Ever since I was 12 years old, I have been completely unable to fall asleep for several hours after I go to bed. If at all. I don't even worry about anything, most of the time; it's just like my brain won't shut up. Usually, the worst episodes involve an endless stream of songs playing in my head, over and over, punctuated by truly meaningless thoughts. Lately there has been a shitload of Taylor Swift, which is problematic because her songs are SO. DAMN. CATCHY. I mean, it's not Taylor Swift's fault. But have you ever been on the verge of falling asleep, and then your brain reminds you that we'll never go out of style? And the players gonna play, play, play, play, play? And then, of course, I think I've seen this film before, but I didn't like the ending. And I don't want to keep secrets just to keep you. Because it's a love story, baby, just say yes. (Seriously, I love you, Tay. You are a goddamned genius. But please, for the love of God, take a break from writing delightful songs. Take Meredith, Olivia, and Benjamin, and just, like, read some books for awhile.)
Okay, so imagine this going in your head for, I don't know... Four, five hours? And the only breaks you get are to wonder about really important things, like whether or not ducks have thumbs. By the time your mind finally starts to slow down, you're so stressed out about the fact that your alarm is going off in 3 hours that you're pissed off at yourself for not being able to get your sleep shit together. You close your eyes and try to slow your breathing, focusing on the word, REST while you bring awareness to the tension in your shoulders. You breathe in, then exhale slowly reminding yourself, Relax your shoulders.
For a moment, everything is finally quiet.
'CAUSE BABY NOW WE GOT BAAAAD BLOOOOD!
Son of a BITCH.
So, I take a low dose of a sleep medication before bed, and it works perfectly. Apparently it is meant to help you fall asleep, but it metabolizes very quickly, so you aren't completely knocked out for hours on end. Most nights, I have about 30 minutes of being drowsy enough to fall asleep, and then I stay asleep without problems. I can be awakened without side effects, but I usually sleep really well once I get over the hump.
The problem is, when I don't take my meds, I've developed a fun, new issue:
The family curse that is severe obstructive sleep apnea. Yayyyy.
About a year ago, I noticed that when I was napping, I was waking myself up repeatedly from snoring. Occasionally, I would be asleep, and I would have a dream that involved the very real understanding that I was dying. Not just "I have cancer and I don't have much longer left." These were dreams that involved violent and/or terrifying, imminent threats, like being shot in the head or being held underwater as I drowned. At the moment in these dreams where I died, I felt an indescribable awareness that this might not actually be a dream anymore, and I might literally be dying in real life. At these moments, I would wake up, gasping for air. Which, unfortunately, is a classic indicator of sleep apnea. Given that several of my family members have the anatomy differences that basically guarantee problems with apnea, it wasn't really a big shock that I would eventually develop similar issues.
But all of this is complicated by the fact that I have fibromyalgia. Or it might even be caused by the fibro. We don't really know.
Research from the University of Michigan suggests that there may be a link in fibromyalgia and REM sleep. My doctor suggested to me that fibromyalgia, which is a disorder of the central nervous system, could be both caused by and exacerbated by lack of restorative REM sleep. Because the central nervous system is overactive, the REM sleep that normally allows the body to repair itself (I'm heavily paraphrasing, here) does not happen as it should. In absence of this restorative sleep, pain worsens. And, as pain worsens, insomnia worsens. And, as insomnia worsens, pain worsens. And...
See the problem?
Luckily, as I mentioned before, a low dose sleep medication has been incredibly helpful for me, in terms of achieving enough restorative sleep to keep my pain levels and brain fog under control. Basically, as long as I'm sleeping well at night, my fibromyalgia is totally manageable with ibuprofen and coffee during the day.
However, now that obstructive sleep apnea has joined the party, everything is a complete shitshow.
One doctor says, "You absolutely cannot take sleep medication. If you sleep too soundly, you could stop breathing and you could die."
Another doctor says, "You absolutely have to get quality sleep. Long term lack of REM sleep can give you fatal side effects, and you could die."
One doctor says, "You're not a candidate for surgery because your obstructive anatomy is too severe. Get a CPAP! It'll allow you to breathe, so you'll be able to sleep!"
And my family who has all been through all of this before says, "Oh my God, CPAP is fucking pointless. Have surgery."
So, I've got some stuff to figure out with my sleep.
I did a sleep study a few nights ago, which is an excellent way to pay your entire annual deductible and get put in time-out for 8 hours. If you're not familiar with the process, you show up to a "sleep center," which is basically like a very small hotel, and get hooked up to at least 50 electrodes that will measure all the things one can have measured during sleep. Bands around the chest and ribcage to measure your heart rhythms and breathing. A pulse oximeter on your finger to measure your oxygen levels. Sticky, wired pads on your legs to monitor any kicking or twitching. And more on your chest, and neck, and back. Pads on your chin, your cheeks. A nasal cannula to deliver oxygen if necessary. And about 30 pads and plugs glued all over your scalp, to measure your brain waves. Plus, a video camera recording you the entire time, to see if you're sleepwalking or tossing and turning.
You're given a call button to wear on your wrist, like a watch, and you press it when you have to get up to pee. Because all these wires are attached to control boxes and walls around you, and you're not going anywhere unless they unplug you.
You're basically tied to the bed, NOT in a good way, and you're supposed to just drift off into peaceful slumber, and I can't even type that without laughing because OH MY GOD, it is so awful. You also can't take your sleep medication before you do this, either, so you're just free-balling it through an evening of medically-induced solitary confinement.
And the best part is, they tell you that you're not allowed to sleep on your stomach. Which is literally the only way I can fall asleep.
I don't have any results yet, but I'm not all that confident I had any useable data from the process. I don't think I feel asleep once.
So, why the long and winding post about my insomnia/apnea/fibromyalgia woes?
Because if I've learned anything from fibromyalgia, it's that it can feel so damn lonely to know that your body is so complicated. And if you're like me, I think you deserve to hear that you are not alone. I see you, I feel you, and I understand how it feels to learn that in order to solve one problem, you might have to make a different one worse.
It can be incredibly isolating to feel like you have to sacrifice quality of life for quality of life. Like your body is inherently wrong.
I get that positive attitude and resilience are critical to having good outcomes. So, it doesn't make it better to just sit around and bitch about it. Especially when your problems are so small compared to things like autoimmune diseases, or cancer, or COVID-19. It's not like we're talking about anything fatal, right? Why complain about it if you're really just dealing with manageable symptoms? Uncomfortable, sure. But not life-threatening. It's just pain and trouble sleeping, most of the time. Nobody died from being inconvenienced.
But it's hard to find the balance between honesty with yourself about how you feel and motivation to make the best of it. How do you learn how to persevere without first accepting that there's a problem? How do you learn how to take care of yourself if you don't first acknowledge that you're not well? And how do you find the strength to advocate for yourself if you never really admit that things need to change?
My point is: I get it.
Whatever your health looks like, I understand that sometimes, life just puts us in situations where we can't make it better without making something else worse. If you're struggling, I hope you know that it's absolutely, perfectly fine to be pissed off about it. Good vibes don't fix everything.
If you're hurting and you're bummed about it, I get it. I love you and I'm here for you, and you're not alone.