Yesterday, I was at an outdoor concert in an idyllic setting listening to some of my favourite music and something fascinating occurred to me. I was less than 5 minutes into the music and I realised I was bored. Some part of me was screaming an existential scream, knowing I was going to be sat there like this for the next couple of hours. It was an admission to myself, and my husband, that made me cringe because it sounded ungrateful, petulant, childish and yet, if I’m honest, it was a eureka moment because it’s a factor of me…a core one at that…that has been there all my life.

No reflection on the music, the company, the setting or my level of gratitude to be there, this chemical component of me that I have no control over had this whole panic-thing going off in my head like a siren sounding at feeling under stimulated and pushed out of my own drivers seat. I was at the mercy of the concert now and there was nothing I could do but subject myself to polite behaviour and its timings. The most compelling thing, as I analysed it, was it was very real and tangible, this thing I have spent years denying, even attributing my feelings of discomfort at such times to other things like the seating or the electric lights overhead (here, we had our own seats and were outside in a garden). Though I enjoyed the concert overall, it was fascinating to behold this trait in me, in all its starkness. How many times has the curtain raised on some performance I’m excited for yet some other part of me starts to panic?

If I could multitask during the concert, had (say) brought my embroidery with me, for instance, I knew I would have been fine; as it was, I began to take photos of the scene, to fiddle with my camera settings and our picnic, I even rolled some essential oil on my hands so I could stim myself with an enlivening aroma (I use scent a great deal as a “stim” of “self stimulating behaviour” used to self-regulate the nervous system). A sudden grasp of why my mother took knitting with her to almost everything dropped and span on the table of my mind like a shiny penny. My husband, at that moment, leaned over and (without me having shared the thought about my mother) whispered an anecdote I had heard before about Joan Crawford, who was well known to take knitting to “set” whenever she was filming for all those brief interludes when she wasn’t otherwise doing anything.

I’ve heard on forums and podcasts, recently, of women with ADHD that have to scroll through their phones, or pick at their own skin to the point that they bleed (suddenly, across the annuls of time, I recall my mother doing just that and, though I no longer do it, I have had to own up to the fact I did as a teenager) whenever they sit down to watch a tv program, When I heard this I cringed, being the perpetual fidgeter through programs, so much so that its a family joke. Its why I panic when people say to me “let’s sit down and watch a movie together tonight” because I know that I need regular pauses, to get up, move around and do something completely different at regular intervals or at least Google some pressing question or other I’ve just thought of (that generally has nothing to do with the film, although its sometimes a fact-find about one of the actors or some component of the plot and its not unknown for me to dig a whole rabbit warren of “research” before returning to the film). Whatever it is that I “have” to know right now when I am meant to be viewing something, I often find other people don’t relate to my need to do it in that very moment, or to jump up and take a shower or tidy the kitchen, or prepare a snack for ten minutes before resuming.

Really, its just something to break-up the monotony, the ache in my brain, from sitting still so long. I can hyperfocus alright, for looong periods (say, when I’m researching or writing or painting) but that’s on my terms and is INTENSE. When it’s on other people’s terms, such as they are telling me a yarn, performing something or unfolding a plotline in a program, some part of me panics at the lack of self-driven stimulation and I can recall the torture of it all the way back to story time or morning assembly during my first years at school, when to fidget was forbidden. The only way I could cope was to distract myself with finger tapping complex rhythms and other tics or to “zone out” into a dream state of my own making but then there was always the terror of being called back with a question and making a fool of myself. I lived with constant dread over this and the feeling there was something wrong with my brain, that I couldn’t take information in unless my hands were also busy.

These epiphanies I have been having lately about ADHD have been life-altering for the fact they shine light on furniture in my brain that has been there literally all of my life and yet I find I have been brushing past it in a dark room or bumping into it clumsily…until now, the lights are starting to be turned on one by one and I’m starting to get to know my way around it all. Its proving to be a revelation and I am only saddened that I didn’t realise about ADHD far earlier; not to label it “faulty” or “wrong” (I don’t believe it is so) but so I could better understand and thus learn to work with it, avoiding some of the pitfalls (including those of trying to normalise myself and deny those things that, for me, are hard or even agony…like sitting still for too long when I need to feel adequately stimulated to be at my zenith).

