When I look back at the time when health utterly crashed, back in 2004-06, its like witnessing a slow-motion tumble from a cliff edge accompanied by the considerable rock-fall of cascading health issues that accompanied me as I fell. I’ve been reminded of that time lately because just so many of the symptoms I have been getting since covid are similar to those I was experiencing at the time and this is warning me just how close to that edge I might be walking…again…so what can I learn from the past? How can I plough all the debris of what I went through back then into the soil where I stand now, so that I grow back stronger this time? A brief recap, pulling out some of the themes, might be a good start.

Back in 2004, it all seemed to all begin when I had a flu-vaccination at work, ironically signed up for to try and protect myself from a flu that might interfere with my ability to work during what was to be my first winter as a single parent with a roof to keep over my very young daughter’s head (I had never bothered to have one before). This was also my first year working in an office environment for many years, having been self-employed working flexibly from home for the best part of a decade up until that point. I already had a chronic back issue to contend with and didn’t want to start out struggling with winter health issues on top of all the major adjustments I was dealing with due to a long commute and even longer fixed hours in a high-pressure sedentary desk job, answering to a corporate hierarchy when I was only used to answering to myself, not to mention quite ridiculous, sterile workflow demands that turned me into a glorified machine, conflicting with all of my logic and personal integrity. All of this was a lot to deal with in addition to all the recent stress to do with my divorce, my financial precariousness plus the extremely demanding logistics of being a working single parent with no other help to call on, so I said yes to a “jab” and, in one of those paradoxical reactions that are the story of my life, promptly fell ill with the kind of flu that wipes you out.

That was just before Christmas, after which I never seemed to feel quite right. When I was still feeling pretty lousy, all the time if in some fairly non-specific ways, at easter and into the summer (like the feeling of being about to get a cold that I could never seem to shake off plus much worsened back pain and headaches spiralling out to other parts of the body), I began to take notice. When my usual September down-turn that year hit me like a sledgehammer and I began to feel more and more sickly as the days got darker, having to take the odd day or two off work here and there, which was completely unlike me, but there were times when I simply couldn’t push through, I really began to worry. The one occasion I always so clearly recall was when I was lying in the bath in the middle of a dark afternoon whilst on sick-leave, feeling too feeble to even get myself out of the now-tepid water that was making my teeth chatter, and an incredibly strong jet of fear and hopelessness, almost a sort of premonition of where I was headed with my health, shot through my nervous symptom and felt like a sort of bell of doom ringing inside me. I suspect it was the stark realisation I was only feeling worse and worse by the week; how on earth could I continue like this with a huge mortgage to pay and where would we end up if I couldn’t?

That Christmas, I came down with a nasty gastro-flu that wiped the floor with me and was pretty unwell for all of my brief period of leave from work, returning to the office feeling fragile and overstimulated. Throughout that winter and early spring, the cacophony of peculiar new health symptoms that began cropping up, bewildering my doctor, made me make me feel like I was turning into a professional hypochondriac, though they were all as real to me as they were terrifying to deal with (this is when I first began experiencing so many of the symptoms I now associate with dysautonomia such as lightheadedness and dizziness on standing, wildly swinging temperature disregulation, extremely weird sensations in my head, chaotic proprioception, tingling or painful neuropathic sensations, heart palpitations and arrhythmia, completely disordered digestion, neuropathic pain etc). Pain levels to do with my pre-existing back issue were by now through the roof and seemed to be turning into generalised widespread pain affecting several zones of my body (I was taking a portable TENS machine and fistfuls of pain killers to work daily) and I became so fatigued that every day felt like pushing through a six-foot snow fall to do the most ordinary things.

About that time, I tried desperately to come up with a plan to return to being self-employed by starting a new business project of my own, so that I could go back to feeling in better control of my own hours, my work-life balance and to remove some of the extreme stresses to do with fulfilling corporate expectations and commuting. Supported by my partner who, seeing my distress, sold his house and bought into mine to take some of the financial pressure off me, I handed in my notice but by the time I had worked out my three-month notice period (I handled a massive client portfolio so this was the soonest I was contractually able to leave in spite of my health issues…) I was in no fit state for starting a new venture and was forced to stop everything to address my health crisis. It took me years to piece together concepts such as fibromyalgia and chronic fatigue syndrome, then even longer to figure out I was dealing with hypermobility, neurodiversity and wholesale burn out, all of which has been the long health journey itemised in this blog.

