Life before my Chronic Fatigue Story

I had a very normal, active childhood in the UK. School, hobbies (mostly dancing!) and all the usual things you would expect growing up. Yes, a few ups and downs, but nothing out of the ordinary.

I went to Cambridge University, where I studied history. At the end of my undergraduate degree, I still wasn’t sure what career path I wished to take. So, I ended up staying in Cambridge and studying for a Masters and then a Doctoral degree (PhD). By the time I had completed that, I had decided that I did not wish to remain in academia permanently. So, I took a job as a Strategy Consultant in London.

(For anyone who hasn’t heard of this before, it is basically a consultant who goes in to businesses of all shapes and sizes and helps them develop a strategy for overcoming business problems. So, that could be things like a marketing strategy for a product, or deciding on the best price to charge for a product or service. Perhaps writing a business plan. Or perhaps working for a Venture Capitalist to help them decide whether or not to make an investment. Basically, it was interesting and varied).

Now, a job like this, it turns out, is pretty high stress. So, for two years, I found myself working crazy hours. (Really crazy hours… Like all night, about once a month… 40 hours at a single stretch, without any breaks, on one occasion.) And, of course, those hours and that stress also have an impact on sleep, social life, on healthy eating, and in many other areas. That kind of lifestyle is going to have consequences at some point. To cut a long story short…at the age of 26, I just collapsed on my way into work one morning.

What were my symptoms?

I will digress briefly here to talk about symptoms. Everyone experiences a slightly different set of symptoms. The one common factor is extreme fatigue. We’re not talking about the kind of tiredness that any of us feels at the end of the day, or after a large amount of physical exercise. No, the fatigue you experience with Chronic Fatigue Syndrome is utterly overwhelming, and impossible to ignore or ‘work around’.

In addition to that, most people also feel ill. So, for me, that was having a very sore throat…for years, not just days, weeks or months. Also feeling as if I had the ‘flu. Then headaches, severe nausea, brain fog (that’s the inability to focus, think clearly or remember things), swollen lymph nodes… Again, these remained swollen for years.

To be clear, not every single symptom is present to the same degree all the time. For example, after about five years, I did reach a point where sometimes my sore throat would disappear altogether for a few weeks, even months. The nausea would come and go. Eventually I only experienced it when I had completely exceeded my energy limits and was trying to run on empty. So, that symptom often preceded another crash.

When I eventually started getting proper help in 2016-17, of course, it became clear how these different symptoms tied into the various systems in my body that were struggling. But, taken as a whole, they appeared to be a mystery. The medical profession was looking for a single cause for this wide range of issues. Of course, that is not the case. But that is something we will explore across the Find My Energy website. So, let me get back to my chronic fatigue story.

What is the cure for CFS?

There isn’t one! The only treatments I was offered were anti-depressants because “they make some people feel better, but we don’t know why”. I did not consider that a sufficiently good reason to take a highly potent chemical drug!

I was also offered Cognitive Behavioural Therapy (CBT) again because, “some people find it helpful.” So, I agreed to pursue that avenue. My doctor sent me for an assessment which basically discovered that I was not suicidal. Having determined that result, the assessor added me to a year-long waiting list. By the time the year had passed, the CBT department at my local hospital had closed and I was looking at a two-hour round trip if I wanted a session. Given my energy levels, that was impossible.

I was also referred to a Rheumatologist. (Again, for anyone who doesn’t know, this is a specialist in diagnosing and managing chronic inflammatory diseases like arthritis). He was a lovely, kind man, and I’m sure he knew an awful lot about arthritis. However, on our first meeting, his opening words were, “You probably know more about CFS than I do.” That’s not really what you want – or expect – to hear from the specialist assigned to treat your illness. So, by 2003, I was on my own (medically speaking – I had wonderful support from family and friends). I was told that 80% of people with CFS never recover. I decided that, no matter what it took, I was going to be one of those in the 20% who did recover.

How did my illness evolve?

Before I get on to talking about how I discovered treatments that helped me, let me give you a general overview of the shape of my illness over the twenty years.

Every individual’s experience of CFS is different. My story is one of improvement and relapse. So, as I said, in the beginning, I was bedbound. After a few months, I managed to improve to a level of ‘mostly housebound’. So, in other words, my body was permanently fatigued, but did just about have enough energy to get out of bed and potter around the house.

Between 2004 and 2012, I very, very gradually increased my energy levels. First to going out on a small outing, and gradually building up to a little more. I was on sick leave from work for five years. In my sixth year, I began a ‘gradual return to work’ program.

This basically involved me travelling into the office and spending two hours there on one day a week. The idea was to gradually increase the number of hours, then increase the number of days per week, and eventually end up back at full-time employment. However, the reality proved a little different. I spent five years in a ‘boom and bust’ cycle. So, I would manage a few weeks of two hours on one day, a couple of gentle increases in my hours worked, and then my energy would crash again and I would be off work for a few weeks, even months, before starting the cycle again. I never got to more than three hours per day on two days of the week.

A possible turning point in my Chronic Fatigue Story?

In 2012, it became clear that I was never going to return to work as a strategy consultant. So, my company let me go and I started up my own business. (During my illness, I had returned to an old hobby…craft! Or specifically, a new craft…beading. So, I had begun creating jewellery, wedding bouquets and ornaments from beads. My work had attracted some notice, and I thought maybe I could earn some kind of income that way).

So, between 2012 and 2016, my health improved further. I was able to pace myself much better being my own boss! I thought I had found a level that was imperfect, but acceptable.

