I first became severely unwell with chronic fatigue syndrome (CFS) and fibromyalgia back in 2005 when I was in my mid-30s (though at the time I had no idea what was going on) after receiving a flu vaccination, which led to a fluey episode from which I never seemed to fully recover. Strange effects such as sudden low blood pressure, odd sensory sensations and sensitivities, headache and vision issues added to the effect, and my preexisting back pain became so severe I was having to use a TENs machine sitting at my desk at work and to go for acupuncture session in my lunchbreak, since I began having such adverse reactions to pain medications I had to wean myself off them. My health deteriorated very abruptly over the following year, to the point I had no option but to stop work.
The beginnings of this coincided with a period of heightened work/financial stress following a very long stint of emotional stress relating to divorce. I already had long-running issues with back pain relating to a road traffic accident over a decade earlier and had been cautioned about doing office work, though I felt I had no choice. My 20s had been litered with weird symptoms that I now relate to early episodes of POTs, Reynaud’s phenomenon, neuropathy and hypermobility disorder (although I had no idea what was happening to me at the time), worsened by stress and emotional trauma, of which there was a great deal. Now, the intense and widespread pain became relentless and other, often bizarre, symptoms added on all the time, to the point that decision to stop work was made for me as there really was no other choice in the state I was in. Doctors were as bewildered as I was and, back then, very little was known or shared about fibromyalgia, chronic fatigue and other chronic illnesses (they tried to default to the bucket diagnoses of anxiety or depression, at which point I stopped seeking medical opinion) so I was left to research my way through very limited information on the much reduced version of the internet at that time, whilst trying all kinds of alternative therapies and approaches. It took constant tenacity to keep pushing forwards, on top of being a full-time parent and coping with “normal” family life with, thankfully by now, a supportive partner by my side.
Over the next 17 years years to the present time, I passed through a whole gamut of challenging issues, including fibromyalgia pain and waves of intense chronic fatigue, irritable bowel syndrome, multiple food, chemical and environmental sensitivities, various manifestations of dysautonomia including postural tachycardia syndrome (PoTS), interstitial cystitis, temporomandibular joint disorder and dental pain (not caused by teeth!), myofascial pain syndrome (which thankfully responded well to years of myofascial therapies), migraine, tinnitis, peripheral neuropathy and occipital/trigeminal neuralgia. My body was at burnout point and the deep fatigue came in waves that could knock me out for a week, or a month.
Over the ensuing years, I tried physiotherapy and osteopathy, accupuncture, relexology, pilates, meditive walking, Bodytalk, EFT, NLP, regression hypnosis, various other trauma release approaches, therapeutic touch, cransiosacral realignment, hands on massage, myofasicial pain therapy, naturopathy, NES Health, aromatherpy, ayurveda, yoga, kinesthesia, energy medicine, reiki, AuraTransformation, elimination diets, numerous supplements, sound therapy including crystal bowl healing and gong baths, Nia dance, Smovey rings for somatic healing, brain retraining, Sensate meditions, journalling, Havening, qigong and probably a few other things I’ve forgotten to list. In short, I never stopped seeking an answer to my problems and put every resource I had into reclaiming my health.
Things ebbed and flowed after I gave up work and began various alternative therapies but were set back by two unrelated emergency operations (inlcuding 8-week progressed ectopic pregnancy termination and falopian tube removal) in one week, in 2008, which threw my health back into total disarray. I now understand, retrospectively, how much operations and anaesthesia, not to mention hormone upheaval, can throw the hypermobile body into long term disarray but I had no idea at the time. Around that time I noticed, once again, how adversely I reacted to pain medications I was prescribed and was forced to become knowledgeable about alternative approaches. Certainly, hormones were complicating the picture and I began using natural progesterone on the advice of a specialist in 2011. In fact, that year I saw two Harley Street experts and made a giant leap of headway after some sessions of NLP. This allowed me to get a grip on my recovery progress for the next couple of years, making considerable headway, starting meditation and mindfulness practices and massively improving my diet and lifestyle.
Whilst, for a window of time, fibromyalgia didn’t seem so bad, sensitivities to chemicals, including pharmaceutical medications and other environmental exposures, seemed only to increase year-on-year, culminating in mast cell activation syndrome (MCAS), which is now well under control through diet and supplements, mindfulness practices such as meditation and the Gupta Program (see below). I remain intolerant to gluten and still have to avoid several envionmental triggers but my inflammation and allergic reactions to foods and substances feel far less constricting now (partly through avoidance of primary triggers, along with steadily increasing tollerance for those that are harder, or which I don’t want, to eliminate). Thankfully!
