Its a topic I’ve alluded to before, many times, and now I want to reconsider it in relation to yesterday’s post on sensory defensiveness. Perhaps because I am plunging that particular topic more concertedly than ever, noticing my own trends in light of sensory overwhelm, it feels as though I am piecing together a distinct relationship between my episodes of sensory defensiveness and times when I have a hypermobility “flare-up”, also fibromyalgia, chronic fatigue, PoTs and mast cell reactions. In other words, the sensory defensiveness occurs first and those other effects happen afterwards, as a direct result (is what I am proposing).

Now, when I have a flare, I’m noticing how the most practical steps I can take are to instigate a low-sensory hour or even whole day to recover, more so than “a rest” per se, as in, its the degree of sensory stimulation that has maxed-out and needs modulation. That migth look like using earplugs, ANC headphones, music and tinted glasses more, avoiding too much of anything (sunlight included) or sitting in a quiet room, watching the birds, listening to carefully selected audios, wearing softer clothes, avoiding obvious aggravants that cause friction (yet applying firm pressure and moving regularly, both of which can help refind equilibrium!), abolishing sources of sudden sounds, disharmonious rhythms and so on and, of course, asking that people go softly around me. If I take all these steps, I can often recover my strength far quicker than a day of bedrest, sleep or sitting around, using heatpads or bathing etc., in fact those things might be the very opposite of what I really need to recover myself.

As it happens, I have a point in case from my morning. A predicted heat wave later today (or at least, temperatures over 23 degrees, which is a heat wave to me!) prompted me to go for an earlier walk on my own across the meadow and woods near my home. When I left home, I felt pretty bright and breezy and set off at a good pace, arms swinging by my sides. The temperature was bearable, just, but I could feel it starting to prickle my senses, as highs and lows always do in an exagerated way, as does direct sunlight bearing down on me with no shade to retreat to. I still felt mostly fine across the meadow but the effect was certainly building as increased pain and weakness in my joints and blurred vision that was mounting pretty quickly as I walked. When I reached the woods, the effect of the transition to much more shade along with so much going on visually…so many leaves dotted over and around me moving in the breeze, dappled lighting, alternating light and dark shades, branches and fallen logs, uneven surfaces, everywhere…felt so utterly overwhelming to my visual and proprioception senses that I immediately knew my minutes on that walk were numbered. I felt weak, dizzy, a little tight-chested, suddenly fatigued and knew I would have to head home because I could feel myself buckling, fast.

So, having done a much curtailed circle that took under ten minutes to walk, I headed straight home on what had turned out to be a much shorter walk than intended. A year ago, I would either have pushed through and done my normal circuit inspite of unpleasant effects (then crashed when I got home!), or, I would have come down hard on myself for managing to do so little. Also, when its happened before (and it often has), I’ve raked my mind for all sorts of reasons why the woods affected me so much, most of them overly complex or abstract but with absolute, crystal clarity today, I “just knew” it was a case of feeling visually overwhelmed (too much visual data hitting me all at once!), as a secondary effect to the fact my body was already reacting to the steady increase in temperature. Temperature, being the invisible effect, is easy to overlook and even the visual effect can be overlooked if you are not savvy to the likelihood of alternating patterns, light and dark or “busy” visual stimuli having a direct physiological effect on a defensive nervous system (similar to how some people can’t look at strobe lights…this is more subtle but nontheless real and I am noticing it in myself, more and more). Once you are aware of these things, the pattern of behaviour is all so simple. I might have gone home blaming a hypermobile episode for my feeling of being “weak at the knees”, or a fibromylagia or chronic fatigue flare-up for the whole thing (aching muscles, tiredness etc). Instead, what I see here is a perfect demonstration of sensory defensiveness; a fight, flight or freeze reaction hitting me right at the core of my central nervous system, curtailing my outing!

One thing I want to add here is that, in the light of this (potentially) being a fight, flight or freeze effect, going straight to the sofa to lie down is not necessarily the most helpful response as it reinforces to the body that it has to surrender and submit to whatever it thinks is attacking it. This is important to note given that, in the context of having a fibro of chronic fatigue flare or thinking this is a hypermobility issue making you feel weak, you might do just that, even taking to your bed. My observations and experimentation, lately, have highlighted that, at least in my case, chosing to stay upright and gravity-defying, even doing something gently stimulating such as listening to music, hastens a recovery, compared to lying down and surrendering to rest…because, then, the body can start to rally and find its own equlibrium again, albeit in a less sensorarily triggering environment. I have even found gently stimulating drinks such as peppermint and licorice are preferable, at these times, to something like lemon balm or chamomile which have a subtle sedative effect, thus sending the wrong message. What we want to do is acknowledge the trigger yet reassure the body that its not so bad and we have it handled, not that we have to submit to it and shut everything down into an enforced state of calm.

