Day 13: Healthy Deed - Don't Skimp on Sleep (aka Dealing with Lupus Fatigue Gracefully)

It's no secret that I've had debilitating, disruptive fatigue since I was first diagnosed with lupus. How about you?

It's one of the most common symptoms of the disease, as well one of the most difficult to manage and justify. Everyone thinks they've experienced fatigue like ours...but those with lupus know that lupus fatigue is unlike any other. Crushing fatigue, where you can't speak, see, or think clearly. Overwhelming fatigue, where you have trouble putting one foot in front of the other because your body is shutting down, like a battery going into sleep mode.

(As an aside - I just googled "sleep mode", and here's what came up:

In sleep mode your computer's processor shuts down, and your RAM is the only "live" component (hence the minimal battery usage). Of course, nothing can go on if your processor is turned off! 

This is me to a "T" when lupus fatigue hits. My processor turns off - and my body simply won't function!!!!)

As you've read before here and here, the way I combat my fatigue is with a daily afternoon nap. It's non-negotiable, and I plan everything around it: kids' sporting events, conference calls, play dates, speaking engagements, errands, etc. No day starts without me knowing when and how I'm going to get in a nap. I've come to expect it, and most days, I appreciate it. How great that, by taking a little 90 min to 2 hour nap everyday, I can make it from 6:30am to 10:30pm, as a fully functioning, normal, healthy woman? It's a pretty good deal, and a far cry from the decrepit state I used to find myself in at the end of a day, sans nap. Without a mid day rest, by 5pm, I used to be cashed out...with a slow deterioration starting right after lunch. 

So a few weeks back, I settled in for my daily nap around 12:30pm. I set my alarm for 2 hours - my standard nap time. But around 1:30pm, I woke up. But I also misread the clock, and thought it said 2:30. I turned off my alarm (still thinking it was 2:30), brushed my teeth, primped, and walked down the hall to go pick up the kids from school. My husband, who works from home, called out from his office, "What are you doing up so early?" I called back that it was time for me to get the kids, and that's when I noticed the time. Ohhhhhhh. It was only 1:30...not 2:30pm. 

Ah ha. 

So what's a lupus warrior to do? Sure, I felt rested, but I wasn't rejuvenated. I certainly didn't have a "raring to go" kind of energy. I considered my options, and yes, I thought of my overflowing to-do list. But I also thought of my healthy deed of the day...and decided it was time for one. 

I turned right back around, went into my bedroom, took off my shoes, reset my alarm, got back into bed, put on my eye mask, and went back to sleep. I took awhile to settle back down (as I'd just psyched myself up for the busy after-school routine to begin), but I definitely slept. At 2:30pm, my alarm went off, and I awoke refreshed and ready to go. Like, really ready. 

It was the best decision I made all day. Healthy deed to the rescue! 


Anonymous said…
I’m going for further testing, seems likely I have lupus. My daughter has it. The “dead battery” thing is real. There’s nothing when it hits. I couldn’t figure out what was wrong with me. I’d been severely anemic but that was under control. Stunning but determined to find out why I feel the way I do. Thanks for sharing that. Naps became a daily routine before the initial test. Next appointment is w/rheumatologist.
Sara Gorman said…
Anonymous -- Best of luck as you await a diagnosis, and thanks for understanding my battery analogy. I am often anemic, as well, and that low-energy feeling is terrible! Hang in there - thanks for sharing.

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