Trying again

Insomnia and autistic burn out:: ORIGINALLY POSTED ON SEPTEMBER 27th 2024

Dear soft heart,

I wake in the middle of the night. It is 2 or 3 AM. I haven’t gotten up, or went to the bathroom yet, there is no clock or phone in my room because I keep it tech free, but I have been up at these hours so often lately, that I can tell how many hours I have slept when I wake up. I know if I have done 4 or less hours or about 6 hours by the way I feel. It’s only been 4 or so if my ears are ringing very loudly and I feel like glue is sticking me to the mattress, and my head is fuzzy. That and I feel hungover, like I have just had so many shots I kept track of them on my arm, crossing a line of sharpie across 4 to make 5, like I used to do when I was a teenager at house parties.

I know it has been somewhere around 6 if there is a rested quality behind my eyes, as if I kept them shut long enough that they have moistened just enough not to sting. I think quickly about how we are people who are always in relationship somehow, but we do not share these details with many people, or any. I realize I have never asked my mother how her eye sockets feel when she wakes up, although I would like to know such things. I ponder how we think we know people in their entirety, and there is a world within them we know nothing about even as we live our lives with them, side by side. This is both comforting and lonely to me all at once. I think about the time, on new year’s that my mom and I took a walk and I described all the people in the neighbourhood.

I said, oh yes, well a couple in their late 50s, early 60s live here. He goes to work in the morning and she has breakfast alone at this great big table that is just in front of the large floor to ceiling windows. She is sad, but they have grandchildren; you’ll see there’s a pool and a swing set in the back. And this makes her happy, they visit a lot, so it’s bearable, I think. And well, yes, this is where my old man friend lives, the one who gives me compliments and although I am not sure I would have liked him when he was 40, I like him now at 80. And also, that’s where the cute young gay couple live, and they relax and thaw and get friendly, when they realize they’re not being judged.

My mom was amusingly shocked because although she knew I walked, she didn’t know I had collected all these things inside of myself. And there in the middle of the night, I remember how we have universes and thoughts and memories that we keep to ourselves and that we are never done getting to know someone and what a beautiful thing that is. Ask more questions, I will remind myself.

I check the light that comes in at the very edge of the window, the half centimeter where the black out roll down blind does not extend to. The half centimeter that I still attempt to cover with a black out curtain over it, one that hangs atop the window frame, and yet all of this is futile, I can still sense the light, even though I did all the right things. If the single stripe of light that refuses to be camouflaged is a dark midnight blue, I know there are still many hours to go and this is going to be a long night and a long day. If the light is more cobalt, I made it through the worse of it, and I relax a bit. Whatever happens, at least, it’s nearly morning.

The night has always been fraught for me. I used to get panic at sundown when I was a little kid. Bed time was often awful. The separation of it all. The uncertainty. The need to do something that my body does not easily do. The fact that most people just enjoyed it, and I did not. The fear it held. Back then, I remember being tired, but I don’t remember it being as hard as it is now.

I am keeping a sleep log this year. We are on week 39 of the year now. I know because I count the weeks through the way I sleep. I am finding myself excited for the year to end. For what? I do not know. Knowing myself, probably because then I will feel the blank slate of the new year and go, okay this one can be better. But life is never just good or just bad. I know this. Even though I don’t always remember it when I do not feel comfortable or safe in my body because of illness or injury.

I have been awake 119 nights so far this year. I am missing a little over 100 hours of sleep for the recommended of 7 hours per night if I put it all together.

Why am I doing this? Is it an OCD thing? Probably. I don’t care too much. It makes me feel in control and it doesn’t bother anyone else. It is the first year I keep a sleep log. Well, the first year in a lot of years, because the last time I did it, I would be so frantic about it that I was always freaking out if I didn’t have enough sleep, worrying I was going to have the next hit disease. But I think then, I slept more. I was probably on pills to sleep, which helps, but then leaves you in a shittier place than where you started off. I am probably sleep deprived from a good year of nights awake since acute autistic burn out began.

I google at some point, “how much missed sleep do you need total in a few months for sleep deprivation?” The data it presents me is unclear in the sense that there seems to be no one uniform answer - sort of like if you asked google was is right and what is wrong, or what should I do with my life, or when will I be okay or am I gay?

