MY JOURNEY WITH CHRONIC FATIGUE

From as far back as I can remember I have struggled with anxiety. I often felt lost, being unclear about who I was and finding my place in the world. These feelings and thoughts intensified as I got older. As a result, my anxiety, depression and dissociation grew throughout my teens.

At university, I studied Events Management, working with my strengths in communication, organisation, and generally being a very practical person. I also had a huge love of music. Going to concerts and festivals was what I loved doing, and I wanted to be a part of that world.

At first, I loved the adrenaline that came with running large-scale events. I was an Events Manager running concerts for up to 10,500 people. Knowing that I was part of a team helping people see their favourite bands, enjoy life and make memories felt truly amazing.

But the events industry is notorious for not only being fast-paced and physically demanding but also having zero work-life balance. It wasn’t uncommon for me to work 18 hour shifts back-to-back. My mind and body were continuously dealing with high levels of stress and sleep deprivation.. Being on the go so much, I didn’t eat well either - I relied mostly on coffee and sugar to get me through intense working days!

In 2017, I had my first big CFS/ME crash, although I didn't know what it was at the time. I was dealing with extreme tiredness, high levels of stress, anxiety, headaches, back pain, to name just a few.

From 2017 to 2021, still undiagnosed, I experiencing twice-yearly crashes that would last around six weeks, where I was bed bound. The doctors would say I was just someone who got a bad virus, time and time again.

Once I’d recovered, I kept going. I powered through with my intense work life, ignoring all the signs my body was sending me. That was until the beginning of 2021, when I didn’t recover after a crash. Rather than my usual six weeks of recovery, I spent three months stuck in bed, having countless tests and examinations, all coming back ‘normal’ when doctors finally diagnosed me with CFS/ME.

At the start of 2021, I was looking to understand more about Chronic Fatigue, only to have doctors tell me I would have to deal with being this way for the rest of my life. As you can imagine (or maybe you’ve experienced this yourself), this diagnosis was devastating. I had barely any emotional support to help me deal with this shattering news. As a result, I spiralled into a very deep depression, cutting myself off from the world and social media - it all felt too much to deal with.

After 9 months of isolation, I was desperate to connect with some other people with Chronic Fatigue. I wanted to find others who knew how I felt. I went back on social media and started to connect with people. Through forums and hashtags on Instagram, I found people talking about full recovery from CFS/ME using Mind-Body tools and I discovered CFS school in December 2021. I looked at lots of different courses around brain retraining, carefully reviewing the options. In the end, I felt like CFS School had more to offer, with polyvagal theory, nervous system regulation and trauma work - all things I read about and felt connected with.

I took the leap and signed up to their second-ever LIVE course at the beginning of 2022. When doing the course, everything they were saying was clicking with me. It all started to make sense; why I was so ill, why all my symptoms were stopping me from living my life. I wasn't listening to all these alarms that my body was sending me that I needed to change the way I was living.

My limiting beliefs that had been created from when I was just a child were creating a story in my mind. Stories like:

“I am not good enough”

“I can’t succeed in life”

“I’m not loveable”

These thoughts - which were constantly going on in the background of my mind - were making my body feel extremely unsafe and dysregulated. As a result, these fear-based thinking patterns led my body to be in a constant state of fight or flight. Rather than coming down from that state and back into rest and digest, I would fall straight into a freeze state. When I look back now, I can see how this was a pattern playing out for years and years. Through repetition, my body eventually became programmed to follow this pattern: of oscillating between riding high on stress and then crashing out into freeze. This became my body’s default mode. Eventually, I got stuck in this dysregulated state, producing a wide range of symptoms, which is why it was so hard to tell what was wrong with me at first.

As I started to do the work from CFS school, working on the brain retraining and soothing the nervous system, I started to see improvements. I started being able to go on walks! This win was huge for me at first. I felt so overjoyed to be able to leave the house. Gradually, I started walking further and further, gently increasing the distance each week, carefully listening to what my body was able to manage. I started having more confidence in my body to do more things. I started connecting to my body and listening to what she had to say. I was connecting with my inner child and re-parenting her.

During the life-changing 12 weeks with CFS School, I saw huge improvements and I was delighted with the results. But I was also acutely aware of just how much more healing was needed. I had spent decades in flight and flight. It was going to take more than just 12 weeks to bring my nervous system back into balance. But I knew I was on the right path to heal. I had the tools, connections and support to keep empowering myself to heal. I’ve continued with all the work ever since. My health has improved more and more over time, although it hasn't been a linear healing journey. It's been rocky at times, for sure! It's taken ups and downs along the way, but I have kept with it and persisted with the tools that CFS school gave me.

I am now fully healed from chronic fatigue.

I have my life back. I can walk as far as I want without having to worry about post exertional malaise! This summer, I have even managed to go to my first standing concert in 3 years! I cried with happiness, having thought I’d never be able to do that again.

I trained as a breathwork coach over 8-months and I have been working with CFS School since July 2022 as an assistant to help other people heal, just like I have.

I run my own business now too, working full time. Being my own boss, I decide when I want to rest. I no longer sacrifice my wellbeing for my work. I listen carefully to my body - having learnt my lessons! - and constantly fine tuning my activities to create balance. I am honoured to support other people experiencing Chronic Fatigue with their recovery.

My role at CFS School

I support other students doing the program, guiding them through the practices. Having been through the programme myself, I totally understand the feelings of resistance, overwhelm and disappointment when our recovery is not going the way we want it to. I help people when they are feeling stuck on the journey and can't move past a certain point. I guide them to go deeper, to move through things they may have missed and be that support they need when struggling. I get it because I have been through exactly what they have been through. I am not better than them - just further along the path. I light the way, helping them feel seen and heard.