From 23a071ddf092f536ebc767d638285dd5bbc511c6 Mon Sep 17 00:00:00 2001 From: John-Michael Reed Date: Sun, 15 Sep 2024 11:55:36 -0400 Subject: [PATCH] Update README.md --- README.md | 5 +++-- 1 file changed, 3 insertions(+), 2 deletions(-) diff --git a/README.md b/README.md index 95e0d0d..055c07c 100644 --- a/README.md +++ b/README.md @@ -1,4 +1,4 @@ -# Essay for Disability +⁸# Essay for Disability This essay is also available on Google Drive at: https://docs.google.com/document/d/14mocB-F96UiHw48CIMd0MvJLAWFxDCgAqwXC52QPA4Q/edit?usp=drivesdk @@ -46,13 +46,14 @@ There is another aspect of cognitive issues that I would like to talk about befo ____________________________________________________________________________________________________________________ + ### Sleep Issues Exiting the tangent where I wrote about cognitive issues, the second reason I can’t work is my sleep schedule, which (without any apparent trigger or logical explanation) stopped responding to daylight beginning some time toward the end of year 2021 I believe (I don't remember exactly when). My sleep schedule is not precisely predictable, but I tend to go to sleep and wake up each night later than I did the night before, resulting in me sleeping around the clock. For example, each day, when I sleep naturally, I sleep about 9 hours (if my sleep is uninterrupted), but on January 4, 2022 I woke up at 2PM. The day after that I woke up at 4:30PM. The day after that I woke up at 7:40PM. The day after that I woke up at 7:45PM. The day after that I woke up at 11:10PM. The day after that I woke up at 11:20PM. The day after that I woke up at 10:13PM, so my sleep time doesn’t necessarily get later each and every time, but the general trend is for it to get later. Just laying in bed in a pitch black room at night doesn't make me tired or go to sleep. Normally the sun regulates the sleep wake cycle, but for me it doesn’t—I sometimes feel like it’s the middle of the night when it’s actually the middle of the day and the bright Florida sun is shining on my face. I tried to normalize my sleep by taking sleeping pills (I’ve tried three different sleeping pills: over the counter Unisom Sleeptabs, Benadryl, and prescription benzodiazepines) in the evening but they only make me fall asleep when I already feel tired and oftentimes I don't feel even the slightest bit tired even at 2, 3, or 4 AM. I bought caffeine pills but I never took them because caffeine might trigger a manic episode and it's not good for my health (and then my parents threw them out). I also tried making the lights dim at night and exposing myself to sunlight during the daytime but that made no noticeable difference. There is something wrong with my circadian rhythm. If I worked a nine to five job, I would probably fall asleep during my job. I don’t know why my circadian rhythm is messed up, only that it is messed up. Neither my previous psychiatrist (Dr. Alexander Pushka) nor my current psych doctor (Advanced Practice Registered Nurse Edgar Matamoros) take issue with it as long as I’m not in a state of bipolar mania (bipolar mania usually includes getting less sleep, but my number of hours of sleep hasn’t changed). Oh, and this is an update written on 10/7/2022, but I did some research and this phenomenon of tending to go to bed and wake up later each day than you did the day before is called Non-24-Hour Sleep-Wake Disorder (or Non-24-Hour Sleep/Wake Phase Disorder) and the only FDA approved drug for it, brand name Hetlioz, is only approved for the blind and I'm not blind (this disorder usually happens to people who are completely blind and cannot see any light), fails 80% of the time even on the completely blind, and costs over $25,000 a month, so I think I'll probably just be living like this. I made an appointment to see a sleep specialist, Dr. Boris Betancourt, for January 19th 2023. Anyway, I'll see what Dr. Betancourt says and maybe try something but if it doesn't work I might just be like this for life—Wikipedia says this condition has a duration of "lifetime". This is an update on Jan 21, 2023, but after talking to Dr. Betancourt (who didn't even recall the name of this condition until after I showed him some articles) I started taking 3mg of over the counter melatonin tablets at night and exposing myself to extra light during the daytime. I don't think the light makes any difference and I'll see if the melatonin works. Update on Feb 11, 2023—I’ve been waking up between 7AM and 2:30PM these past 3 weeks, so maybe it works (I sort of get the impression that it gets a little later on average but not by as much each day as it used to, but I haven't run the numbers yet)—I’ll have to