Chronic Fatigue Syndrome: My Journey to Wellness
Updated: Feb 16
I wish I could tell you I've always followed a wonderfully healthy diet and lifestyle – but alas I cannot. In fact, my health had to hit rock bottom before it even occurred to me that I should make some changes. That was 9 years ago when my life was hijacked by Chronic Fatigue Syndrome (CFS).
After a long-haul flight to Australia my health spiralled out of control. Within the space of 2 months I went from being a work hard, play hard, social butterfly who was always on the go, positive, happy and capable, someone who relished challenge and new experiences, to someone who could just about place one foot in front of the other, fatigued all the time, no amount of rest made any difference. Sometimes I was unable to get out of bed for a week at a time. Simple everyday tasks, like talking on the phone, completely overwhelmed me.
The relentless onset of symptoms dumbfounded me. I was caught in a downward spiral with each day bringing new symptoms. Most frustratingly, my cognitive function and ability to articulate words were severely impaired. My sense of humour and joy for life were gone. There was a constant fog in my head that would not shift and I was locked in a dark place where everything I tried to do took supreme effort. Mental and emotional exertion were even more debilitating than the physical exhaustion. I could not sleep properly and every joint in my body ached. I had a myriad of random digestive and neurological symptoms and I was freezing cold all the time. I could not tolerate bright lights, loud noises or busy environments. I would look in the mirror and I could not recognise the person I saw. I was 44 years old and I felt like I was 70. I had become a walking zombie and I was really frightened.
CFS, so misunderstood, so under-supported and so stigmatised. In the 1980s it earned the flippant label of 'Yuppie Flu' in the media and sufferers were often treated with scepticism or regarded as malingerers. CFS is a very debilitating and complex illness that affects multiple systems of the body. Sufferers present with a combination of very wide-spread symptoms. Typically, CFS is an illness that at best takes many years to recover from but, at worst, leaves many sufferers home-, bed- or wheelchair-bound. Because the symptom patterns are so individual and widespread and because there are currently no diagnostic laboratory tests, getting a diagnosis can be very challenging and take far too long.
In some cases a diagnosis is never obtained. As can often be the case for those suffering with chronic exhaustive conditions standard blood test results come back mostly normal, as did mine – and so I was told there was nothing wrong with me. Apparently my presenting symptoms: a) no longer existed; b) were not genuine; or c) were too baffling!
And so, as I continued to seek help with the myriad of random symptoms that manifested, I began to feel 'marked' as an attention seeking hypochondriac. As someone who is definitely not an attention seeker, or a hypochondriac, these visits became more and more stressful. I felt I could never adequately convey what I was suffering and, not feeling believed, made me anxious, demoralised and more exhausted than ever. With no help forthcoming other than a prescription for sleeping pills (which only made the fog in my head worse) I just stopped visiting my GP. I realised I was going to have to find my own solutions. The one thing I did know, I was not mad, this was not in my head, this was very real. And so started my very long and bumpy but life changing journey into the unknown.
Two pivotal events happened next:
A friend lent me a book written by a Naturopath and this was to became my first 'aha' moment. It was a life changing read as it made me realise what a stress-ridden, toxic and unhealthy lifestyle I had been leading. The majority of my working life, as a freelance graphic designer, had been in highly stressful, deadline driven, corporate environments: 65hr weeks, 18hr days -– working through the night, 10 days back-to-back were not uncommon. I also partied as hard as I worked. Breakfast and lunch were something I grabbed on the way to the office, evening meals were usually restaurant food and when I did eat at home it was usually a microwave meal. I rarely exercised and had no spirituality in my life.
Whilst on a bus reading said book above, a man interrupted me to ask had I ever read the Optimum Nutrition Bible by Patrick Holford. Of course I had not, but it was promptly ordered and there began my first tentative steps into the world of nutrition – and it blew my mind!
Now I had something to focus on. I transitioned over to an organic, nutrient dense, wholefoods diet. I removed all sugars, processed and refined foods, additives, preservatives, yeast and alcohol. I tested for food sensitivities and removed the foods I was reacting to as well. At a time when I was physically and mentally exhausted re-educating myself and cooking every meal from scratch was time-consuming and challenging but, as tempting as it was to opt for convenience in order to rest and preserve my energy, I never compromised with this. I knew I was on the right track when I noticed my downward spiral was starting to plateau. I couldn't say I was feeling better by any means, but I wasn't getting worse and that was a first step in the right direction. I believe a key element of my healing and in halting the downward trajectory of my health spiral was the fact I embraced, very early on, that my lifestyle was a contributing factor to what was happening to me.
