The Click

My healing over the past three and a half years has not at all been linear. I knew to expect that because it rarely is, but also because both my neurosurgeon and my neuro-oncologist have told me so about a billion times. I left my appointments in March annoyed that I’d heard that again.

I get it and would like to move on with my life now, please and thank you.

Anyway. I’ll go through short periods of time when I’m doing great. Then stretches that I’m feeling just ok and then stretches of time that feel like they last forever and I’m doing awful and then…you get the drift. The bad times are getting shorter and shorter, and the time where I’m feeling ok, what I’d consider my baseline - not fantastic, but also not terrible either - is getting longer. The “holy crap do I feel fantastic” times are always short and fleeting, and I’ve become ok with that, actually.

The one part of my healing I’ve never been able to get under control is my sleep. I have some theories about why it’s so bad and also why having bad sleep is so distressing.

My entire life I’ve been a legendary sleeper. My ability to sleep through literally anything up to and including a train going through the house is the longest running joke in my marriage. I would sleep through the night, rarely wake up unless I was sick or randomly had to pee (which, no joke, literally happened maybe once a year), but once I was out, I was OUT. 

Then I had a hysterectomy. Then I had a thyroidectomy. Anyone who has ever had a medical procedure that messes with your hormones, or has gone through puberty or perimenopause or menopause, knows that when you hit those phases of your life, your sleep changes. That didn’t happen to me when I went through puberty that I can remember, so I figured that being shoved into surgical menopause wouldn’t be that big a deal.

At first it wasn’t. I was still recovering from the surgery and so I slept a lot. A LOT. I would say that the daily naps started after the hysterectomy and then just kept going from there. But during the night, I’d have super weird dreams, I’d toss and turn while asleep, but not wake up unless I had a pain or something, and my sleep was not super interrupted. I started to wake up more at night once I was fully recovered, but I wouldn’t be awake for more than a couple of minutes before I went right back to sleep.

Then I had my thyroid out. I started at a normal dose of thyroid hormone, and then my endocrinologist kicked it up several notches when I had to start suppressing my pituitary gland. Then I started seeing a new endocrinologist and he kicked it up even more. Then suddenly I wasn’t sleeping through the night at all anymore. This is one of those things where the shift was so sudden and alarming that I talked about it every time I was in front of a doctor. I’ll give you three guesses about what I was even offered to help. (If you’re wondering whether I would have taken a sleeping pill, the answer would have been yes. That’s how bad it was.)

If you guessed nothing, nothing, and more nothing, you’re right.

Fix your sleep hygiene. 

Don’t eat within the two hours before bed.

Don’t use screens before bed.

Stop napping.

Cool. Thanks. Napping was the only way for me to get through my day without falling asleep on a client, so that’s terrifying.

My favorite and most recent?

Don’t go to bed until you’re tired.

Here’s the problem. I don’t drift off to sleep. I have an on and an off switch. I am awake, and then I am asleep, and then I am awake again. That’s how my circadian rhythm works and has worked my entire life. So if I wait until I’m tired to go to bed, I will never again sleep in my bed because I will pass out on my couch and stay there until I wake up, which also happens a lot. That’s to say nothing of the idea that sometimes I don’t get tired until 2am. Sometimes I get tired at 8. Sometimes I have to force myself to sleep. And if I’m not home while I’m sleeping, forget it. Medical week, I averaged three hours a night. The night before my vocal surgery, I went to sleep at midnight and I was up at 2am doing diamond art, watching South Park (did you know that Comedy Central plays reruns of South Park through the night? Fun fact I learned!), waiting until a reasonable time to get in the shower. (I waited until 3:30.)

What has this resulted in? I haven’t had multiple good nights of sleep in a row in four and a half years. Like, not even two nights in a row. I’ll have the random legendary one-off, but that’s literally it. It’s been this thorn in my side the whole time.

I’ve had my hormone levels tested more times than I can count. That’s what I’ve been told is the problem this entire time. It’s just my hormones.

You know when the closest i came to getting normal sleep, hilariously enough? When I started on Ritalin. It calmed my nervous system and helped me operate in the world more regulated.

The only person who caught it or thought it might not be my hormones was my psychiatrist. “Your sleep normalized a little after going on a stimulant? That’s weird and not really supposed to happen. Your nervous system is not doing so great. How’s your stress?” We meet once a month and our entire conversation centers around my stress level and what I’m doing to keep it in check.

Nothing. The answer is always nothing.

I went off of Ritalin about four months ago because I started another medication that had stimulants and as it turns out, those two meds together gave me panic attacks.

My sleep got a million times worse. I tried the teeniest tiniest sliver of Ritalin, and all of it was a no.

But then I started seeing a functional medicine doctor. She put me on all of these supplements, and at first, nothing. Then I started to feel a little better. My head started to get back on straight. I started wanting to be more active. Then I started to be able to stay fully awake every day. Then my sleep started to get better. I wasn’t necessarily sleeping through the night at all, but my time awake was shorter and my sleep was deeper.

Then I started running again.

Then my head cleared, I felt the click that I feel when I’ve turned an huge corner with my healing. As a part of this, I made several monumentally huge decisions about my life over the last few weeks, the last and biggest this last Sunday. (That’s all I’m saying about this at the moment.)

I’ve gone to sleep at a totally normal time, slept through the night without waking, and gotten up at a shockingly normal time four nights in a row. I no longer feel trapped in my own head, or anywhere else for that matter. I can breathe.

I don’t expect this to continue. I expect that as these huge choices unfold, things are going to get stressful, but this time, I know there will be an end to it. There’s about to be a lot of uncertainty, but I can certainly tolerate that better than I could previously, so I think that won’t be a huge deal.

Regardless, I’ll take whatever wins I can get.