give it more time and then run an A-B-A-B single subject design experiment (I’ll talk more about what that is later) to make sure that the melatonin consistently produces this effect and that it’s not some sort of coincidence or false impression. The quality of sleep definitely is worse than when I let myself sleep when I naturally felt tired without melatonin. When I was consistently sleeping around the clock I would have a moment when tiredness just hits me, I would put my head on the pillow, fall asleep quickly, sleep without interruption, and wake up feeling refreshed (even if the wake up time was like 10PM), but on melatonin now none of those things are true for me. I often find myself in a state where I feel tired but cannot sleep while using the melatonin (and this is without using an alarm clock, if I used an alarm clock I would get even less sleep and feel even more tired, and lack of sleep makes me feel depressed and worsens my cognitive functioning even more). Also on the melatonin bottle it says "limit use to two months with a break of one week" and if taking melatonin becomes a permanent thing for me I will not be doing that, and I don't know what going against the warning on the bottle will do. Oh well. This is an update on my sleep: I last woke up at 7:24 AM on 3/12/2023 and I've been awake ever since even though it is now 4:20 PM on 3/13/2023. I've been awake well over 32 straight hours and this isn't normal for me. I took the 3mg Melatonin last night but I didn't fall asleep from it. I don't even know anymore. I can't guarantee my attendance or RSVP ahead of time because of unpredictability in my sleep schedule. This is an update on 3/24/2023 but after my sleep got significantly desynchronized from the 24 hour cycle the melatonin stopped working so I stopped taking it, and honestly, I feel much more alert and well rested this way, sleeping at abnormal hours the way I do naturally, so I'm just going to keep doing that. This is an update on 4/15/2023, but I started taking the melatonin at 10:30 PM each night again, and I slept at night for several nights, but then last night I took the melatonin at 10:30PM and didn't fall asleep until after 7AM this morning, so the melatonin really isn't reliable long term. Now my sleep is desynchronized again after having been asleep all day and there is no use trying to sleep at night tonight, even with melatonin. The overall impression I get is that it kinda works, but not well. I also tried blue light therapy and that didn't work at all, it's no better than just going outside in Florida and getting some sun on a day when the sky is blue, which again didn't help. -This is an update on Jun 9, 2023, but I discovered something people who don't have Non-24 may not understand about sleep after discussing my condition with a person who doesn't have Non-24. The guy who I was discussing my condition with thought sleep works kind of like food. Like if you miss breakfast, you just eat a bigger meal later on. Sleep doesn't work like that. Like if every day you get in bed at 10PM and get out of bed at 7AM and one night for some reason you have insomnia and can't fall asleep all night, you won't just start sleeping uninterrupted from 10AM to 7PM. You might be able to take a midday nap, like a Siesta (which I know they used to do in Spain), but you won't be able to have a full-length, deep, uninterrupted sleep with sunlight in your room that you can see on the inside of your eyelids when you close your eyes. Like imagine that such a person has a device hooked up to their head (like an EEG machine) that can detect when they are asleep by reading their brainwaves and it will shock them awake after a short time if they fall asleep during any time that's not between 10AM and 7PM. The idea is to try and force them to sleep each day between 10AM and 7PM despite the fact that that's not naturally when they feel tired. Assuming they still get regular daylight exposure, they will never sleep uninterrupted throughout those hours even though they get woken up when they sleep during any other hours. Instead what will happen is that at night, when they normally sleep, they will fall into brief "microsleeps" (defined as "involuntary episodes of sleep lasting a few seconds, sometimes with eyes open") and then get woken up. Like they will constantly be in this sort of half-asleep state, especially at night during the time they sleep naturally. They will not just naturally start having a full night's sleep between the hours of 10AM and 7PM, especially if they get normal daylight exposure and don't have any sort of sleep disorder. Like people are hardwired to have a certain time when they