Choosing to make each day a win, despite lupus fatigue

My sleeping pattern is off at the moment, and I’m exhausted. As someone who already struggles to feel rested due to lupus fatigue, it feels a bit like the sky is falling. In the long run, I’ll probably look back at today and realize it wasn’t that bad. But right here and now, everything feels difficult, unachievable, and chaotic.

But no matter how snowed under I feel, the world will keep turning, and the sun will rise and set like it always does. Life won’t pause and let me off for a break.

I’ve learned that days like today aren’t about keeping up with everyone else, but simply putting one foot in front of the other. If we look at it in terms of university grades, today is not an 85% and above, conquer-the-world, high-distinction kind of day. Today is a pass. It’s a 50%, do-your-best-to-make-it-work kind of day. And sometimes, that’s more than enough.

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June 30, 2023 by Kristiana Page

After my lupus diagnosis, I learned to take things one day at a time

Learning to let some days go

I woke up this morning knowing I’d barely slept and wishing I had another eight hours for a do-over. But this isn’t a video game. I can’t just opt out, hit restart, and begin anew whenever I feel like it. I need to look at my day, prioritize my health and well-being, and whittle down my to-do list as best I can.

I know I won’t make it through my entire list today; I couldn’t even make it to work. When I get overtired, I’m overcome by migraines that put orbs in my vision. While the symptom is annoying, it’s also dangerous and prevents me from driving anywhere.

Heck, I probably won’t even make it through half my list — but that’s OK. Not every day is a winner, and some feel more like losses. But after seven and a half years of dealing with lupus fatigue, I’m finally at peace with letting some days go.

After all, there isn’t a prize for pushing myself past my limit, but a consequence. My energy is a finite resource. Once today’s stockpile is depleted, I’m stealing from tomorrow. It’s not a matter of getting caught. I’m the victim, thief, and punisher all rolled into one. There is no hiding.

The pattern has always been the same. There’s foolish ambition as I overuse my energy and denial that it will catch up with me, followed by recognition and regret upon waking under the weight of my fatigue, and finally acceptance as I bear my punishment.

Reframing my perspective

As I continue to edge closer to one decade of living with lupus, I’m just not willing to keep paying that price. And if for some reason I have to pay, there’s no point in paying twice. I don’t need to struggle with excess fatigue and beat myself up about everything I “should have” been able to achieve that day.

It doesn’t matter whether I dealt today’s cards to myself or they were dished out by another dealer. I still have to play the best game I can and do it with grace.

Over the years, I’ve written a lot of days off as losses before they even began. I didn’t wait to see how things would go or try to find little wins. I woke up consumed by my lupus fatigue and declared how the day would turn out before it had really started. In hindsight, I wonder how many days might’ve been salvageable if I had a better outlook.

Today might not go how I’d hoped, but it’ll still be a good day. I don’t know how exactly, just that I’m going to make it happen. Your wins don’t need to be evident to anyone besides you.

For me, it’s been as simple as finishing this column. And would you look at that — today’s not a write-off after all.

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.