I’ve been rather quiet as a blogger these last few weeks and part of it has been the fact that I have been experiencing a flare-up of symptoms along with intense Post Exertional Malaise in tandem with beginning the course of hypermobility-focused physiotherapy I previously mentioned. The very factor of going into the city once per week, having quite a long session, eating out in town for convenience afterwards (but sometimes its own source of provocation…) then coming home through all the late afternoon traffic, even though I’m not the one driving, has had the effect of exhausting me in a way that only someone who has ever experienced PEM…which is quite different to “normal” tiredness…will truly understand. Though the treatment progression is going really well and I continue to be optimistic, I’ve had to prioritise my energy for that, not for this.

Another, big, part of of why I have pulled back from writing is that prioritising the foundational objective of calming the autonomic nervous system (ANS) has become its own goal as part of the long commitment I’ve made to this treatment plan, however long it takes, which I expect to be many months. This is going to be a long haul of hands-on treatment combined with almost total re-education of the way I use my body, along with no small amount of emotional work and both my treatment provider and I are clear that settling the nervous system down, first, is going to be absolutely necessary. I need my nervous system on board and I also need it not to be trip-wired by every new step along the way. Its a conclusion I had reached myself, even before embarking on this treatment plan (moving house recently was a big part of the effort to create a foundation of stability for my nervous system) and, now, it feels more important, even more top priority, than ever to continue this effort…as I suspect it is for anyone else looking to make progress with a chronic health situation. If you keep experiencing setbacks, consider that this thing could be your tripping point!

Anyone dealing with chronic health issues will already know the very high degree to which the ANS has its fingers in every pie. There is no separating the nervous system from the various different aspects of how the body has started to misfire over the years, cumulating in whatever burnout or crash led you to where you now are, however much other provoking factors (such as a virus or accident) might have taken the brunt of the blame because, after all, what makes one person respond to those things differently, more devastating and lastingly, than the next person if its not the nervous system? One of the most classic manifestations of this ANS involvement, in my opinion (since it is universal to just so many chronic conditions) is Post Exertional Malaise. PEM can occur for one of over a dozen different reasons that I can hastily think of, many of them overlapping, the net result being as universal as the numerous triggers for it can be diverse…severe, crashing exhaustion that is quite unlike other kinds of exhaustion, easily triggered by what seem to be the mildest kinds of energy expenditure, and which may come and go, on and off, for months or even years once it becomes embedded in the pattern of your illness, as has happened to me (and, right now, I am into yet another phase of it). At least every time it happens I learn a little more about the why and how it happens in my case!

Factors that may tripwire the ANS into this behaviour can be relatively obvious once you start to notice them…things like “overdoing it”, “pushing through” something that hurts or provokes any amount of muscle fatigue, brain exertion or emotional trigger, or even something more subtle such as environmental variables (weather, light quota), due to demand avoidance becoming activated (that one can be a big PEM trigger in my case because when some part of me doesn’t want to do something it can become really resistant in some very creative ways), exposure to allergies or intolerances, the need to mask or force yourself to prioritise areas of relative deficit instead of areas of comparative skill when navigating a world not designed for your neurological differences, and so on. They might also include sensory provocations that no one else is even aware of (heat, light, smell, the feeling of a space you are in), social anxiety provoked by the mildest of situations or (for you) the most provocative such as large family gatherings, by the presence of mould or recent exposure to it, or (for 100 different reasons, personal to your particular history) any kind of exercise, effort or exertion that might seem mild to someone else but which tripwires some hidden cellular memory potent enough to send your body into profound fear that history is about to repeat itself, perhaps a fear of the kind of activity that precipitated the original burnout event (which your body will have remembered…you can be quite sure of that). Even the factor of constantly seeking solutions to your chronic state of health can send you into a state of fight or flight sufficient to set PEM into motion if it is all you ever seem to focus on. Unsurprisingly, in light of that list, it’s clear that undiagnosed neurodivergence is a hotspot itself for provoking the kind of PEM that can start to look like a chronic health condition when precipitating factors are overlooked for long enough over the course of a lifetime. Another one related to this, unrealised hypermobility (often associated with neurodivergence) could have been putting your body under extra strain with every movement you have ever made in ways that start to compound and exacerbate as you age, especially post menopause as collagen weakens, making the most everyday of movements, or even the supply of blood to all the the wide-spread areas of your body at the same time as moving, deeply exhausting to your system given all the extra effort and safeguards it is having to put into place to keep you functioning (for instance, constantly hypertonic muscles in an attempt to increase blood pressure and compensate for lax connective tissue). All or any of these factors can play a part and take their toll.