Inspired by natural healing and the body's innate ability to heal itself given the right environment, I fully immersed myself in refining my diet and changing my lifestyle. I experimented with various therapies and protocols – some of them helpful but others, introduced too early, set me backwards. With no cohesive support or care I stumbled around like this for several years.
Slowly my symptoms and quality of life began to improve. But I only felt ok so long as I did nothing to rock the boat like, stay up late, relax my diet, skip my juicing regime, be too active, concentrate too much, drink alcohol or incur any stress. I was in a catch-22 situation – now I had a bit more energy I was desperate to do more and start rebuilding my life. However, misjudge my resilience and the shutters would come crashing down and, with each crash, my new found and hard fought for energy would be gone, my morale would plummet and I would despair if this would ever end.
Stuck now in this pattern of cyclic crashing, I knew I had to do more than just manage my symptoms and this was when I decided to study Naturopathic Nutrition at the College of Naturopathic Medicine. I wanted to understand more about the science of nutrition and how it impacted my body at a biochemical level. I wanted to leave no stone unturned to support my healing.
My next four years of study allowed me to do that. I learned to provide my body with the correct foods, nutrients and protocols to support:
Adrenal function to facilitate a healthy HPA Axis stress response, cortisol production and blood sugar balance.
Thyroid function to improve overall hormonal balance and metabolism.
Optimal digestive function to maximise nutrient absorption and reduce food sensitivities via gut permeability healing protocols.
Immune system defence and repair via protocols to remove bad microbes, yeast and parasites to support a healthy gut microflora and reduce inflammatory responses.
Mitochondrial function to facilitate optimal ATP/energy production.
Nervous System function to calm hypersensitivity and anxiety to promote relaxation, sleep and a healthy circadian rhythm.
Gentle detoxification to facilitate elimination of toxins alongside appropriate liver support. CFS sufferers are typically poor detoxifiers so all modes of detoxification should be chosen carefully and only implemented when they can be tolerated. Through DNA testing I learned I have genetic SNPs that create rapid Phase1 and compromised Phase 2 detoxification pathways – not a great combination and no wonder I suffered savage Herzheimer reactions in my early years of healing and detoxifying – I endured a 4 month period where my symptoms, already very bad, worsened whilst I was cleansing and killing off microbes. Unfortunately, the practitioner I was seeing was not very knowledgeable in supporting CFS or our tendency for severe die-off reactions and consequently, I went through a very difficult period where I suffered unnecessarily. On another occasion just 1 session of reflexology, introduced too early in my healing left me unable to function for a week because of the detox reaction I had.
I used Functional Testing to dig deeper into my health issues. Unlike standard tests which are often focused on identifying disease states, functional testing focuses on identifying the many levels of imbalance that can be occurring years or decades before we actually reach a disease state.
Lifestyle Medicine was also an integral part of my healing and remains a key part of my life. Some areas I supported were:
Stress management: CFS sufferers typically have a dysfunctional response to stress. I schedule into my week: sunshine, fresh air, nature, walking, exercise, yoga and meditation.
Increasing movement: It was 2 years before I partook in any exercise for enjoyment and that was just gentle walking and then restorative yoga. Aerobic exercise often made me crash if I did not judge it carefully.
Vitamin ’N’: I found my spiritual place! I love to be in nature and the benefit I gain from this is like nothing else.
Happiness, light and laughter: The CFS sufferer often has a highly sensitive personality and feels things deeply. I avoided listening to the news for 2 years because it affected me so much. Even today, I avoid watching movies about murder, trauma, war or tragedy. As much as possible, I avoid people and situations that emotionally drain or upset me.
Being kind to yourself: I’ve always had very high expectations of myself and can be quite a task master. I let myself off the hook now, everything in life does not have to be perfection. Still a work in progress this one!
Putting yourself first: I am very sensitive to other people’s energy and to certain environments. I trust my instincts now and remove myself from those situations and do not feel guilty about it.
Emotional healing: Identifying and working through any unresolved grief or trauma.
