How I Changed my Schedule to Accommodate Lupus Fatigue

With a lupus diagnosis comes life changes. Sometimes these changes come in the form of pills that we have to take for the rest of our lives. For others, a lupus diagnosis might require us to rest and budget our energy in ways we hadn't before. Still, other lupus patients might find that they need to pivot to a less physically demanding career. For me, the most life-altering part of getting diagnosed with lupus has been the changes I've had to make to my daily schedule.

Keeping a schedule helps me

As a type-A, goal-oriented person, sticking to a schedule helps me feel happy and productive. But when lupus entered my life, it had its own idea of how my daily routine should go. For the first few years of my illness, I rebelled against the schedule my body imposed on me. I drank extra coffee instead of resting when I needed to.

Productivity with lupus

I forced myself out of bed each morning, pushing past my morning sickness and exhaustion in the hopes of tackling my to-do list. Partly because I live in a country in which productivity is prioritized over health and partly because I'm simply stubborn, it took me a long time to change my mindset about what productivity truly means. Twelve years after my diagnosis, I've learned that productivity isn't about crossing items off a list. It's taking care of my body and brain so that I can feel rested and empowered to focus on my priorities. It's staying as healthy as I can so that I can make a positive impact on the world around me.

My schedule with lupus

Here is what a typical day with lupus looks like for me:

11 am – This is when my body naturally wants to wake up. However, if I'm in a flare, I might wake up as late as 1 pm. I used to force myself to wake up at 9 am, which only resulted in me sitting on my couch exhausted for an hour or more. When I wake up, I brew some coffee and cook oatmeal, then walk my dogs and check my email. "Skipping" mornings altogether has improved my health as much as medication has.

1 pm – Around this time, I try to get some light exercise in. I go to a Pilates studio in my neighborhood at least once a week. On days I don't do Pilates, I do light weight-lifting for 30 minutes.

2:30 pm – It's lunchtime! To save time and energy, I cook large batches of food once a month, then freeze small portions. This keeps me eating healthy even when I'm tired or busy.

3 pm – This is when I typically start work for the day. I teach violin and viola to students ages 3 to 93. I love my job and my students, and I'm looking forward to the day I can see them again in person and not over Zoom.

9 pm – I eat dinner and watch YouTube. Lately, my YouTube obsession has been watching elite gymnasts prepare for the Olympics, but I also like watching personal finance or writing vlogs.

10 pm – I write a little (usually about lupus) or give myself a break and chat with a friend on the phone.

11 pm – I get ready for bed. Because lupus causes insomnia for me, I try to avoid computer screens. Instead, I unwind by reading. I'm currently reading Aja Gabel's "The Ensemble," a novel about a string quartet.

My schedule keeps me healthy

Years after I'd adjusted to my new life schedule, I visited my best friend across the country. It amazed me that she and her husband woke up many hours before I did, even after staying up later. The way they moved from activity to activity without needing to rest in between made me feel like I was watching a colony of bees. Years ago, I would have felt inadequate. Now, I've accepted that my life is different. Maybe my schedule isn't "normal," but it keeps me healthy and happy.