As my body takes me into yet another phase of quite undeniable post exertional malaise (PEM), I find myself wondering, and not for the first time, is there a direct link between PEM and the delayed emotional and sensory processing that comes with my autism?

Otherwise, I confess, I am a bit confused why I find myself back in the land of more severe symptoms, similar to what was going on during my crash last summer and which don’t match with where I was headed in my health lately or how much I have been improving, for weeks now, at holding a steady baseline without the repeated dips or crashes. All the signs had been so good, I had been managing to sustain a good daily routine and a regularly achievable level of physical activity, throughout the more demanding undulations of Christmas, without any signs of PEM. In fact I had been holding things together pretty consistently while various things were going on and thought I was now out of the woods into quieter January when my days have been more routine. So, why at the end of that month do I suddenly find myself back in the land of orthostatic intolerance, increased pain and enforced days of rest, why? Unless there are other than physical mechanisms (perhaps emotional, sensory or cognitive factors) at work beneath the surface? Has it got anything to do with the delayed reactions that are so typical of the way my nervous system processes things, after the event has passed?

Consistent with everything I have read about autism, I know I always have more sensory information to process, due to lack of filters, meaning my brain takes in every detail it can, first, and then sorts it all out later, which all takes extra time and energy. Big picture processing (which, contrary to popular opinions about autism, my brain actually prefers but this requires the time and space to go through all the details that make up that big picture!) certainly makes it harder to sort out how I feel about a situation in the moment it is happening, which means that it doesn’t take much extra stimulation for my brain to become more fatigued since it’s a matter of snowballing. In essence, I’m always busily collecting everything I need in order to gain a better view of that big picture and so a backlog of data steadily builds up until, suddenly, there is a huge mountain waiting for me to tackle it, like an enormous pile of unattended paperwork…all entirely relevant but requiring the admin time for me to sift through it all (an analogy that, I suspect, gives away my age). If I don’t make time for that process to occur, before life gets busy again, my body sometimes makes the necessary time and space in my life for me!

I may appear extremely calm, unaffected, stoic or even completely unemotive on the surface at the time of an event or a phase of more demanding circumstances, which gives the false impression (even to myself…and always to my parents and teachers when I was growing up, who always thought I was coping better than most…) that I am taking everything in my stride, perhaps even a little bit arrogant or impassive about it all, like some sort of automaton getting things done most efficiently. What they don’t see (and I now do) is that there can be many, many hours of delayed processing to come back to bite me, afterwards. I’ve seen that same pile-up occur time and time again after some of the most challenging and demanding times of my life, followed by some sort of crash phase, and it happens at the micro level too, for instance after one or two slightly more demanding days that I think I have got away with but with repercussions that come along afterwards. I do far better in life when I factor these alternating phases in, to allow for a buffer phase while I digest what I need to process.

My brain takes in a lot of sideways paths before it gets to where it’s going. This in turn makes it much harder to connect the reaction to the trigger. Also, overstimulation at the time of an event can give the impression of a completely different response (for instance, that I’m coping really well or even enjoying something), especially with the added factor of my ADHD brain getting a temporary buzz out of any of kind of excitement, even the least pleasurable kinds especially if they amount to a nice juicy challenge for me to overcome, which can generate dopamine and endorphins whilst I’m “busy being busy”, chemical responses that can then mask how my autism is truly responding to these very circumstances. The autistic response, which eventually comes along later, can seem disconnected, exaggerated or even wildly out of proportion to what is (by then) going on because “the thing” to which I am responding is now, most likely, somewhere in the rear-view mirror by a few days, weeks, months or even years!

Yes, my mental responses to unpacking what happened may even arrive weeks or many months further down the line, especially if there hasn’t been either the time or the safe space in which to process all my sensory data and emotions during events that, at the time, thoroughly overwhelmed my processing abilities as they happened, using up all of my coping resources.

Clues, in the aftermath, that I am still caught up in a state of processing overwhelm from an earlier phase might be that I spend a lot of time philosophically comparing “before and after” scenarios or marvelling at, or at least being overly fixated by, changes that have recently occurred. I might spend a fair bit of time contemplating other possible timelines, “what if”s, alternate scenarios and endings, especially near misses etc; things that “might” have happened if things had turned out differently (something I have frequently been told, by others, is a complete waste of my time but I can’t seem to help myself…just like I always consider all the zillion and one possibilities that might be about to unfold before an event even happens).

This might just seem like I have an over-actively philosophical side or a penchant for plot twists but it can really be a strong indication of just how many threads of possibility I’ve been having to try and hold steady lately, somewhere not so deep in my subconscious, and also the degree of unrelenting exhaustion and even trauma that might therefore have tagged along for the ride because coping with this much uncertainty, in a paradigm where you seem to be the only one who is really concerned by (or even seeing!) all the potential outcomes, can be isolating and traumatic. Yet, from my viewpoint, this isn’t “catastrophising” but sensible, if exhausting and requiring of steady and robust nerves. Sudden disabling exhaustion can be a clue as to all the different reins I’ve been having to hold onto lately in order to try and steer a team of wild and unruly horses (all the various probable circumstances) through the eye of the needle of some highly uncertain recent events so no wonder I tend to come out of the more demanding phases of life feeling threadbare and there is always way too much going on in my head!

