As said before, I dream a lot.
It doesn’t take much for me to dream. I’ll fall asleep briefly, for a few minutes, and I dream about this adventure I have, with a hot air balloon, or a submarine and lasersharks (yes, I actually do dream about lasersharks).
I dream about plane-crashes — either with me on the plane or watching it. I dream about murder and death, I dream about zombies that eat my dog, I dream about swimming in a vast ocean with no rescue in sight. I dream about people chasing me, explosions, car-crashes. Murder death kill.
I don’t have to sleep anymore to dream. I only have to close my eyes and a kaleidoscope of adventures happens right in front of me. I’ll see a forest with bunnies, racing ladybugs, Batman (with or without Robin, filmversion or comic or both at the same time). It blurs into one big adventure and separates into individual storylines again.
I watch from a distance and then get sucked in. It feels like how I used to look into the water at the swimmingpool, and then, eyes open, dip my face into the water. Watching from a distance, and then getting sucked in.
Sometimes it spits me out, and I rudely awaken. Sometimes, I’ll float in there. In the kaleidoscope of adventures.
I used to have hobbies. Perhaps too many of them, but I had them. I used to do them, had fun with them, enjoyed them.
And slowly but surely that stopped. At first I did it less and less. Maybe even didn’t do one or two of them alltogether anymore, to make space for the others. I tried to prioritise, do the ones that brought me most fun. I tried to fit it in, despite the fatigue and the illness and everything else, because I want to do it. I want to have something relaxing, something I enjoy, something just for me. But at some point, I had no more room left. No more energy. No more clarity.
I stopped drawing, chrocheting, photographing, hiking for fun.
Sometimes people comment on how I ‘quit doing’ it.
But I didn’t quit.
I bled out.
I dream a lot. Usually nothing too bad, just ‘exciting’, like an over-the-top action movie.
Increasingly, I dream terrible things. Not necessarily nightmares, more emotionally taxing dreams. Most of it doesn’t scare me, no monsters or horrors. It usually involves people I care about dying or something terrible happening to them. I don’t wake up from those with my heart racing, I wake up crying. Tears streaming down my face, me trying to catch my breath. It feels awful.
The feelings last all day, sometimes longer. I find it hard to shake off that feeling. I find it hard to shake off any dream, the lines between them blur, and the one with reality. Sometimes it feels like I live from dream to dream, and reality feels… blurry. Just beyond my grasp.
What does that say about my sanity?
I try to stick to a fairly strict sleep schedule. It seems to help a little. I take more care in sticking to the nighttime sleep (from midnight to 8) than to the naps (an hour between 12 and 14, and an hour between 17 and 19). I need to try and stick to the naptimes more.
I think it helps to nap before I get really tired, before I get a sleep-attack. Of course, I can’t prevent the yawning (that’ll start an hour, maybe two, after getting up), but hopefully, I can smooth everything out a little. If I take naps, I have less automatic behaviour epispodes. I get less violent sleep attacks. I do, however, get more violent ones if I take naps for a few days and then skip them.
Once I get used to it, everything seems to get worse if I skip it.
So I fight it. I hate how I absolutely need it. How it chops up my day and makes me stop doing whatever I do and sleep.
I don’t like to sleep.
I used to love it…
I lost some of my spoons. In the most literal sense. I think I threw them in the bin during an episode (or multiple) of automatic behaviour. Sometimes these episodes last a few seconds, sometimes minutes, or an hour.
I don’t really know for sure. Time flies a lot for me, even when I feel bored. Or maybe especially when I feel bored. I just zone out and then suddenly, an hour passed. Or two.
I find stuff in weird places. A not-so-hot chocolate in the fridge. A book in the bathroom. Gloves in my bed. Currently I don’t know where I left my small pair of scissors.
And sometimes, I forget to close the front door…
I mentioned I have problems with planning. It mostly comes down to not having any energy left after doing what needs to get done to do any planning with. Productivity and all sounds nice, but you need to have something to go and do all kinds of productive things with.
I try to make things easy on me so I don’t need to spend energy on reacting to surprise events. And that requires planning.
I try. I write things down (I have a bulletjournal) and that helps. But stuff still wooshes by me. I made overnight oats so I don’t have to worry about breakfast. I made a few of them at the same time to preserve energy.
And then I forget about them. Out of sight, out of mind. Safely in the fridge, waiting for me to eat. And I still forget. It happened again this morning.
It might help if I stick a post-it on the fridge to remind me. It might work, or my brain will consider it clutter and filter it out. It does that a lot. It also ignores the drink next to me in favour of telling me to get a new one. I think, because I don’t always remember getting the first one or making the second one.
Setting reminders on my phone doesn’t work either (they drive me crazy and make me very anxious). I need to find a way that removes the pressure, not add more.
I don’t need more pressure.
Usually, I fall asleep quick. Sometimes a minute or two, sometimes it takes up to fifteen minutes, but it never feels like very long fifteen minutes. I’ll go out like a light, most nights.
And I dream, and then I wake up. Usually a stressful dream. I’ll need to catch my breath, calm down a bit. I’ll check the time and maybe twenty minutes have passed since I went to sleep.
The cycle repeats itself several times per night — until I get a few hours of non-clock time. I don’t feel I obsess about the clock, I just want to know if I should stay in bed, or maybe get up and have some tea. Does it — timewise — make sense to try and get some more sleep? Most of the time it does. So I stay in bed, eyes closed, unsure of how much sleep I get in that time.