Nonetheless, I have been taken on a longer journey, one of peripheral neuropathy and electrohypersensitivity, which remains an ongoing problem as it trip-wires my nervous system into PoTs episodes, heightened pain and chronic fatigue; my longest lasting issues. It began when, in 2015, triggered by several procedures to remove all of my mercury-containing dental amalgams, which I became aware were a source of toxic exposure after one of them cracked and sent me into a major flare-up of symptoms, my health went into a prolongued dip for the four-month duration of those proceedures. During that time, I had an adverse reaction to a Nitrofurantoin antibiotic (known for its potential link to severe, even irreversible nerve damage, I later discovered), prescribed for a severe kidney infection and, straight afterwards, developed strange, tingling/pulsile sensations to my nerves that refused to abate, even months later.
Shortly thereafter, I developed severe electrohypersensitivity, to the point I could not use a mobile phone or any other mobile device connected to wifi or cellular signals without experiencing sharp, pulsile pains, migraine, burning skin, dizziness and low blood pressure, vision issues and wipe-out fatigue. Whilst no longer so dramatic, this issue is ongoing if I am subjected to exposures for very long, so I now mitigate the very worst effects through lifestyle modifications (EMF reduction and protection) and no longer use wifi on a regular basis at home. My occassional peripheral neuropathy in fingers and toes diversified to torso, chest, back, neck/face and other areas and neuralgia began to occur to my pudendal, trigeminal and occipital nerves.
This development coincided with the beginnings of menopause, which was also when I experienced regular migraines and allodynia (burning skin, intolerance of certain clothing), much more regular interstitial cystitis and relentless tinnitus. I also had a physical collapse which took three months to recover from, during which time I saw a specialist who confirmed a major fibromyalgia episode and speculated that menopause, which had now passed, was having an impact. It also came to my attention I was having issues with hypermobility, something I have had all my life but which was now presenting a real problem with mobility, digestion, severe headaches and joint stability as my levels of oestrogen reduced, impacting my already compromised collagen.
This all requires careful management, ongoing, using natural, hollistic means (since I am so hypersensitive to pharma meds, thus I choose not to use them at all). I learned about the vagus nerve and introduced CBD and other natrual supplements to support the nervous system whilst expanding my daily movement and mindfulness practices to encourage a robust state of, not just core strength but, of stoic circumspection and mindful calm and these are ways I manage my pain and mobility challenges, day after day. Of particular importance is that I walk in nature almost every day (and always have) and, when I can, I do movement to music (dance of sorts) and these, combined with yoga and quigong, keep me moving and positive. I also use my art and creativity as a meditation and make each and every day a celebration of all the positives.
Additionally, and of no small importance, I have come to realise that I am neurodiverse (in more ways than one). I already knew I had synesthesia, in fact I was part of a study for this over 30 years ago, and that I am a very Highly Sensitive Person (see psychologist Elaine Aron’s criteria). Another term used, and which applies to me, is Sensory Processing Sensitivity (which is “not a disorder, but rather an innate trait…not associated with dysregulation, but with awareness, depth of processing, and needing time to process information and stimuli”).The penny then dropped (at the age of 51!) that I also have underlying hypermobility typeEhlers Danlos Syndrome (EDS), also ADHD, that I am autistic, an empath with highly overactive mirror neurones and someone who classifies as “2E” which means that I am both gifted yet with some of the deficits/challenges of being neurodiverse, along with all five classifications of over-excitability (all discussed at length here). The thing is, being 2E, your gifts can become so overshadowed by your “defecits” (areas where you struggle or shy back from drawing attention) that they all but disappear out of sight while, meanwhile, your giftedness artificially masks all the ways you are struggling and desperately need accomodations and help. So, again (as with female autism and ADHD) it is so easy to fall through the cracks and spend a lifetime flailing around wondering “what is wrong” with you, manifesting as all kinds of challenges that remain unaddressed.
I strongly feel that these overlapping traits go a long way way towards explaining why I was susceptible to so many, equally overlapping, chronic health conditions when, progressively, life became too physically and emotionally overwhelming for me to handle, given I did not realise why I was different, nor did I ever receive any accommodations or support for them. In fact, learning about these, how they are often interlinked, about my sensory processing challenges and also about my introversion using Myers-Briggs and Enneagram tools, has been the biggest piece of the jigsaw as I continue to build a bigger picture of my health. Coming to realise that increased sensitivity is a major factor in so many cases of autism and ADHD, both of which can result in sensory processing overload and adverse reactions to medications, has been a major insight.
