Here’s a window on what it’s like to live with my disabilities, particularly the sleep disorder aspect:
Other than managing to make it to Friendsgiving, I’ve had a bad four day weekend, healthwise. I’ve missed several fun outings that I actually didn’t even know about. I think I often miss notices and event invitations posted online because I spend too much time sleeping, trying to sleep or scrambling to get things done during waking hours when it’s acceptable to do things. I suspect also that sometimes people stop inviting me because they know I have trouble getting up on time and they don’t want me to feel bad because I often can’t afford to do what they are inviting me to do. Ironically, when I have steady social activities I get better at getting up. I’ve probably spent 75% of the past 100 hours in my bed. My back is a wreck. I was recently assisted with the funds to buy cushiony and supportive bed stuff and I can’t wait, because that will improve my sleep quality and make waking up less painful. Every little bit helps!
For now though, extreme insomnia rages, I’m too exhausted and too old to grit my teeth, caffeinate, stay up and push through after a sleepless night so I eventually nap and then don’t wake up because I’ve fallen into REM sleep. Once there, I have intense dreams that are very real and long. I have quests in my sleep. I solve problems. I have love affairs. I do interesting things. I meet strangers. I speak to demigods and ghosts. I do some of my best writing while unconscious. It’s almost like I’m doing all my living in my sleep.
Lately, I’ve had a lot of what other people would call nightmares, but they rarely upset me. My distress at being attacked by someone sinister or chased by lions or zombies is often lower than one would expect. Usually, I am merely frustrated and curious. It’s not often that the fear sticks with me after waking. Occasionally, I will dream about something horrific or evil and get stuck between dream and waking almost like sleep paralysis except I know I’m awake. In these cases I find myself fighting going back to sleep because I don’t want to go back into the dream or I will lie there feeling like something terrifying is in my home and I have to get brave to snap the spell. Once I get up, turn on lights, pee, drink water, it’s gone. It doesn’t happen often but I’ll take it over other people’s tales of sleep paralysis any day!
Yesterday I slept until nearly five in the evening. I had a lot of dreams where I was being chased and the consequences were such that I really didn’t want to be caught! I am often able to wake myself up in a bad situation, because I dream lucidly but usually, I can’t stay awake for long. I was dreaming something really gross and terrifying this morning, I think I was having my guts slowly chewed out by some hideous beast, very graphic, so I woke myself up, but fell back into the dream and had to wake myself up 3 more times.
I finally snapped out of it enough to look at the clock, but it was still 90 minutes before my first alarm and I hadn’t had enough sleep. I was also not awake enough to be decisive and just force myself up, so I nodded off and proceeded to fall into a deep sleep with several rounds of heavy dreaming. I worry that at some point an emergency will happen, like a fire and I will not wake up. I can set 5 or 6 loud alarms but if I am in this deep sleep mode, I don’t wake. I think it’s possible I sleep through the alarms, but more than likely, I wake just enough to turn them off. It helps if my bladder forces me up but for the last week, I guess I’ve been using more fluid than I’ve been flushing through so I am waking whenever the hell my brain is ready to wake up. That’s been anywhere from 3pm to 730 at night.
This wackiness is the main reason I got my disability approved. I’m unreliable because my sleep patterns make it so I can’t commit to any consistent schedule because I am at the mercy of my weird brain. And yes, I have done all the things. This disorder is resistant to sleep hygeine, routine, foods, drugs, etc. It’s related to my PTSD and my MS and it’s exacerbated by chronic pain and fatigue. The only time I’ve ever managed a semi normal schedule is when I was with a couple of men who I liked to call, “sleep dominant” because I felt safe enough to go to bed when they said it was bedtime and actually fall asleep next to them.
I’ve mostly just realized I am just different than everyone else and it doesn’t have to be a big deal. But it is a big deal when I want or need to do something during daylight hours. It’s been hell trying to get things packed and storage moved. When I don’t have help, which is unfortunately, the norm, getting anything done is painfully slow and often expensive. Some weeks are better than others. The winter is harder, especially right after the time change. The sudden deep, dark paralyzes me.
If I have to be up early, there’s always the possibility I won’t wake up. I slept for about 8 hours today. It wasn’t the best sleep but I should start to feel awake in a couple of hours. Unfortunately, I need to be up by 730am at the latest tomorrow. I have a plan. I hope it works. I do not want to miss this appointment!
I’m going to take care of LiLi, my cat’s stuff first, I’m going to take a warm shower, but not wash my hair, eat a bunch of comfort food leftovers so I’m full and sleepy, absolutely no caffeine, no TV or anything stimulating, and I’m going to take some sleepy inducing meds. Not going to start or pick up any projects. Going to do my best to be in bed, lights off, listening to nature sounds or a podcast with a monotone speaker by midnight. Wish I had some milk, but I have another 10 days before I have grocery funds. *fingers crossed* Even if I don’t get enough sleep, I just want to wake up in time because I’m doing something I’m excited about tomorrow!
I wish you good sleep and productive waking hours!