Hibernation

By all accounts, hibernation is a painful process.

Mythologised by hopeful humans, we read it as an idyllic time for animals, when they get to eat as much as they like, pile on fat, and then slumber joyfully for months, missing the winter entirely. No cold, no depression, no dark thoughts. Just endless, delightful sleep. Every hibernation is a fluffy dormouse or a podgy black bear curled in its den, cute and inviting and perfect.

"Grizzly just wants to sleep" by Corin Garnett-Law is licensed under CC BY-ND 2.0

Except it’s not. Hibernation isn’t really sleep. It isn’t really wakefulness. It’s described as an ‘energy saving period of extended torpor’ – which sounds a lot like depression or a bad bout of poor executive function. It’s a kind of waking nightmare of sleep paralysis, from which you have to rouse yourself every now and then to make sure you don’t die – ironically, so you can get a chance to sleep.

That resonates with me. Winter as a waking nightmare. Winter as a time when you’re trapped by the cold and the weather and the limitations of your own body and mind. Winter as a time when you lie in bed or sit on the sofa desperately wanting to do something, but just unable to move. It’s an inability to get the car started, an inability to strike a spark to make a flame. The world is there, but you can’t touch it, grasp it, and let you take it in its flow.

Today the weather is bright and sunny. Today is the first day in many months when I’ve felt able to write a blog post, the blog post I’m writing now. Today I feel able to put away piles of washing, do the washing up, make phone calls. Ironically, I also feel under the weather, so while my mind is willing my body doesn’t agree. Coughs and colds come hand in hand with grim weather and shorter days.

So, today I have woken up enough to realise that I do hibernate through winter. I don’t hibernate like a dormouse in a children’s story. I hibernate like a mammal who puts its head down and just tries to survive through winter, while the demons batter at the doors of its mind. I wake up every now and then, sometimes enough to scream at the darkness, sometimes enough to feel that I might be able to face it. Sometimes I look up and realise the days are getting longer. Sometimes I feel like there will never be long summer evenings of benevolent warmth.

Pancake day, Easter Sunday, May Day. These things will come, with creeping slowness, with creeping inevitability. When summer is here, I will no longer be able to imagine the darkness and cold. I will be alive again.

Little Things

Photo purely for decoration. This is Florence.

When I'm low on spoons, it's the tiny little things that are hard. This week I'm low on spoons. The end of the school year, the end of my 11 year old's time in his amazing Autism Resource in primary school, school trips left right and centre, endless migraines.

So it's the smallest things that are hardest. Why? I don't know. I just made myself a cup of coffee, but I was almost out of skimmed milk. There's a new bottle of skimmed milk on the top shelf of the fridge, but getting it down and breaking the seal is just too much. Physically I could lift it down, I could break the seal - but mentally I can't. Mentally I'm unable to reach out and start a new thing, to move on from the old bottle to the new. I can walk into the kitchen, fill the kettle, get a mug, and put instant coffee in it. (Thank god I didn't have to open a new can. Sometimes I can't have coffee if I need to open a new packet, because it requires finding a packet, finding scissors, finding a peg to put on the open packet afterwards.) I can pour on the boiling water, open the fridge, add the milk. But I can't open that new bottle of milk. Sitting here, writing about it, I don't understand myself.

Outside, the rain is tumbling down. The world is irritating me, from the very large to the very small. The band of my fitbit, no tighter than usual, is cutting into my wrist so much I almost can't bear it - but I can't take it off because it won't track my steps, and I will feel as if I have no control over my day. The carpet before me is sprinkled with dirt, but cleaning it would require going and getting the vacuum cleaner from where it lives, attaching the tubes, plugging it in, and exposing myself to that awful drone. I can't do it.

My bra strap is irritating me. My dressing gown is irritating me. I lack the ability to go and change my clothes. It's not laziness. It's a kind of mental paralysis that perhaps you can't understand if you haven't experienced it. My hair is irritating me. I've managed to brush it, after a week, but it's still catching on the chair behind me. I'm more likely to throw something than move the thing it's catching on. Why? Who knows.

But I can write a blog post. What's that all about? I have no way to explain why I can write a blog post but I can't open a new bottle of milk. Why I can write a blog post but I can't engage in online conversations. If I can't understand it, I don't know why anyone else should be able to. If you can't understand the reasoning, at least try to understand the effect.