Virus as the potential “factor in common” with other chronic health progressions

So here’s how I am thinking, now I see the stark similarities with post-covid because, though I have long considered what happened to me back then to be some sort of post-viral illness, the current symptom reminders are really flagging this up more than ever.

How many people have I now come across in my life whose journey into the land of chronic health issues began with some virus they picked up way-back-when and from which they never recovered (far too many to count, I would say). Yes, other stressful or physical (say a whiplash injury or back problem) circumstances may have been concurrent with that virus but I suspect the virus itself is often the very thing that sets the ball in motion. However, what makes it stick to one person compared to another; are strong, intense emotions, perhaps a tendency to over think or overdo things, to be perfectionist or very anxious about getting things right, to not let people down etc. factors that single out some people compared to others when it comes to a long-viral illness? More on that below.

Just now, I have had covid and am still most certainly in the aftermath of whatever that has done to my system, which is proving to be almost more impactful now that the virus has passed than when I still had it (see my last post)…a story now told by the millions of people who have now experienced long covid (sixty-five million is the figure estimated in an article dated March this year). When I fell ill all those years ago, I felt very much alone in my situation as it took years for me to chance upon other people who had been through anything similar or who could relate to my circumstances and symptoms (the internet was still fairly limited in scope and not many people were talking about these kind of illnesses) but, these days, the undeniable weirdness that is long covid has almost been normalised by all of the coverage it has gained in the media. Its an odd thing to realise that what those people are going through, I have also been through for so many years before it was even on their radar and to notice just how similar the effects were on my body, back then, of the (I presume) combined effect of a virus plus a perfect storm of other circumstances that conspired to lead to what became my tumble into chronic health issues.

Some of the symptoms I am currently experiencing after covid are not like anything I have had for a very long time, but which I have certainly experienced in what I consider to be the dark days of chronic illness (dark because I was clueless as to what was causing them as well as how I was feeling at the time). There is such a strong ghost of a memory in the room from the early-days symptoms I had way back when I was first thrown into the mire of crashing health that it is making me quite curious, as well as alarming me (as in, telling me I need to pay attention and not just stay complacent enough to think I can just plough on through or bounce back without taking the best care of myself). This is not my average flare-up; it feels loaded in some newly nefarious way and its as though I am being warned, by my memories, to make sure I play my hand very carefully right now; this is not a time to get reckless with my health.

Apart from a cacophony of weird sensations and symptoms that flash through my system on a sort of daily circuit but which are not consistently present (which tells me there is a strong autonomic factor here; a kind of out-of-step nervous system playing out mischief rather than some sort of physical damage) there is the overriding sense of “something not being right” or “feeling off”, and of not being able to shake whatever it is off from my system, many days after the virus supposedly passed, which is reminding me very strongly of the time before. I feel invaded by a pervasively “odd” feeling, a near constant state of brain fog and and an array of subtly altered (proprioceptive, visual, hearing etc) senses which is becoming quite oppressive as I just don’t feel like myself at the moment.

What I can’t help wondering is whether long covid is a kind of burnout state set in motion by the virus but which gains a momentum all of its own and, if so, what sets up a person’s propensity to succumb to this compared to others who sail through covid and out the other side with no apparent after-effects (I give you the example of my husband who took the whole thing in his stride)? I can’t help feeling some of the answers lay in my previous experience of this.

Anatomy of a post-viral burnout

So, as a starting point, what does my previous experience of physical burnout potentially tell me about my current response to covid right now? Where are the similarities?