Realising some of your particular triggers is the beginning of finding the way out of it. You can’t change everything overnight but if you can reduce your overall burden of triggers to PEM you are on your way to creating more stability in the ANS and this is foundational to an improvement path that might include more “physical” rehabilitation (and yes, even if hypermobile, this can be tackled with the help of a knowledgeable physio) further down the line…but a more stabilised ANS has to come first.

Making it utterly necessary that, at some point, you stop prioritising the merry go round of your usual behaviours for long enough to spend time with your nervous system and watch what tends to trigger it and then take those micro steps to make it more comfortable, make different choices, take your foot off the pedal of activities that (enjoy them though you may) provoke it and so gain some lasting calm. Some of the methods that I’ve found to help can be as follows.

When something different or returned suddenly “goes wrong”in your health, its important not to always draw the conclusion that something has me mechanically malfunctioned, as such, in the body; look first to the nervous system first, what could be provoking it. Don’t always assume it is a physiological development, especially if you are highly sensitive and don’t rush to pursue the kind of treatment that can’t be undone or easily reversed such as a course of drugs or operation. This happened to me a few weeks ago when I happened to be experiencing a handful of days with hypertension when I saw my GP surgery; this was a glitch in a month otherwise defined by normal to often low blood pressure since dysautonomia swings me in all directions at different times. Fortunately my daily tracking (see below) dissuaded the surgery that I needed medication.

If you’re neurodivergent, you probably like to hyperfocus and don’t know any other way of being. However, check the time and appropriateness of a hyperfocus when it arises, eg. should I be asleep or winding down for bed right now, can I postpone? Can I deflect with something gentler? Do I need to question my whole motivation for doing this thing in the first place and perhaps pull back or put it on temporary or permanent hold (more on that later)?

Are you playing to your strengths or pushing yourself in activities that have always (truth be told..though perhaps you didn’t always see it) against the grain of your strengths as someone living on a spectrum? For instance, and this one is pertinent to the fact that I have been so quiet lately, the fact that I often use listening to sources of spoken words such as podcasts and audibles (it almost doesn’t matter on what subjects they are speaking…it works just so long as there is a person talking) to overstimulate myself into a state of torpor when I can’t otherwise manage to switch off or sleep has taught me just how much words, in general, exhaust me. Though I can find them cathartic too, I now realise how much I sometimes give my all to words, leaving very little left over for my other needs…and this has been a lifelong pattern, one I ploughed into my academic achievements and jobs, more recently my blogging. When I write I sometimes feel I’m drowning in the need to find just the right words and my perfectionism goes into overdrive, compulsively reading and rereading, tweaking what I’ve written even after I’ve published. The intensity that builds up in me (more on that below) can lock me in for hours or days, so much so that I feel like I’m stepping over a threshold into another world when I embark on some writing project…but it’s one where I tune out of everything else, my own nervous system’s needs included.

Because I’m an accomplished wordsmith, I’ve always assumed I “like” and “get purpose” out of using a lot of words in my preferred form of expressing them, writing. However, coming to realise just how much words, in any form really, exhaust me has been one of the most insightful things. For instance, some of my worst PEM episodes occur after longish (an hour or more) conversations whilst group conversations utterly flatten me. Also, when I’m tired, my ability to use words is one of the very first things to disappear from my skill-set and my only route to recovery is to cease using them beyond the perfunctory, perhaps for a day or more. And a place full of chatter can shoot me off at the knees, leaving me nothing left to cope with any other demands (such as digesting food!), leaving me ragged by the end of the day. Even reading, these days, can leave me feeling desperately fatigued though I couldn’t get enough of it when I was younger. All of these observations about myself, since realising my neurodivergence, have conspired to inform me just how much I frequently overstimulate and exhaust myself when I sit down to write because, as I do this, my own head floods with words coming at me so fast I can hardly get them down quick enough and then there’s the constant rereading and editing. I started to see this some time ago and yet persist in doing it…and here I am again!

