KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
It's two fifty-four AM as I sit here in my bed typing furiously and anxiously, wide awake as ever. I have my coffee and nearly complete silence, and sleep is not a possibility tonight. Yes - I have coffee at nearly three in the morning.
But hear me out.
I decided that I couldn't be awake earlier this afternoon and took a "short nap" which ended abruptly after my mom stormed into my locked apartment and demanded to know why the hell I wasn't answering my phone. Why weren't you answering my text messages either? Hell of a way to be awakened from what was up until that point a very nice rest.
It turned out that my phone had stopped recognizing my SIM card earlier in the day.
But I digress.
I'm awake because I slept this afternoon. And I slept this afternoon because I woke up early this morning. Of course, my waking up early had nothing to do with my being a 'morning person' (is morning a real thing?) and everything to do with the fact that I passed out asleep quite early. Because I was writing all night the previous night, awake, anxious, trying to be productive. My mind was racing all night long.
In this instance, I had a reason, of sorts. I'd been given a press release about information that'd be going live at nine AM and asked if I could do something with it. I got this after midnight; so, you see, I was completing a real task. That time.
Most of the time I'm just awake. Almost all hours of the day I just sit here, awake, not tired in the least. Sometimes I catch a nap here and there if by chance I feel sleepy. It's rare that I would feel it necessary to sleep at all. One time, a few years ago, I went almost five nights and days with no sleep at all. Not even a nap. Let me tell you, at that stage you're seeing things that aren't there. Maybe hearing things. It's disorienting.
When you've gone that long without sleep you're no longer thinking of sleep. You just want to be able to see straight. You want the dizziness and the disoriented feeling of always being so close to falling down, to walking into a wall, to stop. You want to be able to make a phone call and remember what you talked about ten minutes later. At that point sleep isn't on your mind. Being productive isn't on your mind.
I don't go that long without sleep anymore. The reason why is called 'diphenhydramine'. There's always something I can do.
I hardly take that stuff anymore, though.
One thing about someone who's had sleep issues since around age thirteen is they've probably tried everything to sleep. Herbs. Narcotics. Sedatives. To be up front, benzodiazepines were pretty awesome when they were prescribed to me for sleep.
But no more.
After awhile, things stop working. The things that don't stop working are too addictive for long-term use.
And the last thing I need to be is an addict. It's not something I could handle in my life. Having grown up around my mom's first husband who was an alcoholic I witnessed that struggle firsthand.
It's a lifetime fight to just avoid certain substances. It's not something to screw around with.
I'm just saying I can't take anything for sleep, anymore. Well, maybe sometimes. Screw it, I actually wish I could take something every night. And I wish it would work. But it doesn't, and I don't. So there is that.
Another thing about having my sleep schedule thrown off is who the hell is awake at this time of day? No one, that's who. It's funny, even my college-student-aged friends all went to sleep about four whole hours ago. I have no one around to converse with. And honestly, as a political blogger, I usually have nothing to write about this late - unless I get a scoop. Which has happened twice. That's two times in my whole life. And then, of course, there's the idea that I may fall asleep sometime when the sun comes up and then I'll be unconscious during the entire day and if I miss something, well, I've missed it.
Remember when I said I have anxiety about this? That's part of the reason. A big part of it. Most of the time, I end up awake during my days, because I'm terrified of just disappearing off the face of the siteearth for enormous stretches of time. And people have short memories, especially on blogs. So I stay awake. All night, since I have issues. And all day, since I have... well, other issues.
Sometimes I'll go for long stretches when I'm never asleep. Other times I'll go for long stretches when I'm never awake.
True story: in my more depressive days, I've slept for 21 hours in-a-row. This happened several times. It's been over a year, to be clear, but it was ongoing for a long time there in the not-so-distant past.
I love sleep. So much.
In the past, there were months-long time spans in which I'd lose contact with members of my family, with friends, and everyone else. I wouldn't check my mail. I wouldn't clean. I would just sleep. A lot.
I actually didn't get on AOL Instant Messenger for half a year, and my friends - none of whom live near me - were quite upset. I can't blame them. But I was spending all the time sleeping.
Even when I'm not depressed it seems like I find myself asleep at the most inappropriate times. No matter what I do I can't fix this. You'd think that if I stayed up all night and day, I could sleep the next night. But it doesn't work that way. Not for me.
And it's like I either can't sleep or I'm always asleep.
But when I'm awake, like I am now...
Sleep aid doesn't work. Trying to will myself to sleep doesn't work. Hitting myself in the head with a hammer-okay I haven't tried that one. But still. What is someone supposed to do? If I just go crazy on sleep meds then I'll just be unconscious for most of my life. There is no balance in any of this.
I chose the coffee right now because, god, I want to enjoy the time I spend awake.
If I could just sleep at night and be awake during the day I'd be happy. But I can't.
I know nothing about the cause of this. I do know it's a long-term problem for me and I know what doesn't work. Which is, you know, everything.
Sleep is a real problem for me.