Looking back, there was a stress component to what happened to me and then there was a viral one too; I suspect that one or other of these, standing alone, might have had a very different outcome. The sheer similarity of certain more peculiar symptoms experienced in those early days and some of those I am currently experiencing is telling me something important here as I have not had some of these symptoms or sensations all together since back in those times, even though I have continued to have highly symptomatic chronic health issues in the interim. There is something very similar about the sort of alarm state my body seems to be in right now, as though it is in the throes of an autonomic panic state that (I am hopeful, if handled differently this time) may hold the key to a better outcome. Back then, I was clueless about such illnesses plus I also felt like I had no choice but to push on through and keep going with my life as if none of it was really happening to me (the fact doctors had no name or explanation helped me to pretend to myself it wasn’t really happening…). By the time it was at its worse, I had almost no scope left to take any more time off work and had no idea of the consequences I would face if I didn’t listen to my body anyway. In a sense, I bailed on myself because it was inconvenient to accept that there was something really wrong and it was all too easy to gaslight myself because the whole world denied such symptoms were real at the time; that was a dark ages mindset that I won’t be repeating this time and, in my opinion, self-belief is just so important to the whole recovery process.

There is also the factor in common between the way I was on the very brink of a burnout even before the virus hit me, then and also (worryingly) now. Circumstantially, back then, I was at the very end of my tether and right now I feel almost at the very end of my rope once again with all the upheaval and stress we have had to contend with in the last 12 months (a year filled to the brim with constant house-selling then repeated house-moving stress as we have moved from one place to another, all the related financial worries, multiple close family bereavements one after the other and a certain amount of work turmoil). I suspect that, back in the day, some virus I happened to pick up in the thick of all my circumstantial stress was, in a sense, “doing my bidding” when it forced me to get off the merry-go-round and stop everything. Perhaps not done in the most elegant or desirable way but the very fact that my health crisis forced me to leave that heinous job and reboot my life was, after a fashion, just what my nervous system most needed at the time so I can’t help wondering if this is another factor influencing outcomes when people come down with covid. If some unspoken part of them NEEDS that interruption to their normal life then how often does their nervous system, in a sense, grab onto the virus and use it to effect that very thing, by hook or by crook? My recent dive into the topic of Tension Myositis Syndrome (TMS) has taught me just how powerful our unseen fears and emotions can be when it comes to presenting as very real physical outcomes. When those fears and emotions aren’t being allowed any other outlet (for instance, when they are just too darned inconvenient to pay attention to because the circumstances you are dealing with feel non-negotiable) then they may very well “out” themselves in some other way, for instance by opportunistically grabbing onto a passing virus and making a meal of it!

Which hints that the earlier you sit down and take stock of any unspoken fears, desires, emotions, frustrations, angers, dark hidden truths and so on, after you start to notice the tumble into burnout, the less likely your body is going to need to continue following this path and may allow you to shake off the ulterior method for gaining your attention…because, in effect, you are now giving yourself all the very attention that you need. Your subconscious doesn’t need to trick or distract you with a health emergency any more, once you start to really listen to it, but can allow you to get on with healing the current health crisis.

The emotional component

Yesterday’s post dived into the topic of how covid may impact the all-important vagus nerve and this is borne out by the cacopheny of widespread symptoms that can arise in long covid, no less in me at this time. Some of the oddities I am still experiencing, such as an intense nerve spasm lasting for days now from under my shoulder blade into my neck, head and arm (incidentally, this also occurred right before my original health crash all those years ago…), may be a sign that my vagus nerve has gone into extreme fight or flight mode. Episodes of breathlessness, of impaired gut motility, wild temperature disregulation, extreme fatigue, muscle rigidity, vascular headaches, tingling face, intense tooth pain and sensitivity, blurred vision, much intensified ear ringing, dizziness, spacey head and brain fog, increased gag reflex, problems swallowing and choking episodes, orthostatic intolerance and so on could all point to the vagus nerve being inflamed in the aftermath of the covid virus.

The spooky part is just how similar these symptoms are, as a mass, with those I was experiencing in the final months before I gave up work all those years ago!

The thing that makes the vagus nerve so fascinating is that it is regarded as the gatekeeper nerve; a direct link between the sympathetic and parasympathetic nervous systems, as much an agent of the right brain as it is of the left; an emotional nerve!

