Do you have "couch" days and "life" days? That’s how WebMD lupus guest expert Christine Miserandino, a patient advocate, blogger, and author of The Spoon Theory, describes how lupus fatigue rearranges her schedule.
"Sometimes, I can live my life normally with no major adjustments. But then there are the days when I am 'living life from the couch,'" she says. Although even on her so-called "normal" days, she’s probably dragging more than the average person, Miserandino says that she can function on those days. But then -- the lupus slams into her and knocks her back onto the couch.
On those days, she surrounds herself with the things she needs -- like the phone and the TV remote -- and gives herself permission to do things like watch movies with her daughter and order dinner in.
Her story of couch and life days strikes a chord with many in the WebMD lupus community, who chime in with their own tales of how lupus fatigue hits them. They all echo the refrain that they have learned to sleep when their body tells them that it needs to rest.
One woman remembers the chats she and her kids, now grown, had as they sat on the small loveseat in her bedroom on her "couch" (or "bed") days. "It is hard not to feel lazy if you were a task-oriented person pre-lupus. It seems like many of us were," she observes. "I have learned to accept if I achieve one or two goals I should be happy, and not stress over what I did not do."
She also offers a number of other tips for managing and forestalling fatigue, like letting the house get a little messier than you normally would, or using a cane when out walking so that you pace yourself and don’t walk faster than you should, and maintaining a sense of humor.
Another woman admits that there hasn’t been a day for a long time when she’s actually felt "well." She echoes the advice not to be too picky about the small details, and to forgive yourself for the things that you’re not able to do. "The main thing is to accept that it is not your fault," she says.
What tips do you have to share to get through the days when lupus fatigue hits you?