My CFS story

When I was diagnosed with CFS/ME 2.5 years ago, the doctor after repeatedly trying to medicate me with antidepressants when I was not depressed uttered I think the most famous words in CFS world probably are “95% of people do not recover so don’t get your hopes up”. I responded reflexively and immediately with “well fuck you, I am one of the 5% and I will recover”. I promptly followed this up by walking out leaving my slightly stunned husband to follow. Key for me was right from the get go, I knew deep down in my soul, that there was no question that I could and I would completely recover. This absolute belief and commitment my healing was key. Related to this was the notion that I was never ‘sick with CFS’, I was always ‘in recovery’. I believe this mindset and the fact that I never took CFS on as part of my identity and who I was, was incredibly powerful and served me very well indeed. 

Everyone has their own experiences in and around diagnosis and the journey that is CFS/ME, my greatest desire is that in writing about my own experience and total recovery, I offer some hope and some light that supports you in your recovery. If I can recover to become a better version of myself – calmer, stronger, more resilient, more grounded, more aware, more capable, more self-loving, more energetic, more connected, more loving and more of everything good and wholesome, then so can you! I mean heck – on March 11^th I decided to run an off-road marathon (1000m vertical and 42.2km) and on March 15^th, four days later, I did! And I loved it – I felt amazing and I felt great the next day, the day after that and the day after that…. you get the picture. I still feel great and when I take myself back to crossing that finish line, I am filled with joy and satisfaction. I thought I would cry at the finish line because of how symbolic it was – the end of an era. My wonderful friend at the finish said to me “why aren’t you crying?” and I responded “because it wasn’t hard enough”. It wasn’t, I could have gone another 10, 20, maybe even 30km… who knows? My capacity knows no bounds, I have set myself free from so many limitations and you can to. My body is bloody amazing!

Back to the doctor, after that experience as a personal choice, I never went back: my intuition told me that conventional medicine had nothing to offer me. Some of you may have enlightened and knowledgeable doctors which is fantastic, I did not. Along my journey I made a lot of choices about what I would and wouldn’t try to assist in my recovery, all were guided by what felt right for me at the time. Fundamental to this was the knowledge that I knew myself best, yip me. I am responsible for myself and answerable to myself. I take responsibility for my health and wellbeing and my healing and I trust myself to make the best decisions for me. Something may not have been right in one moment, but was 2 months later. I decided to trust myself and trust by amazing body to know and acted on what felt right for me and what worked. After all, even though I had initially felt ‘let down’ by my body and if it wasn’t trustworthy, I soon realized that I had let my body down – I had pushed it relentlessly, I had nourished it poorly on many levels and worst of all I had consciously chosen to ignore it (yip – I had decided that I was going to ignore being tired in the weekends and do what my mind /e go wanted to do which at the time was train for an adventure race). My body is amazing and so is yours! I soon realized my body was incredibly intelligent and I needed to get out of its way so what we could heal. I mean your body heals wounds like a cut on your finger without your valued input, it processes food taking out goodies and excreting the rest, it could most certainly heal CFS with your love and support as mine did. 

Right from the get go I was determined to heal and be cured completely. To heal and to be cured are not the same things. To be cured means your body recovers whereas to be healed meant I needed to effect change to all the things – patterns, behaviors and beliefs that landed me in CFS land in the first place inside out. I wanted to be healed because I never wanted to go back to this place. I wanted more for myself and I wanted the learning that was on offer from this experience so that I could become a better, more complete, fuller me. For example, the belief that ‘I am not good enough’ so I must prove myself all the time, constantly achieve things, not accept myself as I am and always try to be more, do more. This belief drove me to push myself harder and harder in all aspects of my life and to being incredibly self-critical and harsh, unloving and downright mean to myself – some people refer to this as the ‘monkey on their shoulder’, well trust me, I think I had a whole troop of wild, crazy, neurotic, self-sabotaging little rascals on mine!

Another deep-seated belief going back to childhood (as all juicy things seem to) was that ‘I am not safe’ or ‘it is not safe to be me’. This belief kept me disconnected from myself and others, enhanced my feelings of isolation and compounded my perceptions of not belonging anywhere and having no ‘tribe’, no people. Quite an irony that I ended up experiencing CFS which for me was an incredibly isolating, lonely condition which very few people understand including those who have it. For 2.5 years I was kept very good company by my husband, my 4 chickens and my dog and my gratitude for all of them knows no bounds – they were all and are all…. well words are totally inept to describe the depth of gratitude, love and feeling for these beings. Just WOW. 

I operated under the philosophy that if I literally ‘changed my mind, I could and would change my reality’. This was supported by a lot of soul searching, chatting, loving, accepting and reassuring my inner child and most importantly developing my awareness and taking care of myself and my inner children right now! Living in the present and the now, was one of the great gifts of CFS for me. When you have CFS, there doesn’t seem to be much choice around being fully present (although of course everything is a choice) because you have no idea what the future hold, you may or may not have the energy to do the dishes in five minutes, the past is gone, so all you really truly have is this present moment. So what are you going to do with that? What choices are you doing to make? 