Just yesterday, when already not feeling at my best due to overexertion (I was on my daily walk, something which fatigues the hell out of me at present), somebody said something to me that suddenly impacted me emotionally and the lump that formed in my throat was so exaggerated I felt like I might choke. That feeling of “lump in the throat” is a normal human reaction when emotional but also one with a practical explanation; when the vagus nerve goes into fight or flight (stress or crying will do this) it instructs the airwaves to open wide ready to take in more oxygen so that you can run from the predator; so the glottis (the part that lets air travel from the larynx to the lungs) tenses up in order to become wider, something we don’t tend to notice when running. When this happens to coincide with the impulse to swallow, the glottis is then meant to close to cover the vocal cords so the two impulses come into conflict and it can feel as though you literally can’t get that swallow mechanism to work. So, yes, this is a feeling I am familiar with (probably, we all are) but never so much as yesterday, when it felt as though a large potato had become jammed in my throat (I remember this happening, repeatedly, around the time of my earlier health crash…as well as frequent episodes when my jaw would lock in an agonisingly painful position for many minutes at a time, again always at times when intense emotion overcame me). The vagus nerve has a great deal to do with the throat, including swallow mechanism and muscle behaviour, and when appropriately activated will allow the muscles to relax and swallowing to take place but when there is increased tension in the throat due to it misfiring, this whole process can get out of step (just one indication of how emotions get handled clumsily in the body when the vagus is struggling to do its job; I imagine this significantly impacts other factors such as digestion, temperature regulation, muscle behaviour and breathing too). In other words, during the post-viral phase, the vagus nerve seems to get into its own dysautononic mess, sending conflicting signals all over the place, whenever high emotions are involved!

I do know now that my propensity to experience high emotions, or you could say “emotional intensity”, is part of my neurodiversity but I had no clue about this almost twenty years ago. You could say that this makes me even more open to disautonomic chaos at times when my vagus nerve is out of whack. Lack of vagal tone is a known component of autism and ADHD and is described as one of the reasons for difficulty handling transitions, which I can well understand given the vagus nerve is the means by which we make any of the everyday transitions required to deal with, say, changes in temperature or environment, the sudden need to secrete gastric juices because food has just been introduced to the mouth or an ability to regulate emotions to fit the circumstances. When emotion gets to me it sweeps me over, perhaps more quickly and vehemently than the next person, possibly because (once I am in it) it becomes very difficult for me to turn my vehicle around and head another way…I’m in it for the long haul or until its run its course. This factor becomes even more glitchy when I am under the weather and I now suspect the part played by my vagus nerve is the reason why. If even more compromised than usual because its inflamed then emotions are probably going to run away with me more than usual, post-virally…as they did back then (when what happened to me felt like it was as much of an emotional meltdown as a physical burnout) and as they are in danger of doing so now; not least because getting covid over Christmas after such a hard year, and with two more house moves coming up next week, has been almost more than I can take.

Another factor I feel I want to spotlight is a sort of rejection sensitivity dysphoria (dysphoria means a state of unease), that trait or type of experience so often associated with neurodiversity. The kind of rejection sensitivity I am referring to here has nothing to do with rejection by another person but by life itself, you could say its a sort of existential dysphoria, because around the time I first health-crashed, I was already feeling distinctly abandoned by my own life circumstances (I wonder if this is a very common neurodiverse experience due to the circumstantial odds always being stacked against us). Nothing ever seemed to go my way in the year or so before my crash and, as soon as I managed to get on top of one thing through blood sweat and tears, another three would seem to hit me straight between the eyes but really this was just the end of a long track record of struggling to fit in or thrive as an unwitting neurodivergent person condemned to mask myself every day even without fully realising why this had become so imperative to survival. I admit I have been feeling a bit like that again lately, as mentioned above, what with so many tragic family circumstances (diagnoses and bereavement have come at us like a series of waves this year) as well as constant set-backs with our house purchase not to mention all of my autistic buttons being pressed by the need to constantly re-adapt to new new circumstances and deal with many more social situations (not all of which have gone smoothly…) compared to the old life. So, does a mindset of rejection sensitivity potentially serve to underpin a health burnout; could it make all the difference between a mild dose of virus and a long-lasting aftermath? Does an existential weakspot make certain people vulnerable to a more devastating outcome?

In other words, are neurodivergent people more prone to chronic illness including long covid (they are already known to experience more pain, more gastrointestinal issues, more environmental sensitivity and sensitivity to internal body processes and I would add emotional pain)? One quick google and I found a study investigating this very thing which concludes “Higher autistic traits predicted COVID-19 symptoms that lasting more than 12 weeks regardless of formal autism diagnosis…though the direction of causality in this case is uncertain”.

