My Lupus Fatigue Is Worse in the Mornings

Ask most lupus patients and they’ll tell you that their symptoms are worse at a particular time of day. Many patients feel increased fatigue or joint pain at the end of the day after they’ve been awake for many hours. Others feel a dip in their energy in the middle of the day and might need a nap to recover. Some lupus patients, like me, feel sickest in the morning when they first wake up.

“My day happens in reverse,” I sometimes explain the fatigue to my friends.

Mornings with lupus

When I wake up in the morning I feel exhausted and nauseous. Even though I’ve just slept ten or more hours, I feel as if I’ve been awake for days. I usually have to lie in bed scrolling mindlessly on my phone for fifteen minutes or more before I manage to drag myself out of bed. Half of my morning routine is spent just trying to wake up.

As the day goes on, my energy level tends to improve. By 3pm, I’m usually still tired, but not exhausted. I experience the least amount of fatigue in the evening. I often call 7pm the “magic hour.” By this time, my fatigue has mostly disappeared.

Sleep and fatigue

During my first years with lupus, I’d set my morning alarm for 8am or 9am. I thought that if I went to bed early and got plenty of sleep, I shouldn’t have a problem waking up at the same time I did before I became sick with lupus. It took an embarrassingly long time and hundreds of unbearable mornings for me to realize that it didn’t matter how many hours I slept or how much coffee I drink each morning. My disease simply tends to be most severe in the mornings, and the best way to stay healthy is to sleep as late as I need to.

Hustle culture

Benjamin Franklin once famously said that “early to bed, early to rise makes a man healthy, wealthy, and wise.” Our culture, at least in America, is hyper-focused on being productive. Scroll through your friends’ Facebook posts and Instagram accounts and you’ll see announcements about new jobs, work successes, or promotions nearly as much as you see pictures of their families or of vacations they’ve gone on.

Too often, we define ourselves by our job titles or by what we are able to accomplish in a day. It wasn’t until I became chronically ill that I realized how much I had blindly accepted American hustle culture. Even though I felt terrible in the mornings and waking up early was damaging my health, I still forced myself to get out of bed early in hopes that I’d check off every item on my to-do list that day.

The worm who wakes up late

Accepting that I wasn’t a morning person and deciding to allow myself to sleep as late as I need to completely changed my life with lupus. Now, I roll out of bed at 11am or noon feeling tired, but far less exhausted then I would if I were waking up several hours earlier. I have less flares and am healthier overall because I sleep in. While fitting in errands before I begin work can be tricky, I find that I’m healthier and happier, as well as more productive, when I give my body the rest it needs.

While it’s true that the early bird gets the worm, it’s also true that the worm who wakes up late stays alive.