I was diagnosed with Chronic Fatigue Syndrome in 2010 after I had been virtually housebound for nearly a year. At the time of diagnosis, and to this day, I felt like it was an unnecessary and useless label. The diagnosis didn’t come with any kind of treatment plan, medication or even advice. It simply came with a “we don’t know much about it, but you’ll probably have this for life”. I was sent on my way believing that that was my lot. Thanks Doctor.
Chronic Fatigue Syndrome does more then it says on the tin – and that’s why many CFS suffers are fed up with this vague and dismissible name. CFS/ME is a complex chronic illness that manifests differently among it’s victims and involves not only debilitating fatigue, but also chronic pain, irritable bowel syndrome (IBS), brain fog, weight loss, fibromyalgia, headaches, nausea, insomnia, muscle weakness and more.
The causes of Chronic Fatigue Syndrome are still debated, despite it being reported for more than 200 years. It’s likely that there are several triggers, and that a unique mix of factors trigger each individual’s illness.
In addition to viruses as the cause e.g. Epstein Barr, a recent review proposes a disruption of gut microbiota as a possible cause (Navaneetharaja et al. 2016). Our gut microbiome is so important for our long-term health this proposal doesn’t surprise me at all, and it fits with my experience. Because our gut microbes are so important, whether they are disrupted by a pathogenic virus, poor diet, stress or something else, the knock-on effects can be far reaching. CFS has also been proposed as an autoimmune disease triggered by gut dysbiosis and disruption of the lining of the gastrointestinal tract (Navaneetharaja et al. 2016).
It’s easy to think that the virus that I caught in Costa Rica in 2009 was the culprit, as many studies show connections between CFS and various viruses, but in reality the virus I caught was the straw that broke the camel’s back. My CFS had been simmering away for a long time – I believe since my mid teens.
For me, I believe my immune system has been operating sub-optimally for a long time. I believe that my CFS is a result of gut dysbiosis and autoimmunity. I know that when I look after my gut and acknowledge my diagnosed autoimmune disease (Hashimoto’s thyroiditis) my symptoms improve. It’s common to collect autoimmune diseases if you don’t catch them early and work at reducing inflammation.
For years I’d had periods of inexplicable exhaustion. As a child I’d happily curl up anywhere and go to sleep. In the summer holidays I remember systematically sleeping in until 11:30am and being shocked by how tired I was, but I simply couldn’t wake up earlier. I’ve never been sporty or energetic and I know I should be in bed at 9pm. I have been constantly cajoled, pestered and teased into doing things – going for walks, staying up late, going to the pub – when my body is crying out for sleep. At university, during my undergraduate, I had one day of SCUBA diving each week in the winter. I’d suffer severe headaches afterwards and I’d be exhausted the next day, barely able to walk to my lectures. In my early 20s I’d wonder if I’d be able to walk to and from town – just a 20 minute walk – but I was unsure of my strength. I remember catching a cold and being in bed for days, and then unable to walk faster than an 80yr old with a Zimmer frame. It was ridiculous and I remember marvelling at my lack of strength. Each of these episodes passed and, once they had, I continued on with normal life – after all, all the doctors I saw told me I was normal.
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The final straw
I got seriously ill in 2009, at the end of my PhD. I’d had several quite stressful years during my PhD, but I’d loved my work and was passionate about producing high quality science. I’d worked hard in a very toxic system with no support. I had my ideas and data stolen, suffered abuse of power, manipulation and sexual harassment – things that are rife in academia. No-one had my back. I didn’t have an academic champion or mentor until it was far too late. This stress during my PhD was definitely a huge contributor to my poor health – and a big factor in distancing myself from academia. But it wasn’t the sole cause of my CFS. Many people unhelpfully told me I’d made myself ill by working too hard. While several studies link perfectionism and CFS (as reviewed by Kempke et al. 2015) this isn’t the full story.
What it CFS feels like
The fatigue is like no other. A total exhaustion that stops you from being able to lift your head off of the pillow, from moving your legs to get out of bed, from standing while the kettle boils or from being able to speak. It prevents you from functioning and makes you pause and question the necessity of every action. The brain fog that goes along with it is nothing short of terrifying. I could no longer rely on my brain. I couldn’t recall dates, times, facts or even names of close friends. I couldn’t problem solve. I couldn’t hold a conversation because I couldn’t follow it or remember what had been said or what I had already asked. It was humiliating and scary. I had terrible IBS and, despite eating three or more main meals in a day, I kept loosing weight. I ate and napped. That was it.
I went from being a competent, independent and reasonably intelligent woman to someone who couldn’t communicate with her friends, didn’t have the energy to read and couldn’t walk to the end of the road. I was by myself all day while my husband was at work. I was lonely and down. I needed to be cared for. I needed someone to shop, cook and clean for me, and my husband became my carer.
Slowly I made myself better by focussing on me and allowing myself to put my health first. I took advice, I listened to my body and I learned to let go of anger. I changed my diet, even though my diet was healthy, and my approach to life. I radically reduced carbohydrates and I cut out gluten. I prioritised my sleep and I stopped using chemicals in my home and on my body.
It took time, but I returned to “normal” – at least I was no longer chronically fatigued and ill. I was different though, but in a good way.
I have to keep on top of it, especially since I also have Hashimoto’s thyroiditis, which shares many of the same symptoms as CFS. When I let my diet slip or if I pack too much in (which is a constant tendency), I know I’ll pay the price. It’s all about balance.
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Do you suffer from CFS or another debilitating illness? I’d love to hear your story.
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All the best,