Its time (as I rewrite this in summer 2023) that I refreshed the introduction to this blog – which focuses on what it is like to live with chronic health conditions whilst trying, very hard, to impart some of the breakthroughs and positives – in order to make it more succinct than it used to be. The likelihood is, many people finding my blog are probably suffering from similar health issues and feeling chronically overwhelmed…already…without my adding to their plate!

Here’s another trajectory-change I want to make…I want to now gear this blog towards the mindset of not having to live with these conditions since I vehemently believe that we really don’t have to (whatever “mainstream” might have to say about it). Chronic does not have to mean “forever” in my view.

I am also going to cut to the chase on something pivotal to this blog: I discovered, many years into my chronic illness phase, that I am neurodiverse, best described as a combination of both autistic and ADHD (AuDHD) along with a few other diversely wired traits, although I defy many of the stereotypes of what this “should” look like. This single detail has played a leading role in my chronic illness status, in my view, so that the two topics are almost impossible to examine isolation. In a very large way, this blog now pivots on the topic of what it is like to be neurodivergent (especially as a late-diagnosed woman) and how to navigate through both he challenges but also the many positives of being “differently wired”.

In fact, being neurodivergent contributes, majorly to why I bother to write this blog at all. Akin to what I’ve noticed about a lot of neurodiverse people, who often make such great coaches, bloggers and podcasters, I share the strong ability they often seem to have to make connections and to have life-altering epiphanies, also to now how important these realisations are, plus the empathy and the real excitement of wanting others to get to that same point of breakthrough. These qualities, especially the empathy and desire to help others through my own hard-won experiences, is really strong in me but also a lot of self doubt, as in, who am I to try and sound knowledgeable about anything but then, encouraged by feedback from readers who often tell me I have been a big help, and because I love the sense of optimism and purpose it gives me to put my experiences our there, I keep on writing this blog. 

Learning I am AudHD has been like finding the universal spanner for unlocking the many differently shaped nuts and bolts of my system. Since discovering this, I’ve made countless yards of headway healing old traumas completely out of the body that were not properly addressed at the time they occurred (finding, to my joy, that they are now fully neutralised since the only thing that kept them fed was the very avoidance of them!) and then, from hereon-in, learning how to process emotions far better in the very moment they arise (of course, that is work in progress…). Also much headway noticing patterns (not only those I constantly perceive in the outside world, which has been a lifelong hobby but…) mainly those various internal ones that shed light on my motivations, my unique organisation systems, my preferences, my gifts and my very drive to be fully alive and thriving. What I have also discovered is that I am not just this great big pot of deficits that I once believed myself to be, but someone with strengths, preferences and abilities that are merely different to mainstream…not flaws…and when I get to know them, advocate for them and live according to them, life gets so much more viable, comfortable and joy-filled. It’s been quite the revelation!

Before I begin, I also want to cut to the chase and urge you to explore what I have shared (in my post My most recommended approach to healing from chronic conditions, period) about TMS and the work of Dr John Sarno as his approach to recovering from chronic conditions has been my most effective so far, and I am still reaping the daily improvements.

If there are any shortcuts, I would love to be able to offer them and perhaps shared-insight could provide a few clues. Although I have had chronic illness for over 18 years now (and brewing long before that) it is only quite recently that I have begun to turn on the lightbulbs that help me to understand and navigate my conditions somewhat better, even if I am not able to solve them quite as elegantly as we all dream of (though I am getting there). With increased understanding comes better management of day-to-day life and that counts for a lot, when it comes to avoidance of symptoms or being able to bounce back when they occur in their largely unpredictable and life-disrupting way. So I share this in the spirit of helping others to more-quickly identify similarities with their own quest for recovery or even in the route that got them to where they currently are, not so we can all get stuck in an analysis of “the past” but so we can more-quickly move on from it.

In a nutshell, I came down with Myalgic Encephamialitis / Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia back in 2005. ME has a wide constellation of symptoms (in fact, both conditions do) so there is a lot to deal with, research and try out when you are dealing with these things and it can take years to feel as though you are making any headway with understanding what is going on in your body. It was only as recently as 2019 that I first began to play with the idea that these conditions, and the numerous other complications of my health that had come to light by then, such as Ehlers Danlos Syndrome (EDS) and Dysautonomia, had something to do with the fact that I am neurodivergent. Slowly but surely, I have come to realise…and accept…that I am both autistic and have ADHD (AuDHD) and that both of these things had gone undiagnosed all of my life, up to the age of 51.

I’m not suggesting, for a moment, that everyone with ME or fibromyalgia is neurodivergent, although I suspect that many of them might be. I can only speak of my own experiences and the conclusions I have started to draw, backed up by research that is emerging. In my view, both the lack of a diagnosis (along with any support systems, accommodations, expectation management, self-understanding etc. that I might otherwise have had access to) and my neurodivergent “wiring” itself have contributed a large, if not determining, factor to my chronic health status. There are many known links between the conditions I have mentioned and autism, for instance, and more such links are starting to come to light as more and more late-diagnosed individuals start to explore, and discuss, what their neurodiversity has meant to them in terms of wellbeing and health. Please take a look through my various posts, searchable by topic, and also the Neurodivergence Resources section at the top of the page for more information on all of this.