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 challenging adulthood, during which I often felt as though I was “wired” differently to other people and struggling to comprehend the ways of the world, played no small part in this wholesale collapse of my health. EDS became most apparent following the oestrogen drop of menopause and then the link from EDS to autism opened up the rest of the box. I must add, ever increased awareness, bottomless curiosity and a willingness to draw dots together, noticing trends and patterns, have been essential tools on this health journey and we owe it to ourselves to develop these skills.
Whilst I might seem to have gathered a long list of condition lables, I choose not to regard myself that way and have never lost my determination to heal. In early 2021, I began using The Gupta Program, which draws together many of the healing approaches I have researched and tried over the years into one coherent recovery program with an extremely good track record. Those practices form the basis of the mindset of health and happiness that underpins every single aspect of my life. Most of all, I have developed my own daily practices for mindfulness, positivity, gratitude and movement and these are at the very core of a life that is not defined by illness but by the potential to become more of who I am every day.
In fact, daily mindfulness practices (meditation, mindful movement using yoga, qigong and dance, and tirelessly working on staying more present) plus copious journalling, including a gratitude list compiled every evening, are THE most powerful methods I use, every day, to increase my self-awareness and learn how to thrive, in spite of and often because of the journey my health has taken me on.
I began this blog about a decade ago, shortly after my account of how the practice of art had transformed my outlook of my health and other circumstances got published in a self-development book distributed worldwide (after I was approached by the publishers because of my writing on another website). The inspiration for doing so is expanded on below. I remain a passionate advocate for looking at the bigger picture when it comes to our health, of joining all the dots and of noticing all the overlaps between circumstances such as stress and the various different or unacknowledged expressions of neurodiversity, any childhood or other trauma lurking in the shadows and anything else that isn’t being routinely addressed when we tackle these “mystery” illnesses that seem to manifest out of the blue. We need to stop looking at them piecemeal and draw all the information together, to see what they have to tell us about ourselves, what was being overlooked and left bereft while we were try so hard to conform to versions of who we are that are not really who we are at our core. Illnesses like these stop us in our tracks and call time on the old ways of being that no longer fit who we are. Often, they are an invitation to look deep into the corners of our life and do some real work…the kind of work that brings us into love and acceptance of who we really are, beyond the stories and expectations that get overlayered by our crazy and demanding lives. Often, there is an opportunity to be found in our own disarray and, once we find it there, it doesn’t stop giving…not ever, for the rest of our lives.
That’s the potted history, as of 2022. Below is my original introduction to what inspired me to create this blog and why it is different to some other health sources on the internet.
When I first set out to create this health blog, several years ago, in a world already full to the brim with health blogs and social media accounts sharing lifestyle tips, I had just an inkling of the unique angle that I had to offer, born of my particular way of looking at things very broadly (you could say, outside of their “box”). This instinct pushed me forward to get started on the project, even when I had so many doubts and only the vaguest idea of what I had to say.
I let go of “what do I know?” and allowed that, in my own way, I had expertise to offer; which would arise as and when it was most needed.
By then, I had been in recovery from a complicated tangle of chronic health issues for several years, after my health “crashed” in 2005. The years in-between had taken me on quite a journey or, rather as I now see it, I had taken myself on this amazing journey of self-discovery, using my health circumstances as the hand rings and foot markers to guide me along the route.
At this point, I feel I should interject to explain what those health challenges “present as” these days (as opposed to the long list of hats I have tried on over the years). Whilst fibromyalgia and chronic fatigue have remained central to my experiences for years, and my life-long high sensitivity has become another broad area of exploration, it is neurodiversity that sits right at the centre of my experiential conundrum…something I didn’t fully realise until 2019 at age 51!
Therefore, if you dip back though my annuls you will find posts that are much more preoccupied with the mystery that is fibromyalgia, then nerve pain and other sensory issues and finally coming to land on the unique “wiring” that set me up for such a diverse range of experiences – autism. The breadth of topics played with in this site is also testament to my distinctly autistic way of experiencing (and trying to make sense of) the world; my non-linear or “octogonal” thinking (for more on that see my post on the topic).
I already knew I didn’t want to set out to repeat all the, many, other blogs about learning to “live with” these so-called chronic health issues and challenges, treating them as “brokenness” or eating/exercising/treating your way back to better health. Nor did I want to peddle insincere-sounding reassurance or admiration for the long-suffering reader, to share stories of victimhood or mindsets of defeatism. In particular, I didn’t want to cultivate that air of self-congratulation or wallowing in hardships that is so often rife in health-blogging land. I was well aware that the more attached we become to our challenges, the harder they are to work through as they stick to us as part of our (business, social or even our core) identity: this was not what I was choosing for myself.