The other day, I read a post by June Silney in ADDitude Mag entitled “12 Things You Don’t Know About Me and My ADHD” and at first it made me laugh out loud, so relatable was it, and then it made me cry. I don’t cry very often and hadn’t for months and yet there I was, sipping my morning tea in the garden with big hot tears rolling down my face, which were gone as quickly as they came yet they had appeared to tell me something important about myself. Not only how “true” all of these revelations were about me (every one of them described some aspect of “me”) but also about the degree of pathos lingering in my soul that I have kept these and more traits of mine guiltily hidden from sight all these years, not just from other people (because some part of me was deeply ashamed of them and how they make me different or socially inappropriate) but also from myself. There is huge catharsis to be found in admitting them now, and there are also many insights to be harvested as I do so, which is why I find subscribing to resources such as ADDitude mag and various ADHD podcasts I listen to so rewarding (as it puts me in touch with others who share relatable experiences)..

Chronic illness – a stim too far?

The reason for this long preamble abut how fidgety I can be is that I am getting clearer, or at least a little so, about the complex relationship that lurks beneath the relentless persistency of my health problems since I first became unwell with fibromyalgia and chronic fatigue syndrome, etc. 16 years ago, and all the many things that have added to that stockpile of health problems ever since, and ADHD. Not that my health syndromes aren’t “real” as they most certainly are but I’ve become aware that there’s this other component lurking in the background, to do with my ADHD and a need for stimulation, that makes the process of achieving improvement in my health more difficult than it might otherwise be for, say, a person without ADHD.

The thing is, like now when I am having a “flare-up” of symptoms, there’s this double pronged thing happening, simultaneously, and I am becoming more aware of it than ever through the eyes of ADHD.

Partly, there is a really low feeling, like an almighty dump of serotonin has occurred overnight leaving me feeling, yes, borderline depressed, defeated and existentially challenged to be back in the land of bizarre autonomic symptoms, pain, sleeplessness and of course worry. Then, alongside of it, there is this corresponding part of me that, as it were, springs into action at the first sniff of another bout of “crisis” and which leaps to the chance to pick over it with an intellectualisation urge that smacks of all my other stims. Yes, there is dopamine to be had out of unpicking another knot (the same as there is from overeating, shopping, all those other dopamine-fuelling activities that people, and not just those with ADHD, get hooked onto). I am well aware that I get a kick and a high out of having a problem to solve, the more unfathomable and challenging the better. Its something that helps me to thrive and a part of me feels dead or comatose without it.

I’ve been having a run of broken nights at the same time as this flare-up and tend to find myself awake at about 3am onwards, though I am generally in a deep sleep until that point but then suddenly I am wide awake. As I lay there this time, I found myself wondering if part of the motivation for this wake-up is the quiet that is available to me at 3am, that is seldom available at any other time where I live, being the only time the roads go (almost) completely quiet for a spell before the traffic that drives me to distraction starts again at about 6. My hungry mind seems to relish this peace and quiet, almost as though it has set an alarm to rendezvous with it, so that I can start to ponder and get my thoughts crystal clear before the day gets started, because as soon as I am awake its off again, like a greyhound after a rabbit!

So, part of me is frustrated at not sleeping through the night again; the other part is ready to dive straight in with whatever ponderous topic it is eager to set to work on, some giant knot begging to be unravelled…not always, but very often to do with some aspect of my health, especially as I ban myself from thinking about more worldly concerns at 3am but somehow the consideration of how this thing connects with that thing in my body feels more benign than pondering finances or politics at dawn (this, in itself, alerts me to how a focus upon one’s inner landscape, as the preferred and “safe” domain, could turn into a fixation with the body). At this time of the morning, I make connections I might otherwise miss and (I notice) if I find a thread I can set to work on researching in the morning I’m happy to settle back to sleep for a while and there is almost a relief in me, like “phew, I have something to get my teeth into today” and thus boredom is allayed. The darker the days, the wetter or drearier the weather, the more I suspect this comes in as a kind of relief whereas, in the brighter, longer days when my body tends to be more cooperative and offer more options for stimulation, I am less inclined to find relief in having a crisis to fix!

To say I deserve a PhD by now in matters of my own body and my particular health conundrums is an understatement as I have spent a decade and a half trying to get to grips with them; and the more grip I get, the more often my body throws another spanner into the works. Some of what I find out I share here, such as when I reach some sort of conclusion or feel my ponderings are are worth saying outloud, but many of the threads of my “research” through self-enquiry and reading copious studies, gathering resources, are kept to myself, documented in detail using an app where I keep copious notes and cross references so that it has become like a massive spider map of information. Suffice to say, I have made quite the study of my own health particulars and its helped me navigate through some of the most perplexing health issues imaginable, and yet I do realise that not everyone with health challenges does this, especially as it is all completely self-propelled. Yet, there are quite a few others in the chronic illness community like me; I have brushed up against them in the forums, many have their own blogs and they clearly know a lot of stuff about these topics, but I can’t help wondering if another thing they have in common is ADHD.