Additionally, writing on a topic that has “already happened” in my health, especially for an outside audience, can trigger, provoke, prolong or reinvigorate past trauma and make me feel vulnerable in both overt and subtle ways…so, I have to ask, do I really need that right now as I focus on this work with my ANS? Will the world stop spinning if I desist for a while (and I encourage you to ask the same question about whatever your own hyperfocus behaviours are if you are in a similar place of needing some ANS balancing)? Could I find another, more benign, direction for my sense of purpose (eg. producing art or reigniting other areas of interest that are more research or creativity based, less writing) at least for now? Just writing these few words, fairly spontaneously, very early this morning (as is typical for me…detracting from what should be sleep time), even in their far less polished than usual format, has floored me today, or perhaps its just that I am noticing more through paying more attention to the collateral. It’s is clue that I need to be taking a break from the self-imposed pressure of churning out regular material, telling myself I “ought” to publish something once a week to make my blog viable and keep its readership alive (yes I know, the audience algorithms will be against me as soon as I slow down my output as I’ve seen it happen before, but so be it). I need to remove from my blogging the task-master element and allow it to be “as and when”, not something I tell myself I have to do!

Which comes back to, knowing when and what is “too much” for you, using your subtle senses to read into that information instead of bowing to anybody else’s expectations of what your system can handle; this part is so important. When PEM is hovering , it can be a tiny, even minuscule, amount of overstimulation, in some aspect of my nervous system quite specific to me, that is enough to tip the balance and I need to become the watchful expert so that I can start to make that part of me feel safe again. Favourably tipping the balance with activities and areas of focus that self-soothe is another part of this; actively working on a list of things that bring about calm and contented feelings, joy, playfulness, the simplicity of childhood, an ability to go to bed with an untroubled mind, without tension left in muscles or toxic feelings built up in the reservoirs of my cells.

So, to reiterate, I encourage you to learn PEM triggers and become watchful of them…without additionally turning this form of hypervigilance into the next trigger! What I mean by this is that it’s one thing to become more aware of nervous system impacting effects in the moment they are happening, and of patterns that exist where certain things tend to generate alterations in physiological factors such as blood pressure range, mast cell responses or end-of-day tiredness and sleep quality, but quite another to hound these triggers out fearfully which, by the way, won’t work because you end up becoming so universally triggered it is ultimately self-defeating. You have to tread softly using the kind of observational skills that bring lasting insight to how your particular nervous system works and that takes developing a quiet, non-judgemental approach and a high degree of patience and curiosity about yourself. It’s something that only you can do and works best when it’s not the entire focus of your existence but more of a gentle subplot or adjunct to generally becoming more self-aware, which is always a positive thing.

Take heart from the fact that more self-epiphanies will likely come in those quiet inner moments than in discussing your situation with any other human being, either a therapist, doctor or an audience. They also likely come faster, if you are neurodivergent, when you cease distracting yourself with the desire or goal of connecting outwardly…you probably work best in the solo so make use of that by putting more energy into self-understanding rather than seeking understanding, which may not come all that easily however hard you try. If I’m being honest, my blog has been one giant outreach project lasting well over a decade but has gained me only a very niche audience; which is not to say I don’t cherish that (I do!) but I have to keep it in proportion with my larger objective of monitoring where effort goes, especially where energy is sparse and the nervous system in desperate need of different behaviours in order to keep it more on the level.

Which is not to say connection isn’t important or worthy of effort but that you may make more strides in calming your ANS by prioritising the inner process first, at least for a time, which is the stage where I am at.