CFS/ME is an insidious thing… for me it began with very real and very physical symptoms. For me (from what I can remember) it was a year long headache and ‘twitchy eye’, a totally messed up sleep cycle, never feeling refreshed, achy/restless legs, brain fog (holey moley brain fog to rival Beijing), heart palpitations, anxiety feelings, a relentless sore throat, feeling sick in the stomach, diminished ability to concentrate or reason and of course complete and utter exhaustion especially after certain types of exercise. It took me a long me to realize how completely unwell I was, my husband would say, I actually never really did and I agree. 

So what happened from here was I constantly scanned my body for tell-tale signs (symptoms) that I had overdone it… I mean I must have been scanning my body literally thousands of times a day. Because I was doing so much scanning, I began to ‘hard wire’ the illness into my neural pathways which serves to make this your new ‘normal’. From here, I became over-sensitized and attached to the ‘thought symptoms’ that results from the physical scanning “oh my throat is sore”, I did too much; “oh my body aches”, I am going downhill AGAIN… blah blah blah… you get it. I was not helping myself. This stuff really loops around in your brain, around and round until it becomes firmly entrenched. This is the part I got tempted to identify with CFS and make it part of who they I was. Thank goodness, I caught myself in this lie. From here, the scanning and the meaning you give it loops around and around feeding back to you that you are not safe, causing your nervous system to dysregulate further, leading to multisystem imbalances (endocrine system & digestive system as examples). I believe this is where the, let’s call the, secondary symptoms arise – the sensitivities such as food intolerances, chemical sensitivities, light sensitivity, the inability to be around more than one (or even one) person and so on. This cycles around and around unless you stop it which you absolutely have the power to do. You see, really all that has happened is, you have created a really bad habit, some mal-adaptive circuits in the brain which absolutely can be changed. That is the beauty of our brain – we are constantly learning and it is changing and adapting as we do. In CFS, we initially teach our brain that we are not safe and we need to activate our sympathetic nervous system to deal with life threatening stimulus (which actually our brains have misinterpreted because really it was just a tabby cat walking by, or some constructive feedback at work, or a bad cup of tea) and now, we need to teach it and it needs to learn through constant love, repetitions and support, that we are safe, everything is OK and our bodies are amazing. And so this is what I did. 

My primary focus was on calming my body by activating my parasympathetic nervous system (PSNS) which deals with resting and digesting (also sex). If you think of the sympathetic nervous system (SNS) as the accelerator in a car, the PSNS is the breaks. The most effective tool to do this for me was through the breath. Breathing slowly, intentionally, with longer exhales, humming as I breathed out, ‘ahhhhhhhhinnnng’ as I breathed out while focusing on making the out-breath longer which serves to activate the PSNS and bring the nervous system back into balance. I also used laughter and laughter yoga which is the body’s natural anti-dote to stress. Once in a calm and joyful state, re-wiring the brain is a lot easier. Once this state, (I also used mediation) I got busy imagining and creating the future I wanted – energetic, joyful, fun, filled with meaning. I viscerally imagined myself climbing mountains, going to work, cooking dinner anything and everything that I wasn’t currently able to do. I imagined myself sitting in a café, surrounded by noise and smells and breathing it all in while feeling happy, joyful and content. I did this every day, many times a day – it became a really great habit and now all of those things I imagined are my current (well before lockdown) reality and more. Also in this state, I was able to more easily notice patterns, beliefs, attitudes that had been driving my behavior in ways that did not support me. This awareness in turn, gave very clear guidance to me as to what my ‘next healing steps’ were. Sometimes it was a little overwhelming but I was reminded to ‘do my best and forget the rest’ because newsflash – my best is good enough!!! 

Every single treatment I sought, every single thing that I did, brought me closer and closer to being complete healing. There was no one magic bullet but a series of things that helped me in that moment, at that time. This is the beauty of CFS – it really brings you fully into the moment. It is a bit of a dance for sure – taking care of and accepting how you are in the now while still holding hope and belief for a better healthy future. The power is in choosing how you respond to the now…. I mean, the reality is that nothing else really exists but now. So I had my moments of now – responding gently and lovingly to my needs, listening to my bodies wisdom and I was busy creating a wonderful future or myself. Eventually they coincided…. and here I am literally living my dreams or my creative imaginings. I no longer have CFS brain wiring, I no longer scan, I no longer have any of the limitations of the condition.   

This is simply my experience combined with my research of CFS and some ideas about what I know helped my heal fully. You will have your own idea’s – I encourage you to trust your knowing and to choose to believe with all your being, that you too will 100% heal. 

You are good enough!

Your body is amazing.

You’ve got this!

You know yourself best. 

You are powerful beyond your capacity to imagine or conceive how powerful you actually are. 

I send this with compassion for you and for what you are experiencing. Trust me, it is temporary, you will get though it and come out of it totally freaking amazing. Change is certain.

This blog is not medical advice and should not be considered so.

Before making any changes, always consult your primary physician first and do what feels right for you.