I open my mouth wide, and a deep rush of air pours forth, emitting sound as it is released. I am so tired. I just spent the day in my schools. Or I sat at my computer for a few hours working. Or I went to the gym to do a bit of cardio and strength training. Unless I am lying on my couch with a book or the remote in hand, any activity wears me out. This is a pernicious side effect of lupus.
I really don’t understand the science of fatigue or how it connects to lupus. I know my fatigue was bad that first year after diagnosis. I often felt pins and needles in my hands and feet in addition to the weariness throughout my body. I believe doctors classify chronic fatigue syndrome as a neurological disorder—and there definitely seemed to be something going on in my brain that exacerbated my exhaustion.
Before lupus—back in my early 20s—I ran around Philadelphia, a blur of nonstop activity. Most days, I woke up before the sun to spend some time reading the bible, writing in my journal and praying. For many years, I then would hit the gym for an early morning workout before I headed to my job. Or I used my lunch break to work out. That’s because my evenings were dedicated to church—bible study, midweek services, campus devotionals. It was rare for me to come home right after work and spend the evening in. Weekends were more of the same—full of fellowship opportunities.
When lupus showed up, and the fatigue followed, I could no longer keep up my hectic pace. It took a really long time (I mean 3-4 years) for me to make my peace with the ever-present exhaustion. I put so much of my self-worth in my activity level. If I wasn’t busy anymore, where would that sense of self-satisfaction derive? But my body was relentless. It demanded downtime. When I wouldn’t listen, and that happened often in those first years, my body shut down. I fell ill. Organs failed. I didn’t recover. I was hospitalized. Twice, I had to take three months of disability to recuperate from doing too much before a lupus flare ensued. Eventually, I learned I had no choice but to acquiesce to my body’s demands for rest.
It took even longer (maybe 7-8 years) for me to learn my body’s rhythms and figure out how to manage my time and energy level most effectively. I try to schedule my workouts in the mornings or early afternoons—before my energy levels off at around 3pm. Whether I am out visiting a school or working from home, I schedule an hour of REST on my calendar right around 4pm. I need that time—that space in my day—to rest my mind and body, to reset. Sometimes I watch television. Other times I read a book. Often I catch up on Facebook and Instagram. I try to do whatever interests me and doesn’t demand too much energy. When rest time is over, I am able to resume my day. I may teach an evening yoga class, meet up with friends, or attend a bible study for the women in my church. As long as I take that time to rest and reset, I am able to live a full and productive life.
Since I have less hours of productivity, I am forced to make decisions about what is most important. Self-care is always at the top of my list. I will quickly wear down my body if I don’t exercise, eat right, and get enough sleep. Relationships are also a big priority for me. I try to leave my weekends (Thursday evening through Sunday afternoon) free to spend time with friends and family. Obviously, work is also really important to me, but it always comes after my self-care and relationships. That’s one of the things I didn’t know in my 20s that I learned through my lupus diagnosis.
I was forced to take a new approach to daily living because of the fatigue that accompanies having lupus. Hopefully, you will never have a chronic illness that forces you to the sidelines and makes you rethink how you live. But it is important to think about what matters most in your life. How you spend your time is a big indicator of your priorities. And it’s okay—it is wise—to value self-care. We all have one life to live, and should do whatever we can to prolong the length and improve the quality of it.
Crystal Moore began her wellness quest in 2003 after being diagnosed with lupus. Her quest has led her to embrace yoga, faith, exercise, healthy eating, and relationships. Share her journey.