In other words, I was able to work enough to pay my bills and socialise a bit. But I still had to manage my life incredibly carefully (through special diet and pacing), and I was ‘just getting by’, rather than fully energised. Still, if this was as far as I could get, I would take that. But then…disaster!

Collapse Number Two

In 2016, I collapsed again. Right back to square one, bedbound. All the treatments and strategies that had helped me get as far as I did, suddenly didn’t seem to be working. Once again, the rug had been pulled out from under me.

By 2016, there had been quite a few developments in the understanding of CFS. So, this time around, I found myself a specialist who actually knew more about the disease than I did! He gave me a blood test that showed my Mitochondria (the little batteries that power our cells) were in pretty dire straits…no wonder I had no energy!

Thus began my journey of learning about how the body produces and uses energy, and working with various different specialists. (These were in the arena of functional and then energetic medicine, rather than ‘traditional’ allopathic medicine).

Through this journey, I discovered that not only did my Mitochondria have problems, I also had issues in my endocrine system (hormone regulation – specifically with thyroid and adrenal glands), immune system and central nervous system.

So, far from being a psychiatric disorder, my body was experiencing very real physical issues. They just didn’t get picked up by the original blood tests in 2002-3.

Through this journey, I learned profound information about my body and how to heal it. The process has been long, hard, and quite a rollercoaster, but I have come to understand what went wrong, and how to fix it.

So, now, in 2022, I am feeling stronger, and more energised than I have ever felt in my life…and as I write these words, I still have a little more healing to go. So, I can’t wait to see how Katie 2.0 shapes up!

Diet and Nutrition

The first big breakthrough in my chronic fatigue story came in about 2004. This took me from housebound to starting to go out a little. I was fortunate that I was introduced to a nutritionist. Although she didn’t specialise in CFS, she did have some knowledge, and knew that some people were getting great results through simply cleaning up their diet.

So, she identified some food intolerances in me. As soon as I cut those foods out of my diet, my energy increased noticeably. For me, this was within about a two-week period.

From that relatively early stage, I knew that diet was an important factor in healing. So, I continued to research more, learn more and adapt my diet to suit my body and optimise my energy. In 2017, I also began working with the nutrition department at the Optimum Health Clinic. They were able to take this area to the ‘next level’ by testing and working out specific supplements that my body needed to help it heal. For example, treating vitamin D deficiency to help support my depleted immune system.

Stress and Trauma

I think it was around 2005 that my doctor (my GP, not the Rheumatologist), told me he had another patient who had been making miraculous progress via a treatment called Mickel Therapy. Sure enough, when I looked it up, it was something that had been developed by a Scottish doctor, specifically to treat CFS.

It was a form of talking therapy, and it was the first time anyone had explained to me the role of the central nervous system in keeping the body healthy.

So, although this treatment didn’t provide me with the same miraculous results, it did provide me with a new knowledge and way of looking at the illness. This allowed me to pace myself better and become more aware of how my body used energy.

I also acknowledge that I was incredibly resistant to any form of psycho-therapy. It seemed to me to be ‘buying into’ the narrative that CFS is “all in the head” and that patients are just lazy, hypochondriacs, or perhaps even slightly insane.

However, many years later, I found myself delving deeper into concepts of stress and trauma that have a very clear physical impact on the body. So, I learned that this idea that our minds are separate from our bodies, is something of a false perception. Again, working with the Optimum Health Clinic, in 2019, I learned some techniques, like the STOP technique and EFT (Emotional Freedom Technique – also known as Tapping). Both these techniques are designed to help heal the central nervous system and re-regulate the body out of ‘fight or flight’ mode and back into ‘healing’ mode. That support proved to be crucial to allowing more layers of healing within me.

Pacing and Lifestyle

From fairly early in the illness, I began to learn about the idea of ‘pacing’. This is the idea that every person has a finite supply of energy. For me, CFS had reduced that to a critical level. But, for any of us, if we try to live a lifestyle that uses more energy than our body can produce, the results are not going to be good.

So, ‘pacing’ is about understanding what, of your activities, use most energy, and regulating your day to accommodate your energy levels. Taking this a few steps further, there are a whole lot of ‘lifestyle hacks’ (I’ve already mentioned diet), that can boost your energy supply. So, this became another area in which I found myself able to make changes and see improvement. Again, this has been a process of learning and evolution over many years, and much of the science around this area simply didn’t exist when I first became ill.

Energy Medicine

This is the area to which I came last – only in 2020, actually – but which has been the final (and most powerful) step in my recovery.

Energy medicine is both the oldest treatment known to mankind, and the newest. I say ‘oldest’ because Traditional Chinese Medicine, Ayurvedic medicine, Shamanic medicine, and basically all native cultures have used this forever. Yet, because Western science cannot ‘see’ it or ‘prove’ it in a laboratory setting, it is frequently dismissed as “mumbo-jumbo”, or witchcraft, or simply the placebo effect.

It just so happens that the latest scientific research – particularly in the field of quantum physics – is beginning to ‘prove’ that this energy medicine may actually be ‘real’ after all.

Energy medicine encompasses a huge range of different treatments, including things like Sound Therapy, Colour Therapy, EMDR, EFT, Reiki, Bio-Energetics, and so much more. It works on the energy system that manages the body’s systems and organs. So, it is working more in the realm of physics, than chemistry or biology.

Again, this is a huge area, and one that I will explore in a lot more depth in other parts of this website. I will also explain in those areas why I think this was such a huge turning point for me. So, let me end my chronic fatigue story here.

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