They talk about how you can have signs of sleep deprivation after just one night of missed sleep. They talk about how being awake for 24 hours straight kicks it off. I remember the one time I stayed up for 3 days and 4 nights straight and had to go to the hospital. It was in May of 2017 during the beginning of ativan withdrawal. I remember the various other single nights and days wherein which I didn’t even sleep one hour; those were the worst days of my life. Then I began to sleep for 10-20 minutes a time, small naps throughout the day and throughout the night, often in a moving car, like I was a fussy toddler. I remembered in early withdrawal after they gave me some ambien to wean off the ativan with, and also some trazodone, and I would still not sleep. Being awake while on ambien feels like dreaming, or maybe like you’re completely dead and unaware, and just a ghost, stuck in between here and the next place you’re heading to. Am I dead? I would ask my ex partner. Are you sure? I would say when he’d say no, as I would pinch myself. Okay, I think I feel pain. And then I would go to the tap, and put my hand under the water as if it were a glass of water and wait for it to fill. I would think, very smart of me. Filling up a glass of water. Very very smart. I remember a friend telling me once she was so high on ambien, she believed her husband had loaves for hands. Just bread loaves. It makes me smile, even now.

But that was then, and this is now. And now is better, even though it is still hard. Withdrawal though was concentrated no sleep time. Autistic burn out insomnia is long and spiky in intensity - dependent on how much stimulation I got the day before, or if I am in PMDD. It is like I have a newborn, but that newborn is me.

I often try to see if I absolutely have to pee. Maybe if I don’t get up, I will fall back asleep easier. I only willingly get up nowadays in the night when I know for sure it’s doomed, when I feel like it is 9 am and I have had three coffees already, as if my body is saying, common, you’re going to be late for the day. Not that I drink coffee, clearly, that would be a giant problem for me. And still, my cortisol bursting through my bloodstream says, it is time to do the things - all of them. I remember then to take my adrenal supplements - I must have missed a few days and now those two little beans that sit atop my kidneys, they have time blindness, no, actually, they are jetlagged. In Paris.

I notice first my shoulder and my neck. I do a chin tuck and see how stiff I am. Very. Then I rock my shoulder front and back and try to assess my healing. Does it hurt more or less than earlier when I fell asleep? Yesterday afternoon? This step comes at this point in time, if it is not what woke me first.

I feel discouraged. It’s so expensive to get injured. I feel like a burden on those who care for me. And I can see the stress it causes to have to take on another human as your own self. And it’s still not healed. I am trying to heal it. I am doing the exercises and I go to the appointments even though they often overstimulate me and then keep me up at night, like right now. And still, I wish it never happened. I feel so stuck. I want to go on adventures. Where would I go? I let myself picture scenes of Hawaii. I see the surf, high and strong. The air is fresh with seaweed and mist. Shaved ice is in my hand, without too much sugar, just perfect. I feel the breeze on my skin - it’s like the wind is rubbing my arms like a lover would - tender and present. It crashes into me like the waves do at the shore. I notice the sand between my toes. I am one of the rare people who love that sensation - the proof of a day well lived. Now, in bed, I wiggle them.

I am often angry at this point. About something. Anything. The fact that I can’t sleep for one. The fact that I would do anything to sleep. I’d be such a better human, if I just slept. My body would heal so much easier if I just slept.

I am impatient with my healing and this card is the only card I pull for days, even though I shuffle very well.

Sometimes I stay quiet and I am resigned. Whatever, I think. No use fighting it. I imagine myself in some sort of net that God has me in, it is not unlike a trampoline material. It is somewhere I just lay in my mind’s eye, kept in the care of God, because I can’t figure anything out right now, not when I don’t sleep. Sometimes I let the rage take over until it is done and I start to think about something very random, a teacher from high school, who said a word funny - I repeat it in my head. Mack-cheekan. I would like a Mack-Cheekan. The french coming out in his English. It is always a good sign if I start to write a book passage in my head, and then I am relieved, because my emotion has passed.

The next day is hard. Everything hurts - joints and muscles, because of my injury yes, but shooting pain too sometimes. I have to get my knee brace for my knee joint is unstable right now and sometimes when I move, like a normal twist or turn, it pops out. I listen to older people talk, people in their 70s, in my writing group, who say their collagen is running out and I realize I have more in common with them than my peers, at least right now. I have brain fog. I don’t have energy to make more than my breakfast meal. I don’t get much done - writing wise. I wish I could go for a bike ride on my bike, but I would not make it very far and would have to call to get picked up. On these days, I wait until nightfall, for then, I’ll get to try again.