Chronic health journey recap: hardships, connections and gifts

I’m in the process of refreshing my health bio in the About section on this blog and I want to share it here, partly because, as a fixed “page” on my website, I am unable to tag its content and I really want people to find this account and take whatever may help or encourage them from it. I’m feeling in a good place and it feels like the right time to take stock, draw a line and make sure what I have put out there so far is accessible in case it is useful to anyone passing by.

So, I’m going to share some of the gifts of my journey first, taken from highly positive conclusion of my bio, right here in the next section and then (for those who want the full story of my health progression, or any of my longstanding regulars who are open to a much-more coherent refresher of where I have been than ever before, with dots joined and all that) I will copy the rest of my refreshed bio right below that.

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). 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.

Here is the full summary of my health journey from my revised bio:

I first became severely unwell with chronic fatigue syndrome and fibromyalgia back in 2005 when I was in my 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 on 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 go for acupuncture session in my lunchbreak, since I had such adverse reactions to pain medications. 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 RTA over a decade earlier and had been cautioned about doing office work, though I felt I had no choice. 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 I had to stop everything. Doctors were as bewildered as I was and, back then, very little was known or shared about fibromyalgia, chronic fatigue and other chronic illnesses (yes, they defaulted to assuming it was all anxiety or depression!) so I was left to research my way through very limited information 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 new and 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.

Things ebbed and flowed after I gave up work and began various alternative therapies but were set back by two (unrelated) emergency operations, in 2008, which threw my health back into disarray. I noticed, 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 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). The penny then dropped (at the age of 51!) that I also have underlying hypermobility type Ehlers Danlos Syndrome (EDS), ADHD and that I am autistic, all discussed at length in this blog. I strongly feel that these go a long way 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. 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 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 processsing 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, movement and tirelessly working on staying present) and 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). 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 fitwho 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.

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.