State of the sleep, May 11

Water washes around big brown sea stack boulders.
Water washes around big brown sea stack boulders.
Image description: Water washes around big brown sea stack boulders.

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.

โ—‡โ”€โ—‡โ”€โ”€ยซ ยปโ”€โ”€โ—‡โ”€โ—‡

State of the sleep: Slowly improving. So, so slowly.

When I’ve talked to people about this condition, it’s been interesting how dismissive many folks have been. After all, it’s just being tired, right? Everyone’s tired. Suck it up.Now that the worst is behind me, it’s increasingly clear how bad “the worst” was. Long-term sleep deprivation is no joke and not something to dismiss.

The worst part of the worst wasn’t the physical fatigue. It wasn’t the back and arm pain from sleeping in strange positions. It wasn’t the brain fog, confusion, grogginess or forgetfulness.It was my complete inability to support abstract thought.

For example: I’ve been kicking around the idea of us taking a nice long road trip later this year. Especially when I wasn’t able to do much else, it seemed really appealing to think about what the trip might look like, where we’d go, what we’d do….And I just…couldn’t do it. I could think as far as “a road trip would be nice,” but I couldn’t envision any details or even the broad outlines. It just stopped there.

Three days later, I’d remember that I’d tried to think about a road trip, and repeat the process.

If you’ve never been in that state — and I hope you never have been and never will be — it’s frustrating and a little frightening. It would take me three days of intention, plus 90 minutes of struggle, to answer a simple one-paragraph email.It wasn’t just that I couldn’t do client work, but I literally couldn’t think about client work. I’m not better, but I can see “better” from here, and I’m certainly better than the worst of it.

Right now, my physical energy is slowly improving as the brain fog slowly lifts, but my stamina in both areas is very limited. By six p.m. every day I’m exhausted. By nine p.m. all I can think about is sleep.

Yesterday I answered a few client messages. It was the first time I’d been able to do so in a coherent and lucid way in literal months. And it wiped me out for the rest of the day. Not actual writing, mind you, just answering emails.

Today I went to the grocery store and bought a whole lot of things because it was the first time I’d had any interest in food in months and the ability to comprehend what I was buying and think far enough into the future to consider whether I’d actually eat it.

Apria, my medical device supplier, continues to be useless. Since the nasal pillow mask (which goes over and surrounds the nose, but leaves the mouth free) seems to work better than the full-face mask I was originally given, I intended to switch over “officially,” since the insurance company only gives me a month after receiving the CPAP to pick a mask to go with.

The World’s Most Useless Employee had given me to understand that I was required to meet with their office’s respiratory therapist to switch masks, so I agreed to do so.

Three phone calls and a week later**, I finally got ahold of The World’s Most Useless Employee #2, the respiratory therapist.

TWMUE2 was friendly enough, but seemed oddly reluctant to let me make an appointment with her when I spoke to her last Friday afternoon. She seemed to prefer to discuss it right then and there, so, fine.

She agreed that the nasal pillow mask was probably better, wondered aloud why on earth I’d been started with a full-face mask, and said she’d send me a nasal pillow mask to replace the one I’ve been borrowing.

Me: “So you don’t want me to make an appointment with you?”

TWMUE2: “No, I think you should be okay with the new mask.”

Me: “If I have questions or need more input, can I talk to you directly again or do I need to go through TWMUE***?”

TWMUE2: “Well, it’s actually my last day, so you’ll need to talk to TWMUE.”

And then she skedaddled off the phone before I could ask if there would BE another respiratory therapist to talk to before my first month on the CPAP is over and I’m locked into my current equipment.

Cool, cool.

dispatches orca squad

To TWMUE2’s credit, she did overnight me a mask. It’s like the other, but with memory foam that sits on the face. I’m not thrilled with the memory foam because it makes the whole thing feel heavier/more obtrusive on my face, but I lack the spoons to fight it and maybe I just need time to get used to it anyway.

I started having a lot of back pain when I was deep in sleep deprivation, from sleeping in weird positions, and it’s markedly worse with the CPAP. I guess from feeling forced to sleep in one position all night and not move? I’m not looking for advice — I’m doing stretches and exercises for it and I’m signing up for yoga again — but just noting it in case it makes anyone else feel less alone. (And when I shared this, many people noted the same experience.)

*That was the mask TWMUE had pushed me into. I decided not to elucidate, and smiled and nodded instead.

**TWMUE was supposed to arrange the appointment, so I was giving her time to do so. That of course did not happen.

***Obviously I did not call the respiratory therapist’s coworker useless while on the phone, but you get what I mean.

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.