Yeah, this whole narcolepsy thing is losing its appeal. Not that it had much appeal to begin with. However, at least at the beginning, it was kind of funny. I mean, you hear about narcolepsy all the time. But hearing about it, it always seemed like something that wasn’t real. Something made up. When I was told I had it, I nearly had to stifle a guffaw. Good one, doctor. Well played. Only it’s not that funny, it turns out. The little novelty there was quickly dissipated. Now, it’s just really annoying. I’m frustrated. I’m angry. I just want it to go away.
The real irony of it is that the narcolepsy is causing me to not sleep at night. I lay down. I turn out the lights. I close my eyes and drift off. Only I don’t really. I constantly wake up, and the sleep I get doesn’t give me rest. So, when I drag my tired ass out of bed I have a terrible time staying awake. Are you kidding me?
However, my sleep neurologist (As opposed to my other neurologist. Aren’t I fancy? TWO neurologists!) seems confident we can fix this. I just paid him a visit. I told him about the not sleeping, and the wanting to sleep. He talked about the sleep disorder causing another sleep disorder, and told me my natural night owl tendencies didn’t help. That last one caught me by surprise. I do not recall telling him about being a night owl. Most people I do tell find it amusing, and they suggest going to bed earlier. I tell them that even as a tiny child, my parents put me to bed, and I would read via night light, or play with blocks on the side of the room they couldn’t see from the doorway, or sneak into the hallway to peer around the corner and watch Johnny Carson. Until my parents would catch me and try to get me to go to bed. Lather, rinse, repeat. Eventually, they gave up. They would let me read or whatever, I suspect because they figured letting me read by a real light rather than a night light would be better for me. I digress. He figured me and my night owliness out. I guess that’s why he has all the fancy degrees on his wall. He asked if it would be possible for me to work a third shift job. I told him that wouldn’t work so well with my position. Our department is a great fit for early-to-bed-early-to-rise types. Strangely, it’s a highly creative department. I don’t understand how those two are supposed to go together. Damn. More digression. So, since I’m a night owl, with sleep disorders piling up, his goal is to get my system to shift so taht I am sleeping when I should be, and awake when I should be. Since the first try was a lot of very strong sedatives, which I could stay awake right through, the second try was amphetamines during the day to keep me awake. Those seem to do the trick. At least for keeping me awake. So, now we are trying to get the sleeping thing to happen. Also, the waking up. I get to take melatonin now. After dinner, pop one to three of those puppies. At nine o’clock, all screens must be off (so far, I seem to be getting there by 9:15. I need to get better). No television, no laptop, no tablet, no smart phone. Eyes shut by ten. It’s a struggle.
I do not understand how I can be exhausted. Painfully so. That’s not an exaggeration. I am so tired I hurt. Yet, I can’t fall asleep, and when I do, I can’t stay asleep. If I’m that exhausted, the sleeping should happen. When I’m in bed. Not when I’m on the bus, or in the shower, or whatever. Anyhow, I just need to trust the doctor with the fancy degrees. I’m really trying.
On the bright side, I get to wear a fancy wristband for two weeks. It seems suspiciously like my FitBit. It’s got special (magical?) crystals in it that sense my movements and which are supposed to determine how much I sleep. It also has a light sensor on it. I also have a chart to fill out daily, hour-by-hour to corroborate the data. I shade in when I am asleep, I notate when I have caffeine, alcohol, and/or meds. I notate if I exercise, and if I take off the band. I think it will be a little interesting to see how it compares to my FitBit, since the actigraphy watch costs like $1000 and the FitBit costs like $100.
So, per doctor’s orders, I am now shutting off the laptop. The TV is off, and my phone is put away. This is night three. I am really hoping for results. I know that in the grand scheme of things, this isn’t the most terrible thing that could befall me. Yet, it’s still getting to me. So, thanks for letting me rant, and I apologize for no post yesterday. I was tired and shaking off a migraine, and I couldn’t get past my winky/squinty crankiness. I will do better, and make it up!
Good night, friends!
xoxoxo