So, at what point does the ADHD actually feed the sheer complexity of the health problem, in obvious and not so overt ways, as well as helping to navigate and motivate a way through it?

I’m not saying that ADHD made-up the health issues I have in order to give itself something to do; that is far too simplistic and potentially insulting towards myself and all I have been through, how very hard I have tried to recover my health. However, in myself, I do notice a very fine line that I walk whereby, IF I happen to be having a flare-up and IF I then turn to intellectualising the nature of this flare-up too much then it can result in the opposite effect to what I really want, which is for the flare-up to soften its grip on me and glide by easily and quickly so that I can bounce back to better health. Yes, there is a case for quickly turning my intellectual resources on when my health takes a knock, to try and work out what triggered this sudden worsening of symptoms and acting accordingly, but if I make a real meal of it by overthinking and hyperfocusing, even stimming myself with the whole challenge of it, and then lose the broader perspective (including the realisation that to fixate on it in will potentially keep me stuck there!) I may reach a very precarious state that I am only just beginning to size up in my viewfinder.

Can chronic illness be rewarding?

That tricky state is the one where I begin to gain more of a dopamine fix from having the big problem to get my teeth into than a fair chance at recovering my serotonin levels enough to recover. In other words, what began by trying to rebalance lack of serotonin with a top-up of dopamine becomes a wholesale addiction to the dopamine fix itself, leading to a devil-my-care attitude to whether I can even get back to a more level and contended state…in fact I lose the ability to remember such a state or be invested in returning to it!

What you have to remember with ADHD is that dopamine is in such short supply that when you get even a whiff of it, it is addictive and compulsive and acts as a driver. The ADHD system is in constant search of rewards like this, and not all rewards are created equal; but one can seem as good as another when you desperately need that uplift. As someone who NEEDS to feel driven all the time, who even feels like they are bored when the going is pretty idyllic (like at that concert I mentioned) then the need to reach out for that driven feeling can be even more compulsive than the incentive to reach what most of us imagine our perfect “recovered” health would look like (especially if that looks at all bland or uneventful, like all our issues would just melt away). For recovery to even compete with a dopamine fix, it has to be more exciting, more stimulating than anything to do with tackling a health crisis or it is already a lost cause.

In other words, you have to work at finding healthy stims, ones that arn’t fixated on crisis management and other such addictions, so that a recovered life comprises of enough juiciness to keep you invested in the dream of it. What is it that fills you with that thrilling feeling, that buzz in the stomach, the desire to leap out of bed in the morning (preferably a little later than 3am…) and can that interest be nudged away from anything to do with handling an existential crisis because, damn, you really need a break from all that, having spent far too many years handling one that never seemed to get any smaller, for all your efforts!

Playing neurotransmitter see-saw

Here lies the see-saw I have detected in my own ADHD, with serotonin sat at one end and dopamine at the other. I’ve noticed that a flare-up generally has a component of suddenly lowered serotonin, likely caused by a trigger (say, exposure to a toxin of some kind…in which I include things such as a sudden change of the weather, environmental exposure, severe lack of sleep or a disruption of the balance in my gastrointestinal status). Whatever the trigger, there is generally a feeling of lowered mood or sadness sweeping in when this occurs; in the wake of which this other part of me then grabs for the dopamine “fix” (like a heartbroken woman reaches for the pot of ice cream). In my case, because of the way I am wired, such a fix could just as easily be this massive stimulation I get from diving into yet another intellectual conundrum about this highly mysterious health status of mine; why has the flare-up occurred, what can I get my teeth into now. If I have the energy, and if I can rouse the dopamine hunger, I get to dive straight in and this determined pursuit of wellness feeds my need for stimulation. If I don’t manage to get it fired up, as happens sometimes, I crash into the inattentive, disengaged type of response to increased pain and that can take far longer for me to rally myself (and looks a lot like chronic fatigue syndrome).

On the one hand, I have to be so grateful for all this determination and drive in me as it has saved me, many times over. The hungry pursuit of information, of theories and solutions has taught me a great many things and facilitated a great many strides forwards, of which I am so appreciative and I dread to think where I would have been without them. From my efforts, I understand my own quirky body in ways that would have utterly defeated me if I had led any more “ordinary” kind of life and meanwhile my sheer determination, the tenacity to keep rising to the challenge and always seeing light at the end of every darkest tunnel…I have to admire that and feel proud of it. But this see-saw effect can’t be ignored. This is how a sort of codependency can start to occur between me and the illness, and its something I’ve been tacitly aware of for years…but which makes far more sense now I realise I am ADHD and therefore just soooo much more driven by this need to self-stimulate with high bursts of dopamine activity than the average person.

