Fatigue can be a big deal when you have lupus. About 43 percent of PatientsLikeMe members with systemic lupus erythematosus (SLE) who are tracking fatigue as a symptom say that it’s “severe.” A rough day can feel like “walking through knee-deep water,” notes one member.
Here’s a roundup of energy-saving tips from a few different sources (spoiler alert: routines and planning ahead can help):
- A PatientsLikeMe member’s advice: schedule, schedule, schedule. “You can’t schedule too much with lupus because one activity can knock you out,” she says. “I learned to say no in advance to over-scheduling social engagements or things that would keep me out too late or keep me from getting enough sleep.” She also sets alarms and reminders on her phone to keep her on track, including one at 9:30 every night that says, “Time to unwind” – put away electronics, take meds and go to bed.
- Hint from a writer with lupus: manage your mornings. Heather Glantz, who has been living with lupus for more than 20 years, says it took her several years to nail down a morning routine that preserves energy for the rest of the day.
“I try to stay in bed as much as possible before I start my day, so my curling iron, mirror, brush and makeup are all in a drawer next to my bed,” she writes. She has a bench in her shower and stays seated on her bed when she gets dressed. She also avoids clothes that need ironing or have lots of buttons, zippers and buckles – every little bit of energy counts.
- More scheduling pointers from the experts at the Lupus Foundation of America:
- Balance busy times with periods of rest throughout the day, if possible.
- Prep meals in advance, whenever you have a bit more energy.
- Plan ahead for big events like the holidays – shop for gifts throughout the year.
- Establish good sleep patterns. (PatientsLikeMe bonus tip: iPhones have a new “Bedtime” feature that reminds you when it’s time to hit the hay based on how many hours of sleep you’d like to get – pretty cool.)
Is fatigue a symptom you’re living with? Make sure you’re tracking it so you can see how you’re doing over time. Do you have a routine that helps you manage fatigue? Add a comment on what works for you.
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