and brain before sleep. Power down electronics, darken the lights, listen to gentle music, meditate—do whatever it takes to help you relax.

Time management is not easy for the chronically ill, but these tips have helped me to make my life not just manageable, but also enjoyable.

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Jennifer Crystal

Writer

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 using her email.

Email: lymewarriorjennifercrystal@gmail.com