State of the sleep, April 28

An animation of water moving slowly behind a grassy shore and a large boulder. Deception Pass, Washington state.
Image description: An animation of water moving slowly behind a grassy shore and a large boulder. Deception Pass, Washington state.

When I developed sleep apnea suddenly in 2020 during a series of major dental work, I had no idea that getting diagnosis and treatment would become a many-months-long saga. I’m returning to, and sharing, some updates I wrote for friends and family along the way to help break down the stigma around sleep apnea and CPAP devices.

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State of the sleep: Still about 90% zombied, though it’s a bit better than the worst I’ve been. Still not particularly functional.

Small tasks are big wins right now, things like “rearranging the (high-humidity houseplant) aquarium” or “carrying bare-root roses around the house and plopping them in the holes Raymond Ashline dug” or “doing the dishes.”

But progress is happening, albeit slowly. Every day I’m changing something at night and watching the results. A few nights ago I started using a nasal pillow mask, that just goes over the nose, courtesy of some old spares R. had kicking around, and that was pretty great for a night before devolving into the same old mask-leak issue I was having with the full-face mask.

He rummaged around this morning and actually came up with the other two sizes of the same mask that came with his maintenance parts, so tonight I’ll try a smaller size and see how that goes.

I’m so impatient with this process, partly because I want to sleeeeeeeep, partly because it sucks having my life on hold and partly because every time I have to talk to The World’s Most Useless Employee* it emphasizes how terrible our medical system is. But it’s just a necessary pain at this point.

I am really enjoying the metrics available through the CPAP, though. Being able to see each morning how I “performed” the previous night is really helping me validate my own experience in testing out the various components.

*TWMUE — who works for Apria, the medical supply company who’s responsible for my equipment — called me yesterday to check in. I was mildly impressed that she’d remembered to do it.I gave her an update, emphasizing that I hadn’t had any mental problems adjusting to the mask they sent (no claustrophobia, nothing like that) and that I was confident I was using it correctly, but it had rubbed giant sores on my face and wouldn’t stop leaking, so I was trying a nasal pillow from my husband’s spares.

TWMUE was very confused that the Magical Equipment Quiz (read: almost useless, just like TWMUP) she’d made me take didn’t give me the bestest most perfect mask for me on the first try.

She wants me to have a telehealth appointment with a respiratory therapist, which I think is required for me to “officially” change masks anyway, so that’s fine by me.

I wanted to reach through the phone and shake her, though, when she brightly told me that said therapist could help me “wear your mask correctly” and “work through the mental issues you have with wearing it.”

stomps around room, throws pillow

Hi there! I'm Lindley. I create artwork that celebrates the unique beauty of bodies that fall outside conventional "beauty" standards at Body Liberation Photography. I'm also the creator of Body Liberation Stock and the Body Love Shop, a curated central resource for body-friendly artwork and products. Find all my work here at bodyliberationphotos.com.