Lupus lifestyle rule #273: Three strikes, and you're out!

One day last month, I found myself feeling a little crummy. Not like "lupus flare" crummy, just a little off.

I woke up in the morning, feeling relatively rested. But I noticed that the glands in my neck and under my arms were swollen. Odd, I thought. They weren't swollen yesterday. I decided to keep an eye on them, as swollen glands have always been an indication of disease activity for me. Even my first flare when I was diagnosed included swollen glands. I've grappled with them ever since, even undergoing a biopsy, which you can read about here. I made a note on the pad by my bedside. "Swollen glands."

Next, I noticed some mid-morning fatigue, which was a bit more worrisome. I experience daily fatigue, but never until after 1pm, when I take my afternoon nap. This 10am "Can't keep my eyes open" stuff was way too reminiscent of my lupus flare days. I made another note. "Morning Fatigue."

And then, the kicker - I took my regular afternoon nap. A nice, long nap, and I still woke up tired. And you know post-nap fatigue is never a good sign. I made a final note: "Still tired after nap."

Seeing the evidence before me, I decided to take a moment and reflect. What was going on here? Was I stressed? Had I been sleeping poorly? Was I doing too much? So I thought. And thought some more. And then I starting pieces things together.

First thing that caught my eye as I stared at my list of symptoms was my pillfold. That's when I remembered that the pharmacy hadn't been able to fill my CellCept prescription promptly. And then I'd forgotten to pick it up the day it was ready. And then they were closed on Sunday. And then yesterday had been too crazy to fit in a trip to the pharmacy. So to date, I'd missed almost 5 days of Cellcept. Yikes. I made another column on my paper, and wrote: "Missed medication."

Next, I remembered that my nap from the day before hadn't been sufficient (because, as mentioned, yesterday had been crazy.) Guess I was paying for my choice to skimp on rest. I'd hopefully make up for it during my nap today, but I made another note: "Nap too short."

Lastly, I thought about what I'd been eating over the last few days. And it hadn't been much. With the craziness of the previous day, (and maybe even a reduced appetite because of the symptoms), I'd skipped breakfast, and barely had lunch. Today hadn't been much better. With the mid-morning fatigue, I'd just wanted to sip hot tea. My final note: "Too little food."

So things were beginning to add up:

I was tired, under-medicated, and hungry.

A perfect storm to create the symptoms I was experiencing.

Had it just been a less-than-stellar nap, I probably could have bounced back after a good night's rest and a solid nap. I bet even a shortened nap, combined with the lack of fuel (read: food) probably could have gone unnoticed. But add in the third factor of missed medication, and I was on the edge of flaredom.

Armed with this information - I started undoing my mistakes. I hightailed it to the pharmacy, taking a bottle of water with me so that I could take a dose of Cellcept the moment I picked up the prescription. Next, I made plans to get in a well-balanced dinner. I wasn't up for meal prep, so we made plans at the restaurant around the corner. Lastly, I checked my schedule for the next couple of days, making sure that my nap wouldn't be compromised. I had to rearrange some work projects, but it was worth it. I emerged flare-free, and my glands returned to normal (except for one, which will be discussed at my upcoming appointment.) Had I not taken stock of my symptoms, or made immediate accommodations to make sure I was putting my health first, things might not have turned out so rosey. I'm so glad they did!

Need to track your own symptoms to get a handle on your disease activity? Try out a version of my chronic control spreadsheet. It did wonders for me when I was first diagnosed. You can read about it here and here.


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