Because (whilst it was started as a way of sharing my lived experience as someone with ME and fibromyalgia) this blog now deals primarily with exploring the many areas of cross-over between all of these factors together and really pivots, to a very large degree, on the topic of neurodiversity, as I mentioned before. That is not, at all, to say that what I share about living with chronic conditions isn’t relevant to you if you are not neurodiverse but that I tend to see things through my own neurodivergent experience and, sometimes, that even gives me an edge, a certain way of seeing things outside the box, joining dots or discerning patterns that sometimes get overlooked.

Neurodivergence also comes in many forms, another primary topic in this space. So I would say to you that if you are living with chronic illness, struggling to make sense of it and yet do not consider yourself to be on the autism spectrum or have other neruodivergent traits (for instance High Sensitivity (HSP), Giftedness, Twice-Exceptionality (2E), Overexcitability, Gender Diversity, Synaesthesia, Dyspraxia, Dyslexia, Dyscalculia, Dysgraphia are just a few other examples) then at least explore this blog with an open mind. Why not look up some of these tags in my blog or elsewhere on Google and see if there are links to conditions you are dealing with. For the record, I am a polysynesthete (having multiple types of synesthesia) and write, a lot, about the cross over of this with high sensitivity and chronic pain.

Everything that I offer is from the perspective of my lived experience of chronic illness and neurodiversity. I am not medically trained and do not profess to be an expert, except by direct experience, but what I aim to offer is a resource comprised of relatable experiences and clues in the dark for other people exploring their health status as I have had to do…and, in fact, as all of us with chronic conditions such as ME are forced to do for ourselves given these conditions are still so widely misunderstood, stagmatised, under-researched and generally swept under the carpet.

It’s down to all of us to do our own detective work, as far as we have the stamina to do, and to share as widely as we can in the interests of helping others in a similar boat. This is why I have poured heart and soul into writing this blog, for quite a number of years now, and will continue to do so whilst it brings me enjoyment to do so.

Now for the longer introduction:

As already mentioned, I first became severely unwell with ME/CFS and Fibromyalgia back in 2005 when I was in my mid-30s (although it took quite a while to land on these labels) after receiving a flu vaccination, which led to a fluey episode from which I never seemed to fully recover. I became so deeply fatigued that there were days when I felt like I was having to walk through armpit high snow and this was taking a toll on my ability to work. Strange effects such as heart palpitations and arrythmia, parasthesia, numbness, environmental sensitivities, gastrointestinal symptoms, headache, brain fog, orthostatic intolerance, hypersensitivity to noise and light, hearing and vision issues soon added to the flu-effect (its striking how closely this resembled the symptoms of long-covid long before covid came on the scene and there are, indeed many cross-overs). My preexisting back pain, from an old injury, became so severe I could hardly get through the day, gradually turning into such widespread pain that every part of me now hurt most of the time and I had frequent episodes of intense jaw and rib cage pain or spasm. Eventually, I was given no option but to give up work altogether to focus on my mystery health.

By the way, I’ve recently switched from using the label “Chronic Fatigue Syndrome” all the time in favour of referring to “ME”. Reason being, the former implies that fatigue is the main or only symptoms of the condition whereas it is only one part of a complex, multi-system condition with many groups of symptoms (such as dysautonomia, chemical or environmental sensitivity or widespread pain, to name but a few). Continued use of the label CFS was making me feel as though I was stoking the already widespread misunderstanding about what I am having to deal with on a daily basis as there is so much more going on here than “tiredness”!

Looking back, many of my issues began much earlier than this (in a way undiagnosed neurodiversity has helped to make sense of). When illness first swept me over, I had recently been through a period of extremely heightened stress and this sudden crash…or autistic burnout…was the apparent result.

Over the next few years, my symptoms waxed and waned, taking another turn for the worst after a couple of surgeries and then following the removal of all of my mercury-containing dental amalgams. After that, neuralgia and environmental sensitivities increased and now included electro-hypersensitivity. Just a few years after that, my hypermobility (a lifelong trait, which I finally realised was EDS) became much more severe, coinciding with menopause, and I began to experience Postural Orthostatic Tacychardia (POTs) and various other symptoms of Dysautonomia. It was as a result of my research about these that I happened upon their link with autism and began to question “Am I autistic?” The four years since have been spent immersing myself in as much information as I can about late-diagnosed female presentation autism and ADHD and my conclusion is, yes I most certainly am.

