You know what nobody really tells you about chronic pain? It’s exhausting, and I’m not just talking about the pain itself. You learn where the heating pad lives, which chair in the apartment is the “good chair,” and that your body has absolutely no respect for whatever plans you’ve made for the day.

The hardest part, though, isn’t always the pain. It’s the fact that life doesn’t stop because your back decided to stage a protest. The dishes, the laundry, the groceries, and Sir Kit Kat’s snack schedule all keep moving right along. And somehow, even if you’ve barely moved all day, the apartment still manages to look like a tiny tornado wandered through. I’m convinced that’s one of adulthood’s biggest scams.

When this latest flare started, I figured it would be the usual story. Take it easy for a couple of days, be a little careful, and life would get back to normal. About two weeks in, though, when there wasn’t even the tiniest hint of relief, I had one of those quiet conversations with myself where you just sigh and think, “Well… this one’s going to hang around for a while.”

The funny thing is that after dealing with chronic pain for years, that realization isn’t dramatic anymore. It’s not tears and sad movie music. It’s more like looking at your own body and saying, “Seriously? We’re doing this again?”

People ask me what the hardest part is, and I never really know how to answer. Is it the pain? Yes… and no. It’s the frustration. It’s having the energy to do something but not having a body that’s willing to cooperate. It’s wanting to cook, clean, go shopping, or just get up and do whatever you feel like doing without having to negotiate every movement first.

And then there are the noises.

I don’t know where they come from, but apparently standing up now requires the sound effects of a wounded rhinoceros. Honestly, some days I hear myself trying to get out of a chair and think, “If anyone walked by my apartment right now, they’d be calling Animal Control.” I know you just pictured it… and if you’re dealing with chronic pain too, you’ve probably made a few of those noises yourself. 😹

What I miss most is the freedom of not having to think about everything. I miss being able to wake up and decide to cook or clean or go for a little adventure without wondering if I’ll pay for it later. I haven’t really lost my independence. It just looks different right now. I can still do the things I love, I just have to do them differently.

That’s where pacing comes in, and let me tell you, Hurricane Shelly is not very good at pacing. The minute I feel even a little better, I decide it’s obviously the perfect time to do three weeks’ worth of meal prep, laundry, cleaning, reorganizing, and maybe a little baking while I’m at it. Future Shelly hates these decisions. Nurse Mau would probably knock me upside the head if she saw me. Because I know exactly what happens. I overdo it, and then I spend the next week paying for one afternoon of pretending I’m twenty-five again.

Slowing down has never come naturally to me, and neither has asking for help. That’s still a battle I fight in my own head. I’ll tell myself I’ve got this. I’ll push a little harder. Then a little harder again. And when I finally can’t do one more thing, that’s when I’ll break down and ask. It still stings, but I’ve also learned that the people who love me don’t see me as a burden. They just see someone they care about who needs a hand.

I’ve been lucky that way. My sisters have been there through it all. My visit with Maureen filled my heart more than I can explain. Sir Kit Kat, while being completely useless when it comes to actual work, is an excellent emotional support supervisor. He won’t fold laundry, but he’ll happily nap beside me and judge my snack choices. That’s got to count for something.

The biggest thing chronic pain has stolen from me over the years isn’t movement. It’s joy. For a long time I thought if I was hurting, life had to be put on hold until I felt better. The problem is that sometimes “better” doesn’t show up the way you hope it will. If I had waited for a perfect, pain-free day before I let myself be happy, I would have missed out on a lot of living.

Somewhere along the way, I’ve learned that pain and joy can exist together. Not because it’s easy, and definitely not because it’s fair, but because life keeps offering little moments if we’re willing to let them in. Sometimes it’s sitting on the balcony with a coffee. Sometimes it’s finally getting back into the kitchen after weeks of barely being able to stand there. Sometimes it’s laughing with a friend until your cheeks hurt. And sometimes it’s catching yourself humming a silly little song you used to sing to your kids years ago and realizing that, for a few minutes, you weren’t thinking about the pain at all.

You were just… happy.

I don’t know if I’ll ever stop wishing my body worked the way I want it to. I don’t know if I’ll ever stop getting frustrated when pain rewrites my plans. But I do know this. My body might say no some days, but life doesn’t have to. It might ask me to slow down. It might ask me to do things differently. It might force me to ask for help when I’d rather be stubborn. But there is still a life here to live, and there is still joy to be found.

💛

Well, my friend, that’s what’s been on my heart lately.

If there’s one thing I hope you take away from today’s chat, it’s that chronic pain doesn’t get to decide the whole story. It can change the pace. It can change the plans. It can even steal a few days from us now and then. But it doesn’t have to steal every bit of joy we have left.

Some days your biggest victory might be making a meal, sitting outside with a coffee, or simply getting through the day with a little hope left in your heart. Those victories count. Celebrate them.

Thank you for pulling up a chair, sharing a coffee, and spending a few minutes with me today.

Now it’s your turn.

What’s one thing you wish people understood about living with chronic pain… or what’s one small victory you’ve celebrated lately that other people might not even notice?

And if someone came to mind while you were reading this, feel free to share it with them too.

Until next time, keep showing up, keep growing, and keep finding those little moments that make you smile.

We’re figuring this out one day at a time… together.

— Shelly 💛