The Repeat Prescription

It’s one of those days where I wake feeling so low, so anxious, I feel dizzy. The feeling of it is like a poisonous flower blooming in my chest, somewhere just under my ribs, pushing up into my throat. Everything is hard. Decisions are hard. I leave lights off because the decision to press the switch is too much. I go into my routine, put the coffee on the stove, start to make my lunch. Although I’ve been awake for an hour it’s been impossible to get out of bed until now. Now I’m up, I’m clumsy and things spill. I forget which spices I always put in my lunch. I forget where I am in the process, and find myself staring into an open cupboard when I’ve already got the bowl I need.

The cover of one of my books*

I have three antidepressant pills left. I should have organised my repeat prescription a week ago. But that’s another mountain to climb. You’re not allowed to phone the doctor for repeat prescriptions. But I live five miles away from the surgery, I don’t drive, the bus is a mile and a half away, infrequent, and a whole social challenge of its own. I could post my prescription, but the post box is further away than the bus. The post office to buy the stamp is further still. And I haven’t mentioned the problems I have with posting things. It’s some kind of autistic issue. An executive function issue, the crippling problem with communication. That old thing. But I can’t phone for the prescription because even if I explain that I am autistic, I have problems with executive function, I don’t drive, it won’t be enough. Explaining will be excruciating; and I’d have to explain every time I phoned. Using the phone is an excruciating experience in itself.

I have three days of antidepressants left, and yet again I’m going to have to rely on a family member with their own crippling problems to sort it out for me; to physically drop off the prescription and then pick it up in a few days. I’m going to run out of tablets. I’ll feel this crush of anxiety and depression even more strongly, and sorting out the problem will become even harder. Taking the walks which help me feel less depressed will be harder. It will be harder to make the decision to get out of bed, to switch on a light, to speak, let alone to organise the impossible task of getting the prescription I need.

This is being an autistic adult, a woman with a Masters degree, a writer of novels, a woman who is bringing up three beautiful children, who can be eloquent and persuasive and can turn her hand to many things. It is running out of antidepressants, because communication is so damn hard.

* re the photo. I don't have the wherewithal today to search for representative photos, creative commons rights, and so on. Nor to work out how to write this as a picture caption that doesn't mess up the formatting of the entire post. So this is the cover of one of my novels, instead. It's a good book. It's available on Amazon.

The Toothbrushing Breakthrough

After twenty years or so of adult life I feel like I’ve finally cracked the whole ‘brushing your teeth’ thing. For context, my dad was obsessive about this; making us brush every morning and evening and take fluoride pills too. Brushing was almost a religion in our house. It was never missed.

But when I started taking responsibility for my own brushing it just drifted into nothingness. After all, my teeth don’t ever feel that dirty and I’ve never had a single problem with them. No fillings, no work, nothing. Every time I went to the dentist they’d say, ‘You’ve got no problems, but you should brush your teeth more often.’ More often than, for example, once every couple of months. For the sake of my gums, he would say. And I’d nod and agree, and then go home and just wouldn’t do it.

Photo from Flickr by William Warby. Creative Commons..

I hadn’t really realised that brushing is a sensory and executive function nightmare. Some autistic people (like my dad) are great at routines. Some are not. I’m awful. I have to keep to rather nebulous seeming routines; if I don’t get my after dinner cup of tea within about ten minutes of finishing my dinner, for example, something builds up in me that makes me want to jump out of my skin. But I find day-after-day self care routines oppressive, and terribly hard to stick to. So that, combined with the sensory hell of the brushing and the intense sting of the toothpaste, meant I would just never do it.

Then my husband got an electric toothbrush. I’ve always resisted electric toothbrushes. It seems like an unnecessary waste of energy. But – BUT BUT!! – I discovered a wonderful thing! It does all the thinking for you! I never realised my tooth brushing issues were to do with executive function, but I swear they are. How long do I brush for? Am I doing it right? Too long? Too short? Am I focussing on the right areas? Brushing hard enough? Softly enough? It doesn’t matter! This thing lets you brush one quarter of your mouth, doing all the work for you, and then it vibrates to tell you to move on to the next quarter. And so on, until it’s all done. I don’t have to worry about anything. The only sensory issue is getting over the vibration, which is not great, but I’m getting used to it, and it only goes on for a set amount of time. I’m now a toothbrushing queen! I brush every evening without fail. I’ve been doing it every night for about two months now. I haven’t missed a night. My teeth feel clean all the time.

And this, dear children, is why knowing you’re actually autistic is such a wonderful thing. Because it gives you context for why you fail at the simplest things, and helps you work out ways around it. And we all lived happily ever after. The End.