Living with Fatigue: How to Save Your Energy for the Things That Matter
Some people think they’re tired. Then there are people with fatigue from a chronic disease, which takes exhaustion to a new level.
“The outside of your body is not working, and you can barely move, but everything else is functioning—like your brain—and you want to get up and run, but you can't,” says Gina Cavalier, 51, a Los Angeles–based mind-and-body-wellness business owner who lives with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Gina’s fatigue comes along with many different physical and emotional frustrations: muscle aches, a sore throat, brain fog, embarrassment, guilt, shame, and loneliness.
Fatigue can be attributed to ME/CFS, or it can be a symptom of another health condition or disease, or the cause can be unknown. No matter the cause, if you live with fatigue, you may need to develop some coping mechanisms to make it through the day.
Joni Kazantzis, 39, an advertising and operations director in Princeton Junction, New Jersey, says sometimes her fatigue from psoriatic arthritis comes out of nowhere or strikes after she’s gone full speed for a few days or weeks. “It forces me to take some time to rest and reset, which is a good thing,” she says, “but it’s incredibly frustrating when I have things to do or places to be.”
Christine Miserandino, the woman who coined the term “spoon theory,” once illustrated what it’s like to live with chronic illness or fatigue by using spoons on a table. The spoons represent units of energy, and you only have a limited number to use throughout the day before you run out. Every task in your day, big or small, uses at least one spoon. And when you’re out, you’re out.
Unlike people who are well, having enough energy stores isn’t a given when you have fatigue from a chronic condition—they’re a finite resource often in need of a refill. So, it’s a good idea to design your routine with this reality in mind.
6 Ways to Combat Fatigue from a Chronic Illness
Everyone’s different, and what works for one person might not for another. But sometimes, tips from people who are fighting similar battles can inspire your own approach. In this spirit, we asked five people who experience regular fatigue from a chronic illness to share how they ensure that they have enough juice for the activities that matter most to them. Here’s their advice.
1. Schedule Important Tasks for When Your Energy Level Is Highest
While fatigue can be constant or arise without warning, some people find that they have a pattern of peaks and valleys in energy levels throughout a typical day or week.
“I usually have the most energy in the morning, so I plan my day accordingly,” Joni says. She starts her day with exercise, errands, or chores like cleaning or gardening. And as her energy levels drop later in the day, she turns to checking her email, meal-planning, or completing tasks on the computer, all of which don’t require as much physical movement.
A simple way to start: Use hour-to-hour time blocks to map out your energy levels in green (high), orange (medium), and red (low). Then, create a list of tasks and, using the same color-coded system, match up the energy level to each and assign the time that best suits it.
2. Prioritize Rest and Recharging from Fatigue
Turiya Powell, 36, a licensed clinical mental health counselor at Thriveworks, a counseling center in Cary, North Carolina, has lived with multiple sclerosis (MS) for 16 years. The MS fatigue she experiences has caused numerous difficulties for her, but the hardest part, she says, is not having enough energy to play with her 4-year-old daughter or go hiking with her husband.
Turiya says that pushing through MS fatigue simply isn’t always an option for her. Instead, she sticks with a regular sleep schedule to get eight hours of shut-eye each night, and she prioritizes taking frequent breaks throughout the day.
“I often set multiple break alarms throughout the workday to allow myself time to take a breather, step outside for some fresh air, or take a power nap,” she says. “I have found this to be very helpful because I have time to rejuvenate, even a little, to just recharge.”
3. Create Hacks and Shortcuts
Pacing yourself when doing mental and physical activities can help you avoid pushing past your “energy envelope,” according to the Centers for Disease Control and Prevention. The drawback is that going slow can make it seem impossible to get everything done. You can’t actually “make time,” but you can find some creative ways to spend a little less time on certain tasks without using up all your energy.
“The people who say ‘I don’t have the time’ are often doing things for other people,” says Shawna Bigby Davis, 47, a certified integrative nutrition health coach near Boulder, Colorado, who lives with fatigue from rheumatoid arthritis, Hashimoto’s disease, celiac disease, and Epstein-Barr virus. In this case, the fix is to delegate: Ask people in your circle to do the chores they’re fully capable of taking on, she suggests.
Shawna also recommends batching tasks—for example, using your energy one day to cook several large meals to eat throughout the week. To give herself more time for important things, Shawna limits her screen time with an app, setting the rule that she won’t use her phone before 9 a.m. or after 8:30 p.m.
She also finds it effective to break large goals into bite-size pieces so she can complete a little at a time, instead of consuming all her energy in one fell swoop.
4. Regularly Check In with Your Body
For Marie Morgan, 44, of South Weber, Utah, seemingly simple moves like lifting her arms above her head can drain her quickly. She lives with facioscapulohumeral muscular dystrophy (FSHD), a genetic disorder that causes progressive muscle degeneration primarily in her face, shoulder blades, and arms.
While Marie says she used to try to use every ounce of energy she had as quickly as possible, she now conserves her energy for faster healing.
“My husband and I keep a number monitoring system for my energy levels,” Marie says. “Before we decide to do something, we assess what number I am at.” For her, a range of 17% to 30% in her own personal numbering system is an indicator that she needs to be mindful of where she wants to allocate her energy, even if that means putting off something like a shower for later.
5. Consider a Group Fitness Class
“It may sound counterintuitive, but exercise helps me maintain my energy level and helps with managing my stress,” Joni says. To incorporate movement into her day and help beat her fatigue from psoriatic arthritis, she takes one-hour fitness classes four to five times a week that incorporate interval training using a treadmill, rower, and weights.
She says the classes’ late-cancellation fees and making workout dates with friends serve as powerful motivators to continue showing up. To get over the “mental hurdle” on days that she doesn’t want to attend, she reminds herself of how good she feels when she’s done. But she also listens to her body and takes a day off or dials down her intensity when she really needs to.
The right exercise to boost your energy depends on what you enjoy and can tackle with your condition. While vigorous sweat sessions work for some people, it can make fatigue worse for others, such as those living with ME/CFS. Keep a movement journal to see how different activities help or hurt your energy levels, recommends Gina.
If you do find exercise helps, there are numerous options out there for all skill levels. For example, you can join a neighborhood walking group, learn martial arts, or take water aerobics classes.
6. Suggest Low-Energy Quality-Time Activities
Sometimes, no amount of coping tools can stop crushing fatigue from a chronic illness. If you have to skip out on a girls’ night or find yourself struggling to keep your eyes open during a family gathering, it can be deeply isolating and upsetting.
Although Joni says it’s disheartening when she can’t play with her young daughters, she’s also found that it’s empowering to have a list of alternative activities ready to go. “When I’m feeling down and they suggest soccer, I counter with a quieter activity, like painting or board games,” she says. “As a lifelong athlete, that frustrates me beyond belief, but the time together is what really matters.”
You May Also Like:
Want to Read More?
Access all of Twill Care’s content, community, and experts for free!
Already a member? Login