The self-care that isn’t ‘Instagram-worthy’ in my life with lupus

With a chronic illness, self-care is vastly different than what social media shows

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by Kristiana Page |

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When I hear the term “self-care,” I envision sitting in a bubble bath with candles all around me, my hair tied up in a lopsided, messy bun, while lo-fi beats play in the background. It’s a glorious image, but entirely fictional.

Firstly, because I hate baths. There’s something about sitting in a scalding hot bath that makes me feel claustrophobic. Secondly, the type of self-care that I need most is much less aesthetically pleasing and much more … boring.

In our world of constant stimulation, instant gratification, and go, go, go, the push toward self-care is important and necessary. But in my life with lupus, self-care often is neither pretty nor interesting. There are no afternoons sipping wine with a face mask or reading books in a sun nook, basking in the late afternoon’s rays.

For me, self-care often isn’t optional and usually consists of resting, napping, or most boring of all, working on my patience.

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Today is a perfect example. After spending the afternoon celebrating Greek Easter with my partner Felix’s family, I came home full of food and exhausted. Walking myself up the stairs to bed, I fell asleep to the sound of “Seinfeld” on TV. Waking from my kip a couple hours later, I felt no relief from my fatigue.

This week hasn’t been a big one for me. In fact, it’s been tame. I’ve had a mild cold, which has kept me off the mat and painfully watching my Brazilian jiu-jitsu lessons from the sidelines. Due to a combination of the long Easter weekend and being sick, I haven’t exercised for over a week. The fact that I don’t have any real reason to be extra tired only makes the situation that much more annoying.

I know it’s silly, but I prefer to be able to justify my fatigue. It’s not that I think I need to “earn” a nap, but that my logical brain likes to be able to explain why I feel the way I do. But in the last seven years, there has been many a time when I couldn’t explain away my lethargy. And there’ll be an endless number yet to come.

In the same way that introverts have a “social battery” that runs out after too much interaction, I also have a battery. But it’s not selective about the situation. It doesn’t discriminate — it just runs out.

The duration of my “charge” varies from day to day. Sometimes I can guess what I have in the tank, and sometimes I can feel it. Other times I have no warning whatsoever.

There are days when I’m halfway through an afternoon, chipping along and feeling good, when I take a seat for just a moment and it all hits me. In a split second, I’ve gone from happy and bubbly to visibly drained. It’s like a dark little cloud has come to hover over my head, and the world isn’t quite so colorful anymore. Suddenly, I’m planning my step-by-step route back to bed, counting down the minutes and seconds until I can crawl back under the covers again.

Self-care isn’t all Instagram-worthy spa days and dreamy cottage getaways. It’s taking a day off from your favorite hobby, especially when you don’t want to. It’s saying no to a day with friends because you know that rest is what you need to be your best you for the rest of the week.

In pop culture, self-care is sold as a luxury. In my life, self-care is a necessity. If I don’t listen to my body, rest when I get the chance, and nap when the opportunity presents itself, I pay for it.

For me, self-care is a Sunday in bed snoozing on and off while Netflix plays in the background. Where did I want to be? In the city, exploring the streets. I’d rather be taking ridiculous selfies with Felix, and sampling as much bubble tea and dumplings as my stomach will allow. But I spend the day in bed resting and sleeping, giving up today so I can hopefully, maybe, reap the benefits tomorrow.

For the most part, I take it with a little sigh and a smile, but sometimes it hurts. It hurts to think about how much time I’ve devoted to resting when I often don’t feel rested at all. And this is where I practice my patience. Life isn’t fair. I’ve taught myself that it’s OK to be angry about it but to keep remembering I’m not to blame.

The reality is that I’m not missing out on anything. A time will come for me to experience everything I want, but it might not be today. Today might be for naps and resting, but the bets are still off for tomorrow!

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.


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