I see hope in 2020s

Written last night:

I wish there really were such a thing as an all-purpose cleaner, but Tilex is better for mold and mildew because it sprays more evenly rather than in clumps, CLR is good for scrubbing the shower, toilet, and sinks, and Clorox wipes are best for wiping down countertops.

We ran out to Publix yesterday because we both wanted something different for a change, so we got some cooked food. He got potato wedges, and we shared some macaroni and cheese, which I let him have most of because it was kind of peppery. I got fried shrimp and ribs. They were really good.

I like that the CPAP has a dial instead of a touchscreen. It’s right behind my head on the headboard shelf, so this way I don’t have to worry about bumping it. While it would be great if I could get used to this thing eventually and it would restore my energy, it kind of sucks to know that I’m likely stuck with it for the rest of my life.

It seems like there’s never any undoing my problems. No cures. Just treatments. And if something does get cured, it eventually returns to haunt me somehow. I wish there was something I could do to restore my thyroid, but even if it were possible to give me a thyroid transplant, the antibodies would only attack that one as well. Still, it’s sad that I’m never going to be able to sleep normally again. I’m never going to be able to simply fall into bed, close my eyes, and sleep, regardless of any outside sources that may wake me up.

So I have to remind myself that hey, if this thing can restore my energy and give me my life back, then it’s worth it. As I get used to it, I can hopefully save money by no longer needing nose strips, but for now, I continue to wear them because it may be a while before I’m able to sleep through the whole night with the nasal pillow. I hope to beat last night’s time. The money spent on nose strips may have to go to mouth tape if I end up having mouth farts, LOL. Sometimes my mouth fills with air, and that eventually leaks out. Hopefully, I’ll adapt to that and the ramp-up. They’re definitely sensations I’m not used to. It would ramp up, wake me up, ramp down, then ramp up again as I would fall asleep, and so on and so forth.

It’s pretty amazing how it knows exactly how much air I need. They wanted it set in the standard range of 4 to 20, so going up to 7 wasn’t that high. Who knows how much higher it may go the more I use it.

I read the wrong list of rides. The May challenge is scattered throughout Europe and not the U.S. That’s why it’s called the Eurovision Challenge. I’m starting off in the Netherlands, and eventually, I’ll ride through Luxembourg, England, France, Sweden, and Ireland.

Written this morning:

Unless something up there is trying to tease the shit out of me, I have real hope for the first time in nearly half a decade where my fatigue is concerned!!! The only thing I can’t tell for sure is how many events I had were actually real events, and I doubt most of them were, because I wore it for nearly two hours before I crashed and had trouble falling asleep. If I yawned or cleared my throat, it would count as an event.

What’s exciting is that I slept with it longer and scored a 97! Even more exciting is the energy I have today after just two nights of using it! Like I said, I hope nothing is just teasing me, because sometimes I do have good days. But this is a really good day, and it will be interesting to see how long the energy lasts (I’ll update that in tomorrow’s entry). Usually, on the days I do have energy, it doesn’t last all day.

I woke up with the usual dread, thinking, Oh no. How exhausted am I going to be today? How much am I not going to be able to accomplish because of it? How much is it going to fuck with my mood? But as soon as I got up and started moving around, I noticed the difference.

Also, interestingly enough, I haven’t had to get up to pee since using the thing during my sleep. Both Andy and the pulmonologist said it cuts down the bathroom trips. I joked with Tom that maybe he needed a CPAP because he always gets up to pee. The pulmonologist did say that some people benefit from CPAPs even if they don’t have sleep apnea.

I’m not saying this will be the case for sure, but I may end up with a routine where I start off without it because it’s so much easier for me to fall asleep on my stomach. It’s easier to shift onto my stomach in the middle of my sleep with the mask on than to fall asleep with it in the first place. So I may end up falling asleep without it, waking up, and then putting it on. I’ve now got the most efficient way to get the thing on quickly. I just drive the nose holes up my nose, grab the bottom strap, and slip it over my bun. As soon as my nose gets used to it, I’m good to go.

Because there’s pressure underneath the nose, it gets sore. The nose holes don’t go very far into the nostrils at all, but more like against the openings. But there’s still an upward pressure for some reason, so it’s going to take time to get used to it. It was on and off last night. I took it off as I was falling asleep, and then I later put it on and didn’t get woken up by it ramping. It ramped up to 9 this time. Then I took it off because my nose hurt.

As I said, the number of events isn’t likely accurate. I’ve got to do an even better job of making sure I only wear it when I’m actually sleeping to get a better picture of how many events are real. I’m not nearly as worried about central as I was, even though it’s still picking up between 1 and 2 centrals, because as long as it doesn’t go over 5 and you feel refreshed, you should be fine.

If I can continue to feel better and better physically and therefore emotionally, it will be worth knowing I’m likely stuck with it for the rest of my life. According to AI, even if I were suddenly at an ideal weight, I only have a 10 to 30% chance of getting out of it.