No. 42: Trash chair thoughts

Everything hurts.

The pain—the one that kicked off a nearly two-year journey resulting in my hip surgery three months ago—is back with a vengeance. But, if I’m being completely honest, which I rarely have been, with myself and others regarding mental and physical pain, it never really went away.

I was hopeful that in fixing my hip, I would be able to retrain the muscles around it and hopefully get relief from the literal pain in my ass. I was told that it might take a while, that this is normal, that I just have to be patient. But nothing seems to be working.

So I’m still waiting; I’m waiting for something helpful to come across my TikTok fyp or waiting for my 10,000th google search or reddit rabbit hole to provide me with a case study that’s close to mine; I’m waiting for a doctor or friend or stranger to believe me and finally suggest the supplement or stretch or shaman that will cure me.

I read testimonials from people who seem to be suffering similarly, people who have been in chronic pain for ten, twenty, thirty years. I make exercise programs and meal plans and buy pillows for every possible position I could ever be in. Walking helps my mental health, but exacerbates my hip and glute issues; running would be better for the former and even worse for the latter.

I rest, I rinse, I repeat, I repent.
Do I need more exercise or an exorcism?

Sitting for more than a few minutes is excruciating. I have a standing desk, but standing too long hurts everything else. I’ve been eating standing up in my kitchen, and laying on my stomach on the floor while I scroll through every corner of the internet hoping to uncover an explanation for my unexplained pain.

I have diagnosed myself with hypermobile ehlers danlos syndrome, PMDD, histamine intolerance, gluten sensitivity, IBS, perimenopause and a handful of other issues that cause symptoms similar to mine. I never feel more womanly than I do when I’m juggling so many overlapping symptoms and making charts trying to connect the dots like I’m hunting a serial killer. One thing causes another means something else and I’m desperate for a diagnosis, for a definitive direction so I can stop stumbling around in the dark, defeated and depleted.

Maybe I’m just depressed.
Maybe I’m just a silly girl!

Everything seems to be connected and it’s both comforting and crazy-making to realize that so many people suffer from so much. Whether in silence or in front of strangers through a screen, it’s a shame that we each have to learn the world’s lessons over and over and over again. With so many of us, you’d think we’d be better at pooling our limited resources.

I cringe when I think about how unseriously I have always taken pain, whether it was something I was feeling personally or hearing about secondhand. Somewhere along the way, I learned not to trust women, including myself. We’re needy or whiny or lazy or attention-seeking. We just need to lose weight, drink more water, and take more steps. We should believe what we’re told but not what we think, taught to question ourselves first and others’ motives along the way. How can I possibly explain to you how it feels to be me?

There’s a pain, right there.
No, right here. Over there. Underneath it all.
Why can’t you feel it?

I am lucky that I work from home, that I can work from my bed and have clients that don’t mind my zoom background which includes five mannequin butts and a full body medical model of the inner-workings of a fiberglass person (minus the head).

I was never taught what to do when nothing seemed to be working, when it hurts to sit still and hurts in a different way to keep moving at all costs. No one warns you about the costs: mentally and materially and monetarily, I am exhausted.

The only time I truly do not feel pain is when I’m in a boiling hot bath loaded with epsom salts, smoking a joint, and listening to music at a very loud volume. I’m lucky to be able to do all of these things in my bathroom, and I hope the exhaust fan blows directly into my upstairs neighbor’s (I doubt it, he’s a republican Senator, he probably wouldn’t be as bad if he got high every night, so it’s basically my patriotic duty 😮‍💨).

Sometimes I wonder how many of those elements I could remove and still feel the same bliss. How do I know if the epsom salts are working? I got lavender-scented ones, which are nice to smell, at least. The music feels essential, but maybe silence would be just as soothing. I am willing to try anything in the pursuit of pain relief.

I am such an impatient patient that I worry I am not making the best decisions. Did I really need that hip surgery? My operative hip does feel better in many ways: it feels more solid, and seems to be getting stronger, even if at a glacial pace.

My PT has been prompting me lately to remember back when I couldn’t walk. See how far I’ve come. I can’t go back. My surgeon thinks I may need to get my right hip labrum fixed as well, but now I’m wary of jumping to conclusions and more surgeries.

Maybe I have hip issues and some mysterious glute pain. Maybe I have HEDS and ADHD and MS and long-COVID and food allergies or maybe it’s all in my head. Clarity still feels frustratingly out of reach. What if I never find the answers and the questions keep coming?

This isn’t one of those romantic wasting diseases that they give hot women in period pieces. It’s not sexy to watch me struggle to put on one a sock. Or to find me contorted into one of countless positions that seems to alleviate my pain for even a second. Some positions are better than others, but eventually the pain finds me again. I’m tired of trying to figure out what this pain is telling me, tired of trying to embrace the experience as a learning exercise. What an excellent growth opportunity.

I’m so tired of trying to get better.
I just want to be ok.