And if you’re wondering why I do all this it comes right back to this ability I have to predict multiple probabilities well in advance, a commonly autistic trait, something which comes out of seeing a bigger picture than most people seem to be bothered with but which my highly detail-oriented brain won’t ever let me ignore, I just can’t seem to filter any of the data out…it’s the way I’m made!

When you are more fully aware of all the sensory data, and when your mind is capable of processing just so many connections between things, which means you then tend to be more inclined to use this propensity to predict multiple different possible outcomes, it can make navigating through life extra exhausting because you are always braced for a sudden change of direction. If anything is going on ANYTHING could be about to happen and that puts your nervous system on high alert, all the time!

Once the stimulating time has passed and the outcome has become more apparent, everyone else might be content to put it behind them and move on whereas you might still be reverberating with the conjunction of just so much information, which you can’t just put down “like that” because your brain feels compelled to sift through it all and make sense of it ready for next time…because you are probably already way ahead, deeply thinking into another dozen future outcomes!

In such a paradigm, everything is useful, nothing ever gets wasted…so your brain can feel like a giant data-crunching computer every time you go into any situation out of the ordinary, involving a lot of people or more than usual sensory input, basically whenever navigating life circumstances that are even slightly more complex than your quiet and predictable daily routine.

Which is why I for one, and I suspect so for many autistic people, take such solace from the predictability of strong daily routines since routine allows our nervous systems to calm right down and our brains and nerve endings to catch up, if not exactly take a holiday (because quiet time probably means even more opportunity to process). So, in my life, PEM can often feel like an enforced pause or “catch up” phase after a more stimulating time, partly to allow the necessary processing tasks to catch up with themselves but also to allow some sort of sensory recovery to occur and this might feel like, for a time at least, some of my senses become somewhat muffled and unreliable, perhaps a little less capable of keeping me well informed as to when its a good time for me to act, the result being that, to avoid becoming more accident and injury prone than usual, it’s sometimes best if I just stop pretty much everything for a short while.

The more I come to know that these phases will inevitably happen and accept them about myself, the easier I get to navigate the territory without becoming so fixated on it being a setback. It’s just not helpful to fall into the negative mindset that I’m “back” to being trapped in the house against my will because my body isn’t functioning as it should. I do far better owning that, at some level of my autistic being, it’s a choice or at least a temporary need for me to slow right down or stop.

Even the physical reactions to past events, the pain, can come later, maybe due to a delayed mast cell response (which can certainly be triggered by an emotional component) inflaming the tissues as the emotions themselves get unraveled (is one theory I have). A MCAS response, which can in turn trigger increased connective tissue laxity and therefore increased risk of injuries and maybe even POTs, can manifest as the physical symptoms of PEM that most bewilder because they are just so delayed after the initiating event. If ignored, because such pain doesn’t seem “logical” (as mine doesn’t right now!) this kind of response can quickly become a chronic situation or a much longer crash. Research shows that delayed onset muscle soreness (DOMS) is more prevalent with hypermobility and that recovery can take longer, requiring more pause between bouts of exertion and even treatment. This linkage points at there being even more reasons to take it steady and to utterly avoid further overdoing things, which for us neurodivergent folk may not take that much extra, especially when other (emotional, cognitive etc.) things are going on or when general fatigue feels more amplified than usual, because its a one-plus-one situation and any one of these factors can be the very thing that pushes us over the edge at an ill-timed moment for our nervous system.

Remember, a sensitised nervous system amplifies pain so injuries can happen oh so much more easily in these phases, particularly if you ignore the signs of sudden joint insufficiency or orthostatic intolerance. Pushing through isn’t the answer but complete lack of movement really won’t help either and has been shown to increase orthostatic intolerance, injury risk and pain. Adopting a mindset of daily “movement” rather than “exercise” can help and more easily adapts to vastly different levels of capacity at different times of your life, which means you don’t suddenly feel as though all routine and sense of holding a baseline is completely lost when capacity is lower; you just adapt and continue, at the right level for that moment. With this mindset, you can start to regard any kind of movement (for instance getting up from seated regularly and generally moving around your house, doing gentle chores etc,) as positive and cumulative; it doesn’t alway have to involve an “exercise” activity such as going for a walk or even leaving the house (and sometimes that’s exactly what your nervous system wants, in other words, some quiet time tucked away at home).

The key point is that adapting how much you “do” in the short term can help avoid the longer term phases of being housebound and badly limited by PEM because you literally can’t manage anything else for the time being, as happens when it is allowed to get severe (as happened to me last year). Keeping movement objectives relaxed and sustainable allows the nervous system to know it’s safe enough to kick back for a while whilst not stopping everything that makes your routine feel enjoyable.

Rebounds then tend to come around all around the quicker once you implement these much more prompt responses to a call, from your body, for more routine and rest. This time last year (moving house!) I didn’t have the option to stop and listen to what my body really wanted but I do now and deep winter is a fair enough time for my body to choose to do its big catch-up. In other words, reframing PEM as a period of highly necessary “catch-up” time for mental and emotional processing plus a certain amount of sensory unravelling helps me to deal with a temporary setback in momentum and make the most of it while it lasts.

Disclaimer: This blog, it’s content and any material linked to it are presented for autobiographical, general interest, entertainment and anecdotal purposes only. They are not a substitute for medical advice, diagnosis, treatment or prescribing. Opinions are my own based on personal experience. Please seek medical advice from a professional if you are experiencing any mental or physical symptoms that concern you.