This was a lot to take in and has taken four years to settle down in my mind, not to mention the knock-on effect it has had on my perspective of absolutely everything that has happened with my health to date. ME, considered by itself, is an utterly ruthless condition. Even in those with a milder dose, it likely alters everything about their life down to the very finest detail, the choices and limitations of which largely amount to a case of “managing” their symptoms. The complications of ME are wide ranging, including arbitrary sounding things such as costochondritis or, as I have mentioned before, environmental sensitivity and dysautonomia (review this list of related conditions). If there is one shortcut I would urge you to consider with ME, by the way, its to look into the high-dose thiamine (vitamin B1) approach that I have written about several times as it has enabled me to make strides in my recovery. Chronic thiamine deficiency seems to be rife in some people, not least those who are neurodiverse.

My health has, likewise, peaked and troughed in terms of symptoms over the years but my life bears no resemblance to how it would look without ME and, when I have a flare-up, my quality of life is very poor for as long as that period lasts. This illness is surely one of the most isolating that there is, and in no small part because it is a lifelong sentence. When I occasionally get back onto a level that equates to reasonable quality of life it means that I am still having to live very carefully indeed, by anybody else’s standards, knowing that this could change for the worst at any moment. That said, there are people out there with far worst cases than mine, who seldom see outside their bedroom walls, yet this condition is still, very largely, mishandled and misunderstood by medical practitioners and the public at large. This is not a cognitive illness; you cannot just think yourself better by being cheerful or ignoring it, nor does “getting out more” or “doing more exercise” make it go away and, in fact, these approaches typically makes it much worse due to post exertion malaise. However, it is quite another thing to realise that you can brain-train yourself out of these conditions (you really can make significant inroads by tackling the subconscious origins and breaking the connection to how your body, inappropriately, responds to certain triggers) and that is where Dr Sarno and the TMS approach come into their forte (as mentioned again below and you will find several posts on this topic). I personally believe such mind-body approaches offer the best hope.

I strongly feel that my previously undiagnosed autism and ADHD go a long way way towards explaining why I was susceptible to chronic health conditions, partly because of just how overwhelming life can be due to sensory processing, social and executive function challenges that require you to require work much harder than other people in order to do well and be accepted, plus the sheer loneliness and isolation you can come to experience after decades of feeling as though you simply do not fit in, no matter what you do or how much you strive to mask or compensate for your differences. In fact, the toll taken from all those years of masking behaviours alone is now a widely discussed health topic, especially amongst late-diagnosed women. All of those factors can take a huge toll on your health (feeding into a TMS response by the body as its own attempt at self-defence), the more so when you have gone on for years without realising there is a neurobiological explanation for it all thus believing you are mechanically broken. Moreover, there are genetic factors and other biological predispositions to do with autism that are now being linked to having a certain susceptibility towards “trip-wiring” your health for no other conventionally obvious “reason” and these mostly hidden factors (such as thiamine deficiency, oxalate overload and low glutathione levels, for example) are some of the topics I discuss in this blog.

I believe that neurodiversity is a truly wonderful gift to be explored, but that the fact my autism and ADHD status had gone completely undiagnosed all through childhood, higher education and well into a fairly challenging adulthood, during which I often felt as though I was “wired” differently to other people and was not being well understood by them, played no small part in the wholesale collapse of my health.  Although I have been hypermobile all my life (there is a strong link to autism), this became most apparent following the sudden oestrogen drop of menopause and, from then on, what pieces of research I managed to find out about the links with neurodivergence began to shine a light on the connection to some of my physical foibles.

I must add here, ever increased awareness, bottomless curiosity and a willingness to join the dots, noticing trends and patterns across the bigger picture, have been essential tools on this health journey and these particular skills or traits rely wholly on my autistic mind along with its propensity to hyperfocus on topics that interest or intrigue me, asking the sort of “outside the box questions” that lead into new realms of discovery and moments of breakthrough. The biggest open-minded exercise I have taken on to to date is to re-examine all of my health conditions through the eyes of TMS and the work of Dr John Sarno (who spent his career examining the roots of chronic pain) and adopting his methods, which has been my most effective approach to healing so far and still continuing. I highly recommend you read my posts on this topic and, most importantly, explore his books, which thoroughly explain what TMS is and how we can tackle it day after day until these conditions lose their grip on our daily lives.

Conditions like these tend to stop us in our tracks and call time on the old ways of living our lives and that can feel negative. However, what I have also found to be true is that I have outgrown some of those old ways of living and that all these years of chronic illness have brought their own gifts, which is not to say that I am glad to have been struck down and kept from doing many of the things I always hoped I would be doing with my life but to say that I always prefer to look on the bright side and that is another aim of my writing in this space, as in, to shed light and encourage others to see the positives. Also, if I am being perfectly honest, I much prefer the person I have grown into as a result of all these hardships and experiences and so, with hand on heart, I don’t really regret a thing…but I do plan to move on.

I sincerely hope that, if you have read this far, you manage to find something in here to be useful or encouraging for your own journey.

Disclaimer:

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. This article does not constitute a recommendation or lifestyle advice. Opinions are my own based on personal experience. Please seek medical advice from a professional if you are experiencing any symptoms or before you change your diet, your nutrients, your habits or anything else.