My fitbit tracks some of this info, and only rarely does it catch my ‘awoken’ moments. I think it has something to do with not staying awake for very long. I’ll wake up and fall back asleep quickly. This may seem like something unimportant and not of much influence. But it does matter to me, and it influences me greatly. Those moments — brief and rude — rip me out of my dream, out of my sleep. They break into that important time where my brain might finally get some rest.
I don’t have this every night, most nights. Some nights worse than others. The amount of times seem to correlate to the number of sleep-attacks I then get during the day. The more I wake up during the night, the more times I zone out during the day and don’t know what I did.
Even on a good day I have several attacks of extra-sleepiness. I feel drowsy all day to begin with, and these attacks can come on so violently, so surprisingly. They rip bits and pieces out of the waking hours of my day. They destroy all possibility of seeing something through, of finishing whatever I started that day. I could try and plan around these attacks, and I did try. But when it comes down to it, I can’t really plan around it. I need all my energy and my fighting just to get through the day and do the bare necessities, like eating, walking the dog, buying groceries, personal hygiene. And just for the record, I don’t wear make-up and I don’t even brush my hair daily.
I fill the rest of my time with staring at the wall — or at least, I think I do, I usually have no or little memory of roughly 2 to 3 hours of my day. In between I’ll chat with some friends online — because how else do I keep up my social contacts? — and maybe do laundry or clear out the dishwasher.
My brain has reduced my life to bits and pieces, to a shell of its former self. It all sounds rather depressing. Good thing I don’t have the energy left to feel depressed about it.
It sounds so silly, that I didn’t know I felt this sleepy, but in reality, I’ve felt like this for so long I didn’t know it could be different. I still don’t really feel like it could (and maybe it can’t). I say I feel tired, and not up to do stuff. But actually, I just need sleep. A lot of it.
This only became clear to me recently, how much sleep I really want. How much I really need it.
I get cranky / moody when I need to sleep (or when I need to eat). My inner four-year-old comes out and DOES NOT WANT TO NAP. I have some difficulty with forcing myself to take the nap anyway. One side of me acts like the oversleepy four-year-old and then the other has to act all adult, and I don’t want to adult all the time. (Please don’t make me adult…)
I get obsessive when I need to sleep — and also when I need to eat (happens a lot). I usually snack and then nap.
Sometimes I feel fine one minute — or some form of fine anyway — and then suddenly, rapidly, I can’t stand on my feet anymore. I start swaying like a drunk person, sometimes more, sometimes less. My eyelids falling shut, my eyes rolling backwards. In my experience, others don’t notice it that much.
Others don’t seem to notice how sleepy I feel, in general. Sometimes I resent them for it, but honestly, I’ve fought so hard to stay awake for so long, I didn’t even know I felt that sleepy. I didn’t know that the fight going on inside my mind meant I had pushed myself too hard and too far. I have started to learn though.
I used to think more coherently. And I used to express myself more coherently too. Writing things like this takes a lot of effort, and a lot more time than it used to.
I wish my days had more substance. More fun. I get up, I eat, I walk the dog, maybe some groceries, maybe some chores, and I eat, and nap, eat some more, walk the dog again, and on a good day, I take a shower. And that doesn’t happen every day.
I don’t have a job, and I barely get by, energy-wise. I don’t exaggerate (much), and I don’t claim I don’t do anything. But it doesn’t feel like doing much. It feels like barely making it through the day, every day. Finding it hard to enjoy things, and not because I feel depressed (I think I’d know it if I had depression on top of everything else), but simply because I feel so sleepy and so tired.
And everything becomes a fight to stay awake.
When it comes to cataplexy I hear that ‘you’ll know it when you have it’. I also read that cataplexy can present itself with (very) mild symptoms and wonder, how would you know?
Recently I’ve had a few incidents which make me think I might have (mild) cataplexy.
A few times something small startled me and my knees and lower legs went wobbly. They suddenly and briefly felt like ‘not my legs’. I didn’t actually fall down and spent several minutes unable to move — that would have made it clear, and it would have put me straight into the ‘you know it when you have it’-category. Instead, I caught myself and the feeling went away. The last time I had the feeling my eyes closed, but I don’t really know.
Another time, I laughed and my jaw felt tingly (not pricking like when your leg falls asleep) and almost like I had a shot at the dentist. It didn’t hurt, it mostly felt ‘not quite there’ and heavy. It lasted maybe three seconds.
Another time I sat on the sofa, with my ankles crossed and watched something on youtube and laughed out loud, a lot. My legs felt funny, very tingly (not pricking) and ‘not there’ and when I tried to move them I couldn’t. It has some similarities to what I feel when I fall asleep on my arm and then my arm pricks and tingles and whatnot, except, it doesn’t hurt. At all. The sleeping on the arm hurts, or at the very least feels very uncomfortable. The thing with my legs, didn’t.
For me ‘you know it when you have it’ has the problem that I can always find another reason.
I could have not eaten well that day (I did, but maybe I should have eaten more and better because I had one of those days where the default amount doesn’t do it. Could happen!).
Maybe I got up to fast, and my bloodpressure couldn’t keep up (Not really, I didn’t get up shortly before in any of the above situations.)
Maybe I just didn’t sleep well (ok, I kid. Really.).