Using activity tracking devices to track patterns of energy usage and the effect of your daily behaviours on the ANS can be hugely beneficial, as I have really found out for myself. It can also really help to inform some really positive changes of behaviour. For instance visually learning for myself how impactful certain activities and behaviours can be, specifically for me (not the next person) because my tracking device tells me so is proving so useful, because I can now see the trends in my own health on the Garmin app connected to my Garmin watch…which is far more impactful for someone as visual as me than being told something probably isn’t working out in my daily routines. For instance, in real time, I get to see the impact, on my whole day, if I allow myself to stim myself awake with something like writing or information gathering when I should be asleep in the early morning, or taking on that extra task when I was already dead-beat, so wearing the Garmin watch again (which I had initially shoved aside after a very short trial when I first bought it last year…) has really helped me turn it into a sort of self challenge to get as much quality sleep, consistently, as I can and to not burn out all my energy for reasons that, in the grand scheme of things, aren’t that important.

In particular, keeping a close eye on stress levels, which the watch tracks using heart rate variability, enables me to see if I am overdoing it before it becomes a big problem (and has taught me such a lot about the kind of activities that result in this outcome…not always the most obvious activities or exposures either!) along with keeping an eye on my body battery, which the watch also monitors all day and all night whilst sleeping. As an aside, I have also revived the use of my HeartMath device (which I purchased several years ago) as a means to learning the feel of being in a state of better heart rate variability; by now using it once a day, I am starting to get a better awareness of when I am in that place. Here’s an episode of one of my favourite podcasts on the subject of all the various tracker watches out there and how they can be used, its well worth a listen…I was gratified to hear the Garmin was her favourite), also another episode talking to the creator of the Visible tracker app specifically designed to help monitor your health if you have CFS/ME (which I’ve just ordered). Using my Garmin watch has already had positive results in terms of achieving a more stabilised ANS over the course of the last month (also far less dysautomia symptoms, which have noticeably subsided week-on-week), combined with running a couple of apps to track my blood pressure and HRV in a way that, again, helps me to visualise the trends (after trial and error, I am using both CardiMate and the Blood Pressure apps on a daily basis, adding my own blood pressure readings twice a day). These new practices are having a massive impact on my self-understanding of my particular ANS and will only become more useful as more and more data is gathered over time.

Which, if you do likewise, can really help you to start to notice any trends. Having some idea, before I take anything on, what sort of impact it is likely to have on my nervous system and energy levels is one of the most useful things I have every utilised as a way of keeping my ANS more stable. I get to know, what are my trends when it comes to doing this kind of thing? Is it going to help or detract from my objective of soothing and balancing this highly sensitive component of my health that has been just so out of whack and taking the absolute brunt of things, all my life? Is it going to soothe or trigger? Then, knowing when and how to say “no thanks” in ways that don’t, themselves, turn into new ways of provoking the nervous system is important and gathering demonstrable data about your track record can also help with this, some of the time (and, the rest of the time, you still have to learn to do what is right for you rather than people please). Knowing when to walk away and that there is no need to justify or explain yourself is important; acknowledging that, at the end of the day, only you know what you need to do to make it better.

So I’m not sure what happens next with my blogging, whether I pause, stop, or do it in a different way, perhaps less intensively. Intensity is a very big trait of mine and I tend to apply it to almost everything I do but it’s not always been a friend to my nervous system or health; so, learning how to engage with less intensity is an ongoing task but, at this stage, an extremely important one to master, though I’m not sure how my output will look without it (or my perfectionism) onboard…this post is already far less pristine or orderly than usual but I’m simply not prepared to spend my typical amount of time or energy on it, I won’t be spending a lot of time editing it as I usually do…so we will just have to see how this all develops, going forwards. I would say, expect to hear far less from me for a time so that I can put all my effort into other things.

