Autistic Fatigue and Exhaustion

I had been agonising over what I should write about this week. I have a few different things in the works and lots of other potential ideas that I haven't started exploring yet, but none of them were 'happening'. It was like my brain, or at the very least my blog, had ground to a halt. I considered not publishing a blog post this week, but reminded myself that I'd made a commitment to post every Monday. I wanted to honour that commitment. I felt increasingly frustrated and disappointed in myself, until I realised what was going on.

I was exhausted.

As someone who naturally tries to battle through an obstacles without giving it a second thought, I simply hadn't noticed. In part, I am bad at discerning my own feelings and sensations. But soldiering on is also how I coped with life throughout school and university, until I pretty much had a breakdown. I don't tend to realise I've pushed myself too far until I collapse.

So, in lieu of not posting this week (notice that even having recognised the above, I am still too stubborn not to post at all), I am going to write (briefly, I hope) about what being utterly exhausted is like for me.

A couple of months ago I took a Twitter poll and asked autistic people whether they 'experience fatigue (that isn’t because of a health condition)'. The options were 'Yes, regularly', 'Occasionally', and 'No, very rarely or never'. Out of the 86 responses, nobody said rarely or never. 76% said regularly.

It's difficult to know how people define 'fatigue' and, of course, everyone's interpretations will differ even if marginally. But 'fatigue' is certainly different to 'tiredness', in my books at least. Tiredness is when you've stayed up late and are dying to get into bed. You're in a boring meeting in a warm room and can't help stifling a yawn. It's the end of the day and you feel dozy in front of the TV. But fatigue, the kind I'm experiencing right now, is different.

I wake up and feel unrested. Getting my brain out of 'sleep' mode and into any kind of action feels like dredging the bottom of a lake. It's heavy and slow and muddy. My eyes cross and blur because they're so tired. I can't concentrate very well. I try to write but it's too much for my brain to focus and create anything of any quality. I rest my head back for a moment and notice how my body longs to lie down. But I don't want to sleep through the day because, according to everyone and their dog, a good routine is the key to good sleep. So I try to distract myself with things that aren't so taxing on my brain. I watch TV.

I am reminded of Dr Tim Cantopher in his book 'Depressive Illness: The Curse of the Strong' (which I highly recommend) advising TV as a way to distract from rumination and to rest the brain when you're ill. I'm not depressed, but the kind of fatigue I'm feeling isn't dissimilar to that which I had when I was depressed. Dr Cantopher recommends 'an undiluted diet of Australian soap operas, if you can stomach that sort of thing' as they're like 'mental wallpaper'. However, I want to do something productive (see note on stubbornness above) so I often watch documentaries because 1. I enjoy them and 2. I want to feel that I'm at least learning something. Don't tell Dr Tim.

When I get hungry (or rather, when I know that I must be hungry although I don't want to eat because I'm tired and nauseous), I stare blankly into the fridge and realise that I have very little food. What little I do have requires me to make it into a meal, and I can barely concentrate long enough to name the food items, let alone whip them up into something palatable. I open a can of tomato soup and heat it up.

I am painfully tired, physically and metaphorically, and if I don't distract myself while I go about my day, I will probably just lie down on the floor and stop moving. So I listen to podcast after podcast, for many hours a day. I accidentally become a true crime expert.

I know that gentle exercise is important for energy, so after my soup I go for a walk. I decide to pick up some groceries that my brain can make sense of so I walk 20 minutes to the shop, buy a few items, and then... Oh. I've overdone it. I thought a trip to the shops would be gentle enough but apparently not. I literally shuffle home, wondering with each step whether I could just have a quick lie down on the pavement and rest. My body feels like it can barely move and my lack of physical strength to continue means that my mental strength has to kick in in order to force it. I will myself to get home. Finally, I push open the front door, drop my back of shopping, and fall onto the sofa, coat and boots still on, and fall asleep.

An hour or two later I come round and remember the shopping. I feel a bit better after a rest, so I put it away and make a cup of tea. By now it's pretty late in the day and I feel angry about not being able to do the things I want to do. I want to be able to write, and make healthy meals, and go to my dance class. I, unhelpfully, start to berate myself for not doing more. Am I being lazy? Am I not trying hard enough? Deep down, I know this isn't true. I'm trying my absolute hardest, all the the time.

I try to do something useful, but mundane enough for me to manage, like wash the dishes or put on a load of laundry. My boyfriend gets home, we make dinner (or rather, he makes dinner while I am sous-chef, chopping vegetables while I support myself by leaning on the countertop) and we chat. Of course, I'm too tired to chat really, but my adrenaline is kicking in around now (at 8pm... great) so we talk and watch TV until 10:30. I'm now a weird mix of wired and tired. I fly between so tired my limbs can't move very well and jumping up and down - my body is clearly very confused.

I have a snack and do all the usual pre-bedtime routines. I collapse into bed, exhausted, and 10 minutes later my boyfriend is fast asleep. But I lie awake. I toss and turn for an hour, my body aching but unable to shut off. Eventually, around midnight I drift off into restless sleep, and the whole thing starts again.

I'm not entirely sure how I've got myself into this particular fatigue slump. It happens so easily, without my realising. It could be the intensity of Christmas, too many social events in a row, a holiday to a new place. These can be thing that I enjoy, yet I still get exhausted afterwards. These days I can usually catch it before it gets too bad, and rest so that after a week or so, I'm back to my 'normal' level of fatigue. By which I mean, I can do some writing every day and make myself meals that aren't from a can and walk further than my local supermarket. I still get tired every day, but it's not so disabling. But this bout has lasted several weeks now and I've even taken sleeping pills a few times, which is something I've never done before. I simply wasn't getting to sleep and my health and ability to function was declining every day.

On the upside, with the aid of the pills, I'm back in a reasonable-ish sleep routine now and am hoping that it continues to improve. I'm trying to worry less about this slump and be kinder to myself about my tiredness. I remind myself that pushing harder doesn't mean getting better faster. Maybe I'll watch some Australian soap operas.