I first became severely unwell with Chronic Fatigue Syndrome (CFS) and Fibromyalgia back in 2005, after receiving a flu vaccination, which led to me contracting flu from which I never seemed to fully recover. This coincided with a period of heightened work/financial stress following a very long stint of emotional stress and at a time when I already had long-running issues with back pain relating to a road traffic accident over a decade earlier. Now, the intense and widespread pain became chronic and I had a whole gamut of other “mystery symptoms” to contend with, including (but not limited to) Irritable Bowel Syndrome (IBS), Food Sensitivities, Postural Tachycardia Syndrome (PoTS), Vulvodynia, Interstitial Cystitis (IC), Multiple Chemical Sensitivity (MCS), excruciating Temporomandibular Joint Disorder (TMD) and Myofascial Pain Syndrome (MPS) though, thankfully, the latter two conditions have receded following many years of myofascial release therapies. I was at burnout point.
Things ebbed and flowed for a further couple of years and even became more steady for periods of time but shifted downhill again following two (unrelated) emergency operations, in 2008, which threw my health back into disarray. I made a giant leap of headway in 2011 after some sessions of NLP and 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. However, sensitivities to chemicals, including pharmaceutical medications and other environmental exposures, seemed only to increase year-on-year, culminating in Mast Cell Activation Syndrome (MCAS).
By 2015, shortly after several procedures to safely remove a number of mercury-containing dental amalgams that I had been adversely reacting to since one of them cracked, I developed severe Electrohypersensitivity (EHS) which is ongoing, although I now mitigate the very worst effects through drastic lifestyle modifications and, mostly, EMF avoidance. By then, I had also developed severe all over body migraines, which at one point plagued me consistently for about a year, allodynia (burning skin) and a sort of generalised neuralgia centred on the nerves of my head (including face, jaw, teeth), stomach and pelvis, triggered by a multitude of stimuli. This was when the term Central Sensitivity Syndrome (CSS) first hit my vocabulary and I became interested in the vagus nerve. Again, through sheer determination and never loosing my faith that I could heal, I managed to get my all-over migraines mostly back under control but menopause hit me hard and chronic pain, fatigue and multiple sensitivities have continued. In 2018, the tinnitus that had been intermittent for several years became much more shrill and apparently permanent.
Additionally, and of no small importance, I have come to realise that I have underlying hypermobility type Ehlers Danlos Syndrome (EDS) plus Asperger’s Syndrome, both of which, in ways discussed at length in this blog… I feel…go some way towards explaining why I was susceptible to so many overlapping chronic health conditions when life became too physically and emotionally overwhelming to handle in my mid 30s. I believe the fact my defined Asperger’s traits had gone completely undiagnosed all through childhood, higher education and well into a challenging adulthood played no small part in this wholesale collapse. EDS became apparent when my connective tissues became suddenly unreliable directly following menopause, which added a whole new dynamic to my lifestyle adjustments. You will find my unique, often quite intuitive yet uncannily accurate, theories and explorations along these lines within the pages of this blog.
That’s such a lot, isn’t it; like a long collection of labels. However, I have NEVER lost my determination to heal and, these days (at time of writing this update, January 2021), I am choosing to dispense with all the labels as I embark on a new healing protocol that I truly believe in – The Gupta Program – which draws together many of the healing approaches I have researched and tried over the years, into one powerful program with an extremely good recovery rates. The Gupta Program recommends replacing all such condition names with the simple description “I have a loop in the brain” (it makes me smile to call myself “loopy”), which is really what all of these conditions are, for all the fact that they result in some extremely real and life-affecting physical symptoms. For some time now, I have been a fervent believer in the human potential for neuroplasticity and The Gupta Program came to my attention as the answer to a prayer I had put out for the means to harness this as a tool for ultimate recovery. No doubt, I will be sharing about my experiences with the program in due course but, for now, I am fully committed to the program and prefer to concentrate on the process.
That’s the potted history. 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 Asperger’s Syndrome 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 Asperger’s 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.
When I’m not writing, I’m a professional artist working in (for many years) oil on canvas and (most recently) a combination of digital methods, drawing on my expertise as a painter. My art can be seen on my website Helen White and on Instagram @helenwhiteartist.
Helen White 2016