Changes in air pressure are one of my biggest triggers, for sure, so these episodes happen to me, a lot, in the height of summer and also the extreme cold of winter and I often inhabit quite a different body in the middle seasons (especially Spring) when there is more moderation and equilibrium, which certainly suits me best. I cope less well with midday conditions than ever now, almost never sit in full-sun and have to ration my outside time, even on the ideal-seeming days, so as not to overdo all the different stimuli from being outdoors for prolongued periods when I am not used to it. Sudden flares are also an effect I get from suddenly changing my clothing to suit the weather, (in summer) meaning far more skin exposure, much less supportive garments around joints and torso and, I guess, a subliminal feeling of increased vulnerability whereas clothes can feel too constrictive and heavy when the need to wrap-up occurs….all normal effects for most people, but highly triggering ones to me with my neurodiverse sensibilities.

Sharon Heller describes a similar episode of what might sound like an unlikely sensory trigger, to most people, in her book “Too Loud, Too Bright, Too Fast, Too Tight”:

“Sufferers know that their overreactivity is not normal, but they don’t know why it happens. And though they feel easily overstimulated, they are generally not fully conscious of how this experience influences behaviour. Take Marge. Ready to chain her kids to the wall after a day of shopping for school clothes, Marge assumed that she had PMS, or had not had enough sleep, or was in a bad mood or demented. Then she stood in front of her mirror and pulled her hair off the back of her neck. Suddenly she felt a hundred times better. Better able to tolerate the commotion that her kids were making, she stopped screaming, related to them calmly, and redirected their energy”.

This shows just how important it is to notice your own everyday triggers and, particularly, pick up when and why tension is mounting in your system (clues are shallow breath, tight fists, rigidity in stomach, chest or throat) in the hopes of catching the reason why before it develops. It could be something as subtle as the sound of the fridge motor or washing machine whirring because the kitchen door is left open but, whatever it is, catch it. I can always tell when I am into a sensory defensive phase for a day or two as the merest touch of minty toothpaste on my teeth can send intense shockpains through the nerves of my teeth and face or the shower water can feel like shards of glass stabbing into my skin. Again, Heller gives an example of one woman who experienced this so acutely she would cry to see shower water coming down onto her partner’s face as she felt like she was watching him being harmed. On those days, I know to go softly…very softly…on myself.

Hair is one of my triggers, getting worse as I age, such that I now mostly wear it yanked off my face these days, unless I am going somewhere I want to look more smart (which means the annoyance of hair adds to all those other triggers when I’m out…but I don’t suit short hair!) yet I can’t have it tied too tight or at the wrong height. I can recall vividly how much this sensitivity jumped me through burning hoops of torture as a child when my mother tugged my hair back hard and severe from my face into fastenings designed to stay in for many hours, bashing my scalp hard with the brush as she did it, however much I complained. Can the feeling of what hair is doing trigger a sensory defensive reaction? Certainly it can, in fact hair was designed to feed back crucial sensory data to the nervous system (like a cat’s whiskers) and ours, in the case of a sensory defensive, is often working overtime!

What you have to bear in mind is that sensory defensiveness is defined as having an anxious reaction to non-noxious sensory stimuli, as in, a negative reaction to sensory input that is typically considered either positive or at least neutral. Most people have a few sensory defensive traits but when you have several and they really impact your day-to-day life in adverse ways then you are sensory defensive. Therefore, the trigger (for you) might not be obvious and finding it takes thorough self-awareness and a habit of noticing patterns, joining the dots of scenarios that directly affect you, time and time again; even if they don’t seem that logical.

After all, what does the body do when it feels all hope is lost, the show is over and the predator is about to eat you alive? It collapses onto the floor, curls up, submits to its fate, now weak at the knees and folded up on itself in the faetal position. When hypermobility flare-ups come along, it can feel a lot like all your stuffing has run out and you are suddenly a rag-doll, all robustness gone out of you and succumbed to the couch.

This is the same effect I’ve noticed for years when I walk into a heavily EMF polluted shop in a shopping mall, even as I step through all the security gizmos at the door…its as though my legs suddenly buckle and I have to find a seat, or leave as fast as I walked in. Thankfully, this doesn’t happen all the time now (though I seldom go into such shops…) but, when it does, its much more likely on days when sensory triggers have been steadily mounting, for instance, crowds, noise, bright lights, unusual ingredients in my breakfast that day (if I am staying in a hotel, for instance). That same effect I had on entered the dappled woods today has happened to me many times walking past a hidden electrical substation on a street corner, as though my legs have been knocked from under me and, one occassion, I would have fainted to the floor if my partner hadn’t been there to catch me. Walking or even driving close to pylons and cell phone towers, espcially the new 5G ones, can do the same and there is a particularly massive aerial strewn with satelite dishes and so on positioned on a hill along the motorway 40 minutes from home that makes me feel as though I am having an out-of-body experience whenever we go past it, even if I am not paying attention out of the window or dozing as we go past.