get tired and a certain time when they are most alert and you can't force them to sleep during the time when they're most alert, even if they're sleep deprived, especially if it contradicts with their daylight exposure. Non-24 is a debilitating condition for the people who have it and in general if they are forced to be awake during the day, instead of adjusting to their forced sleep time, they instead just fall into "microsleeps" or end up in a half-asleep state during the day and still can't sleep at night. Trying to get a person with Non-24 to sleep at night is kind of like getting a person with a regular sleep schedule and regular daylight exposure to sleep every day from 10AM to 7PM. Like it just doesn't work. Oh, this is an update on March 1, 2024, but my sleep became normal for like a month and then I went back to sleeping during the day and being awake at night. I don't know what's going on. This is an update on Sept 7, 2024, but I had a two or three week period of waking up between 2 AM and 5 AM fully rested and not wanting to go back to sleep. Again, I don't know what's going on or why, and at this point I don't care. I just go to sleep when I feel tired and sleep until I'm done and I don't worry about the time. +This is an update on Jun 9, 2023, but I discovered something people who don't have Non-24 may not understand about sleep after discussing my condition with a person who doesn't have Non-24. The guy who I was discussing my condition with thought sleep works kind of like food. Like if you miss breakfast, you just eat a bigger meal later on. Sleep doesn't work like that. Like if every day you get in bed at 10PM and get out of bed at 7AM and one night for some reason you have insomnia and can't fall asleep all night, you won't just start sleeping uninterrupted from 10AM to 7PM. You might be able to take a midday nap, like a Siesta (which I know they used to do in Spain), but you won't be able to have a full-length, deep, uninterrupted sleep with sunlight in your room that you can see on the inside of your eyelids when you close your eyes. Like imagine that such a person has a device hooked up to their head (like an EEG machine) that can detect when they are asleep by reading their brainwaves and it will shock them awake after a short time if they fall asleep during any time that's not between 10AM and 7PM. The idea is to try and force them to sleep each day between 10AM and 7PM despite the fact that that's not naturally when they feel tired. Assuming they still get regular daylight exposure, they will never sleep uninterrupted throughout those hours even though they get woken up when they sleep during any other hours. Instead what will happen is that at night, when they normally sleep, they will fall into brief "microsleeps" (defined as "involuntary episodes of sleep lasting a few seconds, sometimes with eyes open") and then get woken up. Like they will constantly be in this sort of half-asleep state, especially at night during the time they sleep naturally. They will not just naturally start having a full night's sleep between the hours of 10AM and 7PM, especially if they get normal daylight exposure and don't have any sort of sleep disorder. Like people are hardwired to have a certain time when they get tired and a certain time when they are most alert and you can't force them to sleep during the time when they're most alert, even if they're sleep deprived, especially if it contradicts with their daylight exposure. Non-24 is a debilitating condition for the people who have it and in general if they are forced to be awake during the day, instead of adjusting to their forced sleep time, they instead just fall into "microsleeps" or end up in a half-asleep state during the day and still can't sleep at night. Trying to get a person with Non-24 to sleep at night is kind of like getting a person with a regular sleep schedule and regular daylight exposure to sleep every day from 10AM to 7PM. Like it just doesn't work. Oh, this is an update on March 1, 2024, but my sleep became normal for like a month and then I went back to sleeping during the day and being awake at night. I don't know what's going on. This is an update on Sept 7, 2024, but I had a two or three week period of waking up between 2 AM and 5 AM fully rested and not wanting to go back to sleep. Again, I don't know what's going on or why, and at this point I don't care. I just go to sleep when I feel tired and sleep until I'm done and I don't worry about the time. If I sleep at night or sleep during the day I don't care. ____________________________________________________________________________________________________________________