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How the Fluctuating Nature of My Autoimmune Disease Taught Me to Be Grateful

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I’m sure you’ve heard the cliché a million times: “live each day to the fullest.”

The concept is pretty self-explanatory, but I didn’t truly grasp it until November 2015 when I was diagnosed with an autoimmune disease called Sjogren’s syndrome. One of the hallmarks of autoimmune diseases is that they fluctuate – sometimes you feel great (and are essentially “in remission”) and sometimes they flare up and your symptoms worsen for a time. For me, flares are synonymous with debilitating fatigue.

I’m not talking about fatigue like “I didn’t quite get enough sleep last night.” I’m talking about soul-crushing, feel-it-in-your-bones fatigue. You know that type of fatigue you feel when you have the flu, and the mere thought of getting up off the couch tires you out? It’s a little like that. It’s the type of fatigue that isn’t cured by a good night’s sleep. It’s the type where you wake up feeling tired. It’s the type where you can’t plan more than one event in a day, and sometimes even one is too much.

So how does all of this fatigue inspire gratitude in me? Because the whole point of autoimmune flares is that there are some times when your symptoms overtake your entire being, and there are others where they are lessened enough for you to live more how you want to. It’s a little like some other clichés: “you can’t have light without darkness” or “there’s no rainbow without a little rain.” You can’t have great days without also having autoimmune flares. (That one isn’t nearly as catchy).

See, I do have really good days. Days where I’m able to whip off the covers with a smile on my face instead of struggling to get out of bed. Days where I can get some homework done, go out to lunch, do yoga and still get through work. Days where I feel motivated and inspired and, well, good. These days are not consistent, nor are they predictable. But when they do come around, they’re incredible!

There’s this feeling I get sometimes, perhaps some would call it euphoria or bliss, Aristotle may label it eudaimonia, but the best way I know how to describe is “on top of the world.” It’s that feeling I get on the first warm spring day when I can roll down the windows of my car and crank up the country music as I drive, or when I’m sitting around a campfire with my friends and we’re eating and laughing and I look around at their faces and say to myself, “I want to remember the way I feel right now, in this very moment.” It’s a feeling I’ve always wished I could bottle up and save for a rainy (or tired) day.

That feeling – that’s what I live for. And that’s what taught me to be grateful. Autoimmune flares suck, but when you come out of one and you have a day where you feel on top of the world, high on life, if you will, you realize that you have to treasure those days. Autoimmune flares, like any of life’s obstacles, are unpredictable. So I’ve learned to live my better days to the fullest, because I never know when the next one will come along.

This story originally appeared on Balanced & Blissful.

Originally published: November 11, 2018
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