Rather, I wanted to deliver the essence of that thing, deep inside myself, that had kept me pushing forwards with unwavering optimism and almost bewildering tenacity. This “thing”, this powerful core aspect of me, has insisted upon feeling whole and intact, whatever life or my body seemed to “throw at me”, and the more I have tuned into it, the closer I have got to manifesting that reality. You see, never once did I lose this sense of “everything being all right…really” through all the dark-tunnel years of fibromyalgia, electro-sensitivity, chronic fatigue (or whatever we choose to call these things, since labels are so very arbitrary and can be such a sticking-point to true or sustained recovery). I always sensed there was a much bigger picture emerging to the surface of my life through what presented as all these weird and wonderful health challenges and I still know I was right.
Whatever your particular “challenge”…it could be health, could be life’s so-called external circumstances such as finances, work or family issues…the raw materials that I share here are so often clues to how to go about addressing any of those situations in a broader, more insightful, way that suggests to you the wonderful possibility that everything is working in your favour. I refer to them as clues because those things that feel like they are going most “wrong” with our lives often hint at ways in which we have become separate or dislodged from a fundamental aspect of self, a sort-of core truth, leaving us feeling perpetually misaligned with our own lives, going around in circles. Our journey back to the kind of wholeness that delivers greater joy, better health etc. is like a trail of breadcrumbs left by the clues of our “symptoms” as we examine them with our widest, most instinctual and least pre-judging set of “eyes”.
A magical thing happens when we get even close to wholeness; we feel an updraft, as it were, lifting us up to a new level of experience and we become the spiral that breaks us out of the tedium of circles. Suddenly, we are viewing things from a more advantageous perspective than before and everything seems clearer, crisper and more vibrant, somehow. Without having to “solve” anything, we make better sense of some of the chaos that once bewildered us and we love ourselves more completely, less conditionally, than ever before. We can tell when we are getting there as we feel the joy build in our heart and the excitement in our gut; life starts to feel appealing again, even with all its difficulties. Its as though nothing has changed yet everything has. Its fascinating how better health almost always comes in this feeling’s wake; as soon as we surrender to the not-knowing part of how we got there, since this is not to do with “figuring anything out”.
When we dare to step outside of the mainstream, beyond only hearing what medical science has to say or what other people think is possible for us, beyond an ingrained sense that we are “small” and “know nothing”, that someone else needs to step forward and “help us”, things have this miraculous way of coming together, conspiring with us to deliver us into completely new territory, where we feel…yes…more whole than we ever did before.
I am testament to the reality that this open-hearted clue trail has led me directly to a degree of wholeness and of unconditionally blissed-out love of life that was completely unknown to me before my health supposedly “crashed”; that crash serving as the much-needed catalyst to deliver my highest and, certainly, speediest evolution…ever (out of many lifetimes of playing with, I suspect, extremely similar themes in order to become the expert of them). In fact the coming-together of many sources of greater understanding, gathered across lifetimes, converging around the pivot point of YOU, is what a healing journey is all about. It’s as though we regather many scattered parts of ourselves; all these apparently broken aspects that we once threw out on the wind, to serve as scouts and experience-collectors, and as we piece that disparate jigsaw back together again, we realise their amalgamation (however odd its uniqueness may seem, compared to a more mainstream idea we once had) looks like the wholeness we have long searched for. This is who we are.
When you also allow that what YOU are going through is making you the absolute expert of YOUR particular circumstances, allowing you to know and own things about yourself that no other party is qualified to tell you, then you too will experience a new kind of wholeness born out of self-responsibility; that is, taking responsibility for the experiences you are having. Paired with its seeming opposite factor; that, really, we know nothing so remaining open and surrendered to all possibilities is the only way forwards, this stance becomes especially powerful…a sort of super-power. This dichotomy (I know everything…and yet I know nothing) made whole…as us…is like a giant key to the doorway of selfhood; and better health and wellbeing lie just the other side of this, already waiting for you.
An overarching desire is to be of service through the sharing of these experiences; to shine a light for others in case what I offer or play-around with might be of help in their own unique journey. Writing about my health experiences is something I do for love and I spend a great deal of my time doing it, purely for that thing – love. You will find plenty of that love here.
In addition to Living Whole, I write an even more longstanding blog; one that goes deeper into some of the same themes and off into many other directions, in an (if that’s possible) even more playful and self-exploratory way. That sister blog, which I started in March 2011, is called Spinning the Light and I invite you to take a look.
Helen White 2016
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.