Caught in a negative sleep loop

July 20, 2014

It’s no secret that I have sleep issues. I’ve had sleep issues for as long as I can remember. My mother says that as a toddler, I didn’t nap. I remember pretending to nap in preschool so the teachers wouldn’t get mad at me for being awake. I would lay there quietly, feeling restless and bored. Things didn’t get better as I got older. My point is, sleep problems aren’t new to me. But they’re still a pain in the ass.

I got diagnosed with a form of sleep apnea earlier this year. Using a cpap machine has made a huge difference. Or at least, it 2014-04-23 11.03.16did. My problem is that the mask needs to be replaced every 3 months, and I noticed a huge difference in my sleep about 2 weeks before that 3 month time was up. But when I reached the 3-week point, I had some insurance issues, so the company wouldn’t give me a new mask. I get it from their point of view – they had no one to bill but me, and I wasn’t jumping to pay $400. Still, this was a real problem. I waited anxiously for Medicare to come through, or for Medicaid to be more solid, or something. Then, finally, I got the insurance issues temporarily settled and I got my new mask a few days ago. Relief was in sight!

But it didn’t work. It got worse. Sleeping with the cpap right now is only marginally better than sleeping with out it, and sometimes it’s worse. My adrenal insomnia has returned. When it started last year, I had no idea what was happening. I’d be sleeping normally, then wake up around 3 or 4am, and it would take 1-2 hours to get back to sleep. I finally found other people mentioning it in some of the thyroid and adrenal online groups. It has to do with a change in cortisol levels around that time. It was making all of my sleep and energy problems worse. It didn’t happen every night, but I didn’t know which would be the nights it would hit me. I was so glad when they disappeared completely with the arrival of the CPAP machine. I was sleeping through the night again!

And now it’s back.

Twice in the last three nights I had that adrenal insomnia. Twice I found myself awake at 4am. Twice I have woken up feeling like a zombie. And the night in between I slept straight through for 10.5 hours and woke up feeling unrested. Not exactly an improvement.

I would love to go to a picnic this afternoon, but I wonder if I should just stay home and rest. Some friends invited me to watch an outdoor movie with them, but I’m thinking I might be better off having a quiet night at home. Then again, since I seem to be caught in this miserable loop, maybe I should just go out anyway, because chances are, no matter what I do, I won’t be sleeping well tonight.

[Note: I have messages waiting for both the CPAP supplier and my sleep doctor, so I’m hoping that one or both of them can help me figure out what’s going on. But today is Sunday, so I won’t be seeing any improvement tonight, unfortunately.]


The “Is it worth it?” analysis

June 29, 2014

I went dancing! I haven’t been dancing in ages, and I hadn’t planned on going any time soon. But there was a street party and it looked awesome and I was with friends…. so why not? And when I say “street party” I mean a serious street party. A2014-06-27 20.36.49 major road was blocked off. There were spotlights on roofs and funky colors displayed on city hall. The music ranged from club remixes to motown to disco to whatever else you can dance to. There were congo lines in the street. A beach ball was being tossed around through the crowd. And the weather was cool and pleasant and I felt decent. So why not?

Well, I’ll tell you why not. Because pain. Because fatigue. Because sick body. Yeah, that.

But it looked like so much fun! So I asked myself, “Is this worth it?” And then I continued to ask myself that question every five minutes for the next 2 hours. Sometimes I came close to going home, but then I decided it was worth staying. The question wasn’t whether or not I’d feel horrible later or the next day. I knew I would. There was no question about that. But if I never did anything that made my symptoms worse, I’d never do much of anything (including typing this right now.) Some things aren’t worth the extra pain, fatigue, nausea, etc., but some are. And this was.

The "Is It Worth It?" Graph

The “Is It Worth It?” Graph

At a certain point, I knew I was reaching that point where it wasn’t worth it anymore, so I headed home. The fallout wasn’t too bad. I felt lousy the next day, but not as horrible as I’d have expected. I’m still recovering, but it’s going well. And I have no doubt: it was totally worth it!


Making the good days into great days

June 25, 2014

It’s been one hell of a week. There’s a lot I could write about, both good and bad. I choose to focus on one of the better parts of the last week.