Stay focused: There were many setbacks to my journey but I kept visualising my goal of renewed health and leading a full and complete life again. Tapping was helpful with this.
Reducing toxic burden: I drink and shower in filtered water and eat organic food. I use natural, non-toxic beauty/hygiene products and household cleaners (it is quite easy to make your own). I worked hard at removing toxic/negative thought patterns – Tapping was beneficial with this.
Toxic Dentistry: Long a topic of contention and a discussion way beyond the scope of this post. However I do feel compelled to tell my experience as amalgam removal was a critical part of my healing and also my biggest fear I had to face. Throughout the years whilst I was researching my symptoms and throughout my study years I continually came across the link to negative health outcomes and amalgam fillings. With 9 amalgam fillings I knew this was something I had to address. However, the trauma of the work involved, time and cost filled me with absolute dread. As I researched personal accounts, among the many success stories I also read accounts of those whose health had worsened after amalgam removal. I was terrified of upsetting the status quo I had thus far achieved with my health. But by now I was year 4 into my recovery and although I had significantly rebuilt my health, I was still crashing if I pushed myself. No matter how much I supported myself it felt like there was something always blocking my progress. But after 18 months of research and interviewing several holistic dentists to find the one I felt employed the most safety precautions in their removal protocol, I finally went ahead. My removal was done in 4 phases over several weeks – it was not pleasant. But I will never forget the day after the final removal. I woke up feeling great, I took my bike for a cycle and I cycled all day long. Reaching home, carrying my bike up a steep staircase was no problem. Not even tired, not needing to crash on the sofa, I started to cook my dinner and caught myself whistling as I did so. Eating my dinner and recounting my day I could not believe what I had managed to do: cycle all day, not tired, energy to not only cook dinner but to whistle while I did! There was no pay-back the next day and I’ve never had another crash since. I am by no means saying all my health problems disappeared after amalgam removal, they did not, in fact I developed Fibromyalgia symptoms shortly after this. But I now had stamina and tolerance to things that just weeks earlier might have sent me crashing. I had faced my fears and, in doing so, had removed the stressor that had been blocking my progress. NB: Amalgam removal should only be undertaken by an experienced holistic dentist who employs multiple safety measures. Safe amalgam removal is beyond the scope of the average dentist and even some ‘holistic’ dentists. I consulted 5 holistic dentists and they all had very different safety protocols and some were very lacking.
Now I'm happy to say I'm not just surviving, I'm actually thriving. As each year passes I feel my health continue to improve and it has been 4 years since my last crash. I have stamina, tolerance and resilience now. I can happily go on a 22km hike and my world no longer falls apart if I have a late night, eat sugar, or life gets demanding.
It's great to be able to have a little more balance in my life and now I follow an 80/20 rule with diet. So, when I am socialising or travelling I can relax things and, most importantly, not be stressed about it. But whilst those long years of following a stringent dietary regime or risk collapse are gone, I will never go back to those careless days of assuming I can eat or drink anything I want without repercussions. In my home life I follow a strict organic, whole-food, gluten-free, refined sugar free diet. My diet is rich in nutrient dense foods, healthy natural fats, slow releasing complex carbohydrates and fibre. I do eat meat but I am a believer in quality over quantity. I do not eat intensively farmed meat and opt for wild or 100% grass-fed farmed meat and pastured-raised eggs only. I consume vast quantities of vegetables and religiously drink cold-pressed vegetables juices as a way to bolster my vegetable, phytonutrient and antioxidant intake.
Looking at my journey in retrospect, I could easily feel anger and frustration as I remember that time of not being heard, frightened for my future, no support, answers or cohesive help, no diagnosis to help me explain to work colleagues, friends or family as to why I was no longer coping and disappearing from their lives. But even though I lost so many years to CFS it is not something I can regret. Ultimately, it has been totally life changing in the best possible way, it made me realise good health is the most important thing in life, it made me take control of my own health and it led me to an exciting new career – one I passionately believe in.
I don't think we hear enough positive outcome accounts when it comes to CFS so I am very glad to be able to share mine. My positive energy goes out to every person who suffers with this disabling condition and whilst I appreciate CFS is highly individual, and severity varies, I hope 'My Story' may encourage others who are struggling to never give up supporting their health - positive outcomes are possible.
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