Stop. Rest. Pace.

Why I rest so much!

Dear reader,

This is a post that accompanies my piece on the joy of movement by sharing with you how my autism and long Covid (specially the chronic fatigue) relate to one another. Here goes…

An autistic meltdown and a chronic fatigue flare when the pain hurts into my bones. They are quite similar to one another. A need to be in the quiet, the dark and minimal amounts of people surrounding me. The burnout that comes from being autistic and pushing for too long is not that different in how it feels - instead it's as though I need to sleep, even lifting my eyes and moving feels too much. Is that why some people don't believe me about what is going on?

The sense of bewildering denial that fatigue is a thing and that it is the same as being tired. The bonecrushing level. Lifting my arms feels like a mission. Moving my arms from the bed is difficult. Thinking more than a line or two ahead seems to leave me in a state of stasis. Exhaustion. The closest comparison is to how it feels when I have an intense shut down from being overstimulated, except from those I wake up refreshed and with these nothing much changes when I sleep. It's as though my body has forgotten to plug itself in for a recharge button. The battery is broken. I still hurt. An elderly battery that can no longer go past 10% and instead sits at a constant fast draining whereby things that normally would shave off maybe 1-2% of the charge leave me running at empty. But what is the answer?

Stop. Rest. Pace. 3 words. 3 small sentences that seem so simple and so easy. But when you try to do them feel beyond painful - agonising in all that they want from me.

Let's break them down.

Stop is simply that - stop everything you are doing until there is some energy able to come back into yourself.

Rest sounds easy enough, lie down and watch Netflix right? Wrong. That is too energy consuming. It counts as a high energy activity now unless it's something I've seen a lot before like Disney movies, Gilmore Girls or other similar programmes where I can quote them at well. Rest refers to the act of lying down in bed. Perhaps a meditation, a bit of breathwork, listeningn to some gentle classical music. It's never been so fortunate that my favourite kind of thing is well to use Max Richter's phrase "post classical": minimalist with a deliberate repeating pattern, often counterpoint, harmony and tonal style. Something that you might recognise as film soundtracks, since that is where it is often used. For me, this is the space where pictures come to my mind and I can map what I want out of these images - sometimes stories or painting or like watching silent moving images with the music telling me what should come next. A beautiful benefit of being so attuned to music - one of my wonderful autistic superpowers.

Pace. This simple four letter word is what my doctor has told me to do for Long Covid, my support worker has offered me advice on and even the psychologist I saw for my autism diagnosis told me to do it back those many months ago. But what is it? How do I do this thing? Surely spending some more time at home and not working is enough towards pacing to get it right isn't it? No.

Pacing is simply ensuring that there is about 30-40 minutes of rest between every longer activity (for me that is within every 30 minutes I spend about the same amount of time resting). As I said the resting is a lot more restrictive than what I'm used to, especially because pushing through the fatigue is ill advised now. Why? It makes the exhaustion and pain that much worse rendering me at times unable to do anything for several days -- post exertion malaise (or PEM) for short. Something that can happen when that fatigue comes back to haunt you up to 48 hours after the activity. These activities are not necessarily doing anything very much. For me right now examples that have led to fatigue lasting for several days include: going to the corner shop (about 150m from my house), buying some food, chatting with a friend, walking 0.2 of a mile to get some air, taking the bus and visiting the book shop. Each of these events at the time did give me that much needed pep that lasts for a few days but I have to question are they worth it? Will they make me worse?

Why do I ask that question, as isn't pushing a good thing? Well as this is post-viral chronic fatigue (another way of saying a kind of ME), then I could be making myself permanently or at least longer term worse and lowering my baseline. The good and bad days fluctuate. The exhaustion seems to grow rather than diminish like I expected. Is this new way of living my new normal?

Going back to pacing, it is where I do an activity and then rest. I've worked out that I have at most 5 hours of activity per day, which includes making drinks, food preparation, writing, reading, art, watching TV, work or time with friends. The other time music and at a push an audiobook can come in but everyhting has to be low-key. Figuring out what to do and how to make those low key times enjoyable and to stop sadness creeping in can feel like hard work. Slow and steady. A step at a time. As a friend reminded me, you only eat an elephant a mouthful at a time rather than all at once. At least this week, I have managed some reading because I am resting more thoroughly in the inbetween times. A gentle and slow rhythm for my days - not what you expect at age 37. In a way it seems to allow me to enjoy the positive traits of being autistic without hitting as many of the negative ones (e.g. meltdowns and extreme anxiety). Could this be a way that my body is saying this slower life is better for me?

Now to bring these musings to a close for today, as I have spent my 30 minutes writing this newsletter to you and its time for me to rest and sink under my weighted blanket.

Until next time when there might be more on art, books, films and writing. Any one of my special pigeons (obsessions), and I leave you with a closing question: what are your special pigeons?

Love and rest,

Autistic Special Pigeon