They say old friends are the best friends. I don’t know if that’s true for everyone, but it is for me. I have a lot of wonderful friends, but the ones I’ve known since childhood are just amazing. Part of it is that we’ve known each other for so long. We’ve seen each other through sicknesses, marriages, children, graduations, job changes, big things, small things, and everything else. Part of it is that they just happen to be really wonderful human beings. And the other day we were all in the same place, at the same time.

We don’t have many reunions. It’s gotten harder as everyone has had kids. I can’t imagine how much harder it will be if more people more away, or if people move farther than driving distance. It had been over a year, and we were so excited to see each other! As my mother said when she saw the photos, “The smiles on everyone’s faces just says it all.” She’s right.

I was nervous about my health leading up to the reunion. In general I was worried about how I’d feel in the heat of late June (though everyone agreed to keep the party indoors in air conditioning if I needed it.) More specifically, as the time came, I was feeling particularly lousy. I got incredibly lucky with the weather; not only was it an unusually great June, but the days leading up to our get-together weren’t hot or humid, and the days of were good, too. That helped a lot. Still, I felt horrible for other reasons. I won’t give the full back story here (like I said, I’m focusing on the good things,) but basically there were adrenal problems that triggered all sorts of symptoms and my supplements just weren’t doing the trick.

If this had been any other gathering with friends, I would have simply cancelled. But I’d been looking forward to this for many months and I wasn’t about to miss it! So for two days I ate very little, I took extra adrenal supplements, I adjusted my sleep patterns, and I just pushed through. I felt lousy, but I hid it the best I could. Everyone knows about my health issues and they are the most supportive friends I could ask for. But just once, I wanted to have conversations that didn’t even touch on my health. So I hid how I felt. And I had a great time. I had so much fun with my friends, that I was able to ignore my aches, pains, nausea, and the rest for most of the night and the next day. I got down on the ground, I held babies, I fetched things for others, and I faked it til I made it – and it worked!

Pushing through sometimes works for me, but it’s rare. Very rare. Incredibly rare. I-can-count-it-on-my-fingers rare. But if it’s going to happen just once, I’m glad it was for those days. They were just fantastic. I couldn’t have asked for better. And I’ll be holding on to those memories as I anticipate our next reunion. Hopefully I won’t have to wait another year! And hopefully I’ll feel ok.


In between medical and clumsy

June 20, 2014

I wonder if it will leave a scar?

I suddenly wondered just how many times I’ve had this same thought in the last few years?

Oops!

Oops!

Now I’ll admit, I was never what you’d call graceful, and I certainly couldn’t dance, but when it came to my hands, I was pretty coordinated. I played musical instruments. I juggled really well. You know that trick of patting your head with one hand and rubbing your stomach with the other? I could do that without a hitch, and I switched my hands easily.

And then I started having trouble. For most of my life I was a truly horrible cook. Really. No kidding. Just dreadful. But a few years back I finally learned how to cook and I did ok. Until I started cutting myself. I’d laugh off a slip of the knife, ha ha I’m so clumsy, but when I had to throw out part of an apple crisp because I got blood in it, I knew there was a problem. There were cuts, burns, and spills. Last week I cut my fingernail off with the knife. I’m just glad it was only my fingernail! There’s some sort of disconnect between my brain and my hands these days. I can feel that it’s tied into the brain fog, but I can’t think it through well enough to get beyond that. That figures.

Last night I had meat cooking in one pan and veggies in another. I was doing really well with the cutting. Maybe my cutting success made me let down my guard? All I know is that I reached for the handle of one pan, and somehow pressed my finger into the edge of the other pan and it took a second longer than it should have to realize what I’d done and to pull my hand back. It hurt, but I didn’t think too much of it until a few minutes later when I noticed the skin peeling away. It hurts a bit, but it doesn’t look too bad. Mostly, it just feels bad mentally, because I know how it happened.

Then again, thanks to the brain fog, I can’t remember exactly what caused the other scars on my hands (though I’m sure it’s all related to kitchen brain fog) so I’ll probably forget this one too!