Tracking my sleep, stress, and daily habits is helping me take back control

I’ve learned a lot in my 25 years of living with lupus, but one lesson my body insists on teaching me over and over again is that sleep is not optional. Apparently, my immune system has very strong opinions about bedtime.

One or two nights of terrible sleep is sometimes all it takes for my symptoms to go from manageable to an absolute dumpster fire. I’m talking about increased pain, crushing fatigue, fevers, and that familiar feeling that my body has decided to stage a full-blown rebellion. Even after all of this time, it still surprises me that missing a solid night of sleep can have this much impact.

While I’ve always known that sleep matters, I’ve recently become a little obsessed with understanding just how much it matters, thanks to a wearable/trackable device I treated myself to called the Oura Ring. (Other smart rings are on the market, I just happened to get this one.)

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I’ve always been a huge proponent of tracking lupus symptoms, habits, and patterns. If you’ve followed me on LupusChick or read my columns on this website, you’ll know that I’m a big believer in journaling and finding your specific patterns. But today’s wearable technology? It’s a whole different ballgame than when I was diagnosed in 2001.

With my Oura Ring and guidance of my functional medicine doctor, I’ve been experimenting with ways to improve my sleep, particularly by getting enough restorative sleep to help my body recover from the physical activity and stress of everyday life.

My ring tracks sleep duration, nighttime awakenings, heart rate variability (HRV), and physiological stress indicators. And the insights have been fascinating. Did I eat too late? Push myself too hard? Spend the afternoon stressed beyond belief? Take medication later than usual? Stay up watching one more episode when I absolutely knew better?

The data often helps me connect the dots.

And while HRV isn’t a crystal ball (wouldn’t that be nice?), tracking changes over time gives me another window into how my body is responding to life.

Last week, something wonderful happened. I had five consecutive nights of incredible sleep. When I say incredible, I mean nine-plus hours a night. I went to bed around the same time (11 p.m.), managed my daytime stress with some breathing sequence breaks and a little reading to break up the day, and gave my body a consistent opportunity to recover.

And friends, I felt amazing. Not cured. Not suddenly a woman without lupus, but noticeably better.

Then came the plot twist. A few rough days of fever and pain disrupted my sleep, and my body spiraled. The fatigue intensified, and suddenly my entire body was at a Level 10 of pain, and I could barely manage to get through the day.

It was a frustrating reminder that sleep and lupus can become a vicious cycle. Symptoms interrupt sleep, and poor sleep can make symptoms feel even worse. And this isn’t something we are imagining; research increasingly supports the connection between sleep, inflammation, and immune function.

A 2015 meta-analysis in the journal Biological Psychiatry found that sleep disturbances were associated with higher levels of inflammatory markers, including C-reactive protein and interleukin-6. And the U.S. Centers for Disease Control and Prevention recommends that most adults get at least seven hours of sleep per night. For those of us managing chronic illness, sleep quality and consistency deserve attention, too.

Of course, sleep isn’t a cure for lupus. But it is one piece of the puzzle we shouldn’t underestimate.

A little more control

Working with my functional medicine doctor, I’ve been exploring warm baths before bedtime, magnesium, supplements, various deep-sleep gummies, consistent sleep schedules, and better stress management. We try each new item for a week and see what the outcome is. When it comes to supplements, we take a look at all of the medications I’m taking so we aren’t combining herbs and drugs that don’t mix. This is why it is so important to not take random advice online but work with your healthcare team to truly come up with a routine that is safe and works for your body. 

I’m not claiming I’ve perfected anything. Some nights are wonderful. On others, lupus apparently has plans that don’t involve consulting me. But here’s what excites me: We live in a world where information overload is practically a second job. Yet this is information I actually want. My wearable doesn’t diagnose a flare or tell me exactly why I’m feeling lousy, but it does help me recognize patterns and make more informed decisions. And I’m seeing a huge difference in my daily life.

Living with lupus will probably always involve some ebb and flow. There will be good days, terrible nights, unexpected symptoms, and plans that get tossed out the window. But every time I prioritize my sleep, recognize a warning sign, or make a small adjustment that helps me feel better, I’m reclaiming something.

I get a little more control and a lot more confidence. And when you live with a disease that constantly tries to take those things away, that’s no small victory.

Now, if you’ll excuse me, I have a very important appointment with my pillow.

Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to lupus.