The “rarely discussed” link between ADHD and fibromyalgia

For the record, is anyone else out there finding that illnesses such as fibromyalgia are linked to ADHD? Yes indeed, there has been a blossoming of such studies, revealing this very thing (see articles with links below). According to rhumatologist Sebastián Moyano “We have observed a high prevalence of childhood and adult ADHD among adult patients with FM. Surprisingly, in almost half of patients, the diagnosis of ADHD had been overlooked in their childhood.” (Research Insights: Fibromyalgia and ADHD Carry Misunderstood Links). This catches my eye as I can’t help concluding that its all the many years of feeling my way around my ADHD brain “furniture” (as above) plus the pressing motivation to hide and overcompensate for my quirks that has put enormous strain on my health. Also interesting is that the same article highlights that, although research on this link betwen fibromyalgia and ADHD is starting to gather a head of steam, it is still “rarely discussed”, meaning providers treating fibromyalgia seldom consider whether to test for ADHD and, vice versa, when someone with ADHD has a myriad of odd symptoms, they are all too readily attributed to a need for more ADHD meds and not enough attention towards the management or investigation of their pain.

Its not that wild a leap, after all fibromylagia is a chronic pain disorder is associated with altered activity of the neurotransmitters involved in pain sensitivity; surely, the involvement of unusual neurotransmitter behaviour has to be a clue to a link. Shortage of serotonin has been widely associated with chronic pain, as I have already alluded to from my own observations. In fact, research has found people with fibromyalgia have abnormally low levels of not only serotonin but also noradrenaline and dopamine in their brains (NHS UK). “Low levels of dopamine probably contribute to the painful symptoms suffered by people with Parkinson’s disease and abnormal dopaminergic neurotransmission has also been demonstrated in painful conditions such as fibromyaliga, burning mouth syndrome and painful diabetic neuropathy” (Role of Dopamine in Pain). Confusingly, the same article refers to a study at the University of Texas that found that dopamine plays a role in maintaining chronic pain and that the removal of certain dopamine-containing cells had no effect on acute pain but reduced chronic pain. Perhaps his has something to do with the fact that dopamine isnot only involved in reward and motivation but also perseveration, which is the lingering or perpetuation effect of something long after the trigger has ceased (a frequent issue I have notice in my own health issues and various sensitivities). I think its fair to say the jury is still out on how all these neurotransmitters fit together; and all I have to go on is the effects noticed in my own body.

I am forced to consider that there really can be too much of a “good thing” when it comes to dopamine; and that seratonin boosting really is important. As ever, just like Goldilocks, I am in search of the “just right” position and it is still very much work in progress.

Appetite for life

Are serotonin and dopamine so opposite in their effects? Of note is that serotonin reduces appetite and dopamine increases it; I would extend that to say, dopamine increases appetite for life! If I can fuel myself with dopamine, I know I can get through anything as the hunger for survival is there, I don’t just get out of bed but rocket launch. Meanwhile serotonin feels more like the right fuel for plain sailing. If I’ve got enough of it I can glide along contentedly, much as I have this summer whilst enjoying better health and more gently active days. However, as soon as the going gets touch I need that dopamine-effect to turbo charge me…or risk foundering with chronic fatigue, brain fog and a such a total lack of get up and go that I can’t even begin to scale the walls of the deep well of health issues I fall down; instead, they just pile up on top of me and I drown. Its easy to see how the variables of ADHD have fed into the variables of my health.

There are all sorts of dopaminic activities available but when you are compromised in your health, they become very limited indeed. For instance, if you aren’t so easily able to do your exercise because you are in pain, exercise being one of THE most effective ways of boosting dopamine, then that rules out a lot of easy methods in one swipe. For me, its dancing or at the very least a walk but in the worse kind of flare-ups I can’t manage either so I am left to trying to find my thrills from a very gentle qigong session, which can help but is not in the same league as dancing vigorously. Resorting to comfort-food fixes is not an option if diet is your primary means of holding your health fairly steady as it can make you much worse when your diet wavers even slightly. If you have long-since eliminated other classic dopamine fixes, such as mindless consumerism, then you are limited in your options on those days when (without that urgent boost of dopamine) you feel like you might die of hopelessness due to your state of chronic, languishing pain and fatigue.

In fact (from my observations) that dopamine boost is required to get the very first foothold on recovery and help launch you from your languishing; but how about if your dopamine is chronically low, as per ADHD?