Last time I spent three days in a city, I had profound Ehlers Danlos symptoms, even prolapse and gastrointestinal effects, by day three and could hardly walk for unstable knees and other issues, though these effects had built up fairly subtly on the previous two days. It would have been all too easy to blame it all on mounting “fatigue”. Looking back, I now just know that my senses became overwhelmed, more and more, as the stimulant effects I am not used to (crowds, mobile phones, noise, movement, light…) built up all around me, triggering my sensory defensiveness in a very big way, even though I was thoroughly enjoying myself (these are not mutually exclusive!). There had been precious little oportunity to recover between sensory exposures (again, staying in a big city hotel with all its sensory triggers and EMFs floating around) and so I had maxed-out on day three, with the resultant EDS and then PoTS effects. I spoke about the full moon having an effect on EDS the other week; so, what if this is just the same effect…a hypermobility episode, in the days afterwards, in response to the overstimulating effect of the moon or any other electromagnetic onslaught, the kind that most people are blissfully unaware of? On the topic of some of those weirder, or at least less talked-about, effects of sensory perception, I’ve long noticed how times when I experience sudden inflammatory responses, quite out of the blue, correspond with activities of the sun. This past 24 hours being point in case (this added on 18th May) because I had such an episode overnight, with intense back and leg pain, fiery hot flushes and borderline migraine, to discover that a new sunspot genesis on the sun has rapidly doubled in size in recent hours; a correlation with my physical symptoms that I’ve tracked many, many times before.

Motorway travel can do the similar things to me (compared to travel on quieter roads), partly to do with thick EMF smog and fumes but also the increased vibration, noise, movement, crowdedness etc., mitigated somewhat by taking regular breaks, shorter journeys, sunglasses and earplugs or ANC headphones to cut out the sounds and vibrations of the road, elasticated back and midriff supports to pre-empt sudden hypermobility issues, cushions, neck support and careful sitting posture, plus anything else that helps keep my nervous system in check, such as appropriately calming music. Using these technques enabled me to enjoy a fantastic holiday this last couple of weeks, with minimal hypermobility isses (though decidedly worse on the post-travel days…so, ample low-sensory recovery days were factored in, no arguments) and I have come home feeling pretty intact, helped by the fact we stayed in extremely natural and peaceful places, with very few adverse sensory effects (far less than I am subjected to at home). This morning’s reaction is out of the blue and feels directly connected to the sudden air pressure change, especially as I have been staying somewhere with a much cooler climate than home for the past couple of weeks, meaning the transition is hitting me harder.

Sitting down at a computer is another common sensory defensive trigger…something I’ve noticed for years. Apparently “most people brace with their upper bodies the moment their fingers rest on a computer keyboard, and chest-breathe and breathe quickly while typing” (Heller – “Too Loud, Too Bright, Too Fast, Too Tight”). For me, unsurprisingly, the effect is even even more marked; sometimes worse than others. I didn’t touch my Mac for almost two weeks while I was away and the noticeable affect to my nervous system, as soon as I switched it back on again on my return, was particularly stark. Its as though something is eating my energy as it fires up and there is often a rush of cortisol, even when the reason I am putting it on is to do with something pleasant. When I watch videos, I have to do so at much more than arm’s length and zoom calls quite literally drain me away whilst making a sensory backlash almost inevitable in the hours after they are done. The other day, I joined a lengthy call where someone was screensharing as they made edits to a file and I woke up, the next day, feeling highly triggered. I then realised that my mind (and my nerves!) were still playing an internal video of text boxes and text being added, moved, enlarged and otherwise adjusted at super-fast speed, as though I had recorded the call with my mind’s eye and played it back on constant loop inside my head for over twelve hours non-stop, including while I was asleep!

I’m sure some of these sensory anomolies could be considered gifts in another world; one that does not trigger to hell and back the sensory perceptive type, to the point our senses go into perpetual overdrive until they get caught up in the giant butterfly net of endless fight, flight or freeze reactions, to languish out our days in a state of constant overwhelm. Imagine being able to run detailed visual videos in your head that continue or even expand upon your creative or analytical activities so that you can develop your ideas remotely, or being able to see, sense and feel things that other people routinely fail to notice, to their detriment. In fact, in another era, we would likely have been the early-warning system of the community, performing a valued and respected role in which our cautionary advice was frequently heeded (and, truth be known, it still is but we rely on far-less reliable sources of early-warning, these days). Then, imagine the equisite experiences our sensitivities would enable us to enjoy, when not sullied by a world that is too loud, too fast, too stimulating. However, in such a world, those inborn gifts are too-easily turned inwards towards pathology, no doubt resulting in, or at least contributing to, a host of bewildering health conditions.

Its just so interesting to try-on these familiar health “flare-up” scenarios in a new way, seen through the eyes of Sensory Defensive Disorder rather than through the more blinkered perspectives of a particular conditions such as hypermobility or chronic fatigue sydrome. It certainly helps to explain how these flare-ups can come on in the most arbitrary manner with no obvious trigger. If sensory defensiveness is at the root of them, or even significantly responsible for such flare-ups, then its possible to tackle all of the above my tackling sensory defensiveness as I am now doing (see yesterday’s post and more shares to come in the coming weeks). As I mentioned yesterday, if you believe you might have sensory defensiveness going on, I strongly recommend you read Sharon Heller’s extremely useful book “Too Loud, Too Bright, Too Fast, Too Tight: What To Do If You Are Sensory Defensive in an Overstimulating World”.