However, seeing the bigger picture of this as I now do warns me that if I allow my emotions to get carried away, or my sense of hopelessness to keep on feeding itself, this will only loop straight back into even more dysautonomic chaos. I can’t help wondering how many of the people impacted by long covid had a similar emotional component to that outcome when they contracted the virus or tried to go back to work too soon (all their pre-existing, perhaps under-acknowledged, stressors such as financial fear, relationship strain, job loathing, other health concerns, years of masking whatever version of “diversity” they have yet to acknowledge to the world and so on suddenly coming to the surface) hitting their highly emotional vagus nerve exactly when it was feeling most down!

This tells me just how important good self-care…in fact, the best possible emotional self-care…really is at this juncture. Whether its a case of talking it out, journalling it truthfully (in the way recommended by TMS experts), gently being honest to yourself about what isn’t working and resolving to make a few changes once you are better, also meditating, self-soothing with music and films known to calm you down and keep you feeling optimistic, spending time with a pet, focusing on whatever portion of nature you can land your eyes on each day, etc. this is what’s most important right now…NOT racing to get back to normal; all of that can wait.

Respite needed

By remembering my track record of burnout, including how my body will call on absolutely anything it can lay its hands on if it offers a chance to slow me down (and I include in this my propensity to overthink things because my over-active brain doesn’t seem to know the meaning of taking a break) then I have to get better at enforcing the kind of recovery phases that I really need. Since I came down with covid, I have had next to no pause because of Christmas and family, the ever-present awareness that we need to move location yet again next week and the matter of trying to steer our solicitors towards a completion date on our house purchase in the coming week or miss half a dozen deadlines. Circumstances seem to be stacked against me being able to slow things down right now…but slow them I must if I am to bounce back from this any time soon!

Its a case of do this or watch myself break again and, knowing what I do about how long-lasting and devastating the effects of this kind of health breakdown can be, I am fully aware that this is the last thing I need to coincide with supposedly embarking on our new life in our new house very soon. What I need to remind myself of is that, once we get there, its just the beginning of a very long process of settling in for the rest of our lives and doesn’t all have to be tackled or made perfect overnight (perfectionism can be one of the biggest obstacles to health recovery because it keeps us “just” going that extra yard, even when we are exhausted). Having been in super-fast, ever adrenalised, thinking-on-my feet mode for months now (not unlike all the hyper-busy, everything-depends-on-me, constantly adrenalised months that preceded my original crash), I need to remind myself that there’s time and option for things to slow down now that things are coming together and that I can afford to allow the next phase to unfold under its own momentum without me always pushing and steering things along. There’s nothing like having a high degree of control freakishness for the universe to decide its time to demonstrate that, in reality, you control absolutely nothing by dumping the kind of health issues onto you that don’t conform to any kind of predictable format. To avoid that happening, its important to be prepared to bow down to the organic nature of life and stop demanding to always be the one in the driving seat!

Certain things about my current circumstances might well serve to remind me of “before” (otherwise I wouldn’t be writing this blog) but that doesn’t have to mean that history is about to repeat itself. I have always tended to prefer to see life as a spiral rather than as a linear progression or a circle on constant loop. Yes, we may revisit circumstances we have been through before but its not a case of “oh no, here we go again” so much as a chance to take the more evolved approach with the wider-viewpoint as compared to the more limited one that we necessarily took through the territory the first time, before we had the chance to gather the kind of wisdom that only ever comes from hard-won experience. By looking back at the way we handled it last time, we can hopefully notice all the ways that we were proved misguided and so get to the broader perspective far more quickly this time. Rather than feel defeated or demoralised at what may feel like a set-back, we can use this as a push-off point to elevate ourselves to the next level of self-understanding and, hopefully, quicker recovery because this time we didn’t overlook or ignore all the signs but, instead, listened to what we most needed, taking it all much more seriously before our bodies had to shout “stop”.

Disclaimer: This blog, it’s content and any material linked to it are presented for autobiographical, general interest 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 symptoms that concern you.