Those that have no experience of living with chronic, prolonged illness have no idea what it feels like; how desperate and dire and slippery that can feel from the inside, or how much you feel as though you are caught up in a loop, the catch twenty-two that imprisons you…damned if you do and damned if you don’t. No wonder, when I am struggling with all else, I tend to dive into the one thing left that is likely to give me a little pick-me-up; the intellectual buzz that comes from wrestling with ideas, diving the research, knitting my latest hypotheses together…yet the focus of them on “chronic health” also risks digging me in deeper.

Also, if I overdo the hyperfocus thing, and then burn out from the mental exhaustion I cause, espcially if all the info I have been gathering has worried or overwhelmed me, then I risk my health plummeting just as my serotonin is at an all time low, causing my morale to flounder too…and then I really crash!

I also risk spending way too much time lodged firmly in my head and not paying much attention to whatever my body wishes to communicate to me, which can quickly go from distracting myself from unavoidable pain to an unhealthy state of dissociation from my symptoms through turning them into the fuel for “research”, yet not really staying present with them, leading to a different version of languishing (compared to the inattentive type of ADHD where I zone out). Instead of being due to inattentiveness, this version is because I am paying big-time attention to all the ways my health is complicated so, really, I am now overattentive but in a highly intellectualised way. Plus, when I am like this, I fixate on all the different triggers in my environment (I can’t help it; its such a subconscious thing when I am having a flare-up; take today, when I am hypersensitive to noise and light and can hardly find a thing to eat that doens’t trigger me) and this can potentially set off all my symptoms worse than ever.

So, I’m basically using my ADHD trait to fuel a tireless mission to research the hell out of chronic health issues, for the benefit of myself and any others I can tip-off…but at what cost to my perpetuated chronic health condition?

Something else to fixate on

Clearly, I need my dopamine fixes from somewhere when I am like this; and life spent on the sofa convalescing doesn’t deliver much to a person with ADHD needs. So, why don’t I go and find something else I can intellectualise about, for that same cerebral thrill; something equally juicy, to distract me? Believe me, I have tried but there is no easy contestant as an alternate pursuit of the mind when the primary one feels existential and urgent and pressing…a survivalist urge, if you will.

A “hobby” on any other topic you could name is not going to hold that same feeling of knife’s edge titilation as something that feels as though its a case of do or die. There is nothing, and I mean nothing, like a cliff-hanger crisis to spur human beings into the kind of everyday genius and determination that can be thrilling to take part in, which is why extraordinary people achieve extraordinary things when the stakes become high. It takes that degree of pressure, of necessity and contingency, faced against odds that seem to get higher each time my health takes a turn for the worse, for me to inject myself with the “fix” that, eventually, stimulates me enough to flip my coin back to the healthier, more stable side.

What now?

The thing is, like any hard drug, it seems to take more and more of a crisis each time to get the same effect and turn my health around. Or, at least, this is a trend I have noticed and am wary of it, because where will it lead if I don’t do something about it now? I am staring down at my own Achilles heel, which is this propensity to crave, to covet, to relish my own crises, the same way some part of me (sleep deprived though it is) relishes waking up at 3am because its quiet enough to think its big-juicy thoughts. Until I gain new interests and motivations that thrill me and offer the same amount of drive and hunger to propel myself, I risk being stuck here and typecast as someone with chronic illness, which is not what I want for my life.

Diving into the mysteries and positives of neurodiversity is the most hopeful contender because here lies something juicy, largely unexplored and hugely positive as well as fuelled by a lifetime love of autodidacticism (I am one of those people who gain a great rush from following an autodidactic path) and using myself and my own experiences as the pivotal focus of all my enquiry (since I have always been most confident in the the laboratory of myself). Its why so many of my posts now lean towards this topic, rather than chronic health per se (except where they cross over, as here).

As ever, there is no grande conclusion to this post; merely the desire to share out loud in case anyone else can relate and it helps them to spotlight their own tendency to, at least at some level, “gain something” out of their own health or other crise., Once aware of this, there is an increased chance of substituting other dopamine fixes that are less likely to perpetuate that which we wish wasn’t happening to us any more; to break out of the addictive cycle and truly recover a baseline that tends less towards a see-saw kind of behaviour and which gets its necessary thrills (and a hugely positive step is to finally own that your ADHD personality really NEEDS its regular thrills!) yet in a far more wholesome, less crisis-oriented way.

Related

Fibromyalgia Patients Should Be Screened for ADHD, Study Says

Research Insights: Fibromyalgia and ADHD Carry Misunderstood Links