In conclusion, when needing to settle your ANS down, look into where you spend your energy and why. Is it important or the only way to get similar results? I blog, yes, to feel connected and also to feel like I’m helping people, putting out there the kind of signposts I’m grateful for other people leaving for me along the convoluted path of being neurodivergent with health outcomes. However, a BIG reason is that my brain seldom switches off thus I need to discharge my thoughts; in order to to declutter my brain, so I can find my thoughts at a later date if I need to refer to them, and so they aren’t all wasted! I’ve tried, and struggled, with journalling since I became an adult (though I did it copiously when I was growing up), often wondering why. I now think the reason for my on-off relationship with it is a fear of losing valuable information if I “only” ever record it in a journal…if I put some useful information in a journal entry, I may never find it again (I have hundreds of filled notebooks in my attic but couldn’t ever hope to find anything specific in any of them, it would be a needle in a haystack). So I guess I began to blog as a more orderly way of discharging and recording my findings and thoughts. Another, more tidy, useful and organised way of discharging my thoughts, storing them safely away in order for my neurodivergent brain to feel safe and contained, is to create tagged notes, which I do every day using an app called Bear. So, in some ways, the need to organise my thoughts “externally” in a public blog has much lessened since I began that and I could then, if really compelled, make my blogs much briefer summaries of some of these notes from time to time; one possible outcome of this reappraisal process. Meanwhile, if I want to try journalling again, to capture the essence of the moment, I could now get on and do this but with all the pressure of safeguarding specific data I want to be able to relocate in a hurry taken off its shoulders, meaning I should now be able to do it for the pure and simple pleasure of creating the kind of impression of day to day life that I so much enjoy reading when I return to the journals of my youth. So it might be that you could find your own less energy-draining way of achieving your prime objective for doing something (once you’ve identified the real primary reason that you do it…) as a way of unloading your ANS; its certainly an approach that is proving helpful for me.

Which leads to another main thing I have to address as someone with ADHD – boredom. I’ve come to realise a lot of the reason I set myself imperatives such as “having” to write a blog, though I have no work pressures as such, is this need to feel like I’m doing or achieving something, and that I have purpose. Some of the time it can be a distraction from a gaping abyss of boredom or lack of direction that feels like its waiting for me on the other side. Watching some of my other family members quite closely lately, I’ve really noticed how we all have this thing…neither me nor any of my siblings are able to sit still or disengage our brains for long; we fill our lives with so-called imperatives and we dash around creating work and movement for ourselves and our minds non-stop, every day (my father was just the same). However, they have the luxury of saying “oh well, it’s just how I have to be, I like it this way” but as the one with 20 years of chronic floundering health behind me, I’ve had to look at it (and its origins) much more closely and critically. If there can be less exhausting, less dysfunctional ways of meeting the need to feel occupied and focused, I have to find them now. When I write, as I said above, it exhausts me (and perhaps because its never been the natural ability I always kidded myself it was…when really its been more akin to setting myself a humongous challenge or doing endless brain games to tax and entertain my ADHD brain) because of the fact it involves using words and courting engagement with an audience that is not always “wired” like me, similar to the effort it takes talking to neurotypical people in a social setting (itself utterly exhausting). In other words, I have always had to work really hard at it; have “happened” to get good at it from practicing, the same way I’ve become extremely good at masking and blending in, but it is as exhausting to me as running a marathon…one I have set myself the target of running every few days over the last few years.

That comes with other costs, ones my physio is shining a current spotlight on: when I’m doing it, I hyperfocus for hours losing all track of time and I sit in all sorts of sustained positions that are really bad for my hypermobile body and nervous system, I also forget to tend to my bodily needs for all those hours, I even forget to breathe properly such a lot of the time. Right now, such sustained effort…where I set myself the task of writing, basically, a thesis once a week…has to be curtailed and my habits allowed to become softer and more adaptable to my body. Of course, in the meantime, if I find anything useful I will continue to add details and a link in my resources sections so you can explore for yourselves. So I feel like this has been one last concerted, if far less organised than usual, effort to explain the “why?” of it before I claim the luxury of taking a break for a while…a necessary hiatus for a non-specific length of time while I focus much more on the needs of my ANS.