I am so grateful to share Anaya’s recovery story from her 2.5 year journey with CFS/ME. She became mostly housebound after trying to push through a combination of environmental stressors. Anaya shares how she ultimately reclaimed her full health.
She hails from New Zealand and has helpful tips and inspiring insights. Below is the audio recording of my candid interview with her.
Introduction: Anaya’s life before, triggers, onset, and initial medical ‘answers’
Part 1: How Anaya kept her morale up, activated her parasympathetic nervous system, and more
Part 2: Diet insights and inspiring words of wisdom
Anaya also separately submitted written answers to my interview questions.
Liz: Thank you so much for sharing your powerful full recovery story from CFS/ME. What is your purpose for sharing your story?
Anaya: Everyone has their own experience with the diagnosis and the journey that is CFS/ME. My greatest desire is that in writing about my own experience—and my total recovery—I can offer some hope and insight that will encourage you and support you in your journey.
If I can recover to become a better version of myself—calmer, stronger, more resilient, more grounded, more aware, more capable, more loving and more self-loving, more energetic, more connected, and more of everything good and wholesome—then so can you.
Liz: What was your life like before? Did you have a sudden or gradual onset?
Anaya: I was training from an adventure race while working as a teacher when my health unravelled 3 years ago. I had always been a Type-A person who failed to leave work at work.
When I caught a nasty little person bug and developed a fever, and my sleep quality started to decline, I continued to push myself to keep up at work and with my training schedule.
Prior to that, I had some degree of post-traumatic stress from the earthquakes in New Zealand a few years before which I believe primed my autonomic nervous system to an extent. I unfortunately also had a couple of people close to me die in the year beforehand including my wonderful best friend.
Over the course of 6 months, I went from working full time and getting up before 6 am to run or swim to ‘losing’ bits and pieces of my life.
During that time, I began to get so tired my husband started driving me to and from work, I stopped making dinner and doing household chores, I started taking sick days here and there, I stopped coping very well with the stress of work and its crazy expectations, I stopped all social engagements, I stopped training, then I took a couple of weeks of work at a time, and I eventually lost the energy to make my lunch for work.
I would get home from work and crash every single evening until eventually I stopped work altogether and existed somewhere between my bed, the couch, the table, the kitchen and the bathroom for months.
Liz: What did you make of all this?
Anaya: At first, I thought it was just a sleep issue. I’d wake up at 2 or 3 am and not be able to go back to sleep and be tired during the day.
Liz: The same thing happened to me. Stress chemicals would wake me up at 3 am and at 8 am I’d be hit with a “wall of tired.” When did you begin to realize something more was going on than just a sleep issue?
Not until after 6 months, having lost most of my capacity.
Even though I had initially felt “let down” by my body, I soon realized that I had really 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.
But looking back, I can see that everything in my life prior to ME/CFS – my years of study in health and psychology, my investment in personal growth, and my athletic pursuits – had actually prepared me for it, and for that I am grateful.
That being said, having always been relatively responsive to my needs, I must say it was quite ironic that I had got to where I was by consciously and deliberately ignoring my inner voice and body (I took a primary school teaching job I knew I didn’t want – I prefer teaching secondary – and decided to ignore feeling tired and push though).
After ignoring my body, it began to say “no” for me in so many ways.
Liz: It seems like CFS happens to people who don’t say “no” – and then our body did it for us.
Eventually, I surrendered to it, but was still thinking I would be OK to begin the next school year teaching (hilarious – I was so delightfully naive).
My life became a mix of surrendering and responding to my body and what it told me it needed, 5 minute jobs (e.g., emptying the dishwasher, walking, yoga, washing – anything that helped me to feel like I was achieving something and contributing) with around 30 minutes rest afterwards.
I couldn’t handle social situations or any interactions that required concentration (driving, reading, watching TV, holding a conversation) and so my sphere became rather small – my husband, chickens and dog.
Liz: I know exactly what you mean. I operated in “beast mode” for many years, and then my body slammed on the brakes after a “Perfect Storm.” My stress meter was dialed up to 11 and my capacity went to 1.
Can you describe your physical challenges?
Anaya: CFS/ME is an insidious thing. From what I can remember, I experienced headaches and “twitchy eye,” a totally messed up sleep cycle, never feeling refreshed, achy/restless legs, brain fog (holy moly brain fog to rival Beijing), heart palpitations, anxiety feelings, a relentless sore throat, feeling sick in the stomach, diminished ability to concentrate, and of course complete and utter exhaustion especially after certain types of exercise.
It took me a long time to realize how completely unwell I was.
Liz: Can you describe your experience finding medical answers?
Anaya: I finally went to see a doctor after 6 months. After two or three visits I was diagnosed with Chronic Fatigue Syndrome (CFS)/Myalgic Encephalomyelitis (ME). The doctor told me surely the most famous of all CFS one-liners: “95% of people do not recover, so don’t get your hopes up.”
My response internally was “Fuck that!” and externally “Well, I am one of the 5%, and I will recover!”
I walked out of the office leaving my slightly stunned husband to follow. Deep down in my soul, I was committed to healing. Following this I did not seek any conventional medical advice whatsoever. It wasn’t for me and I was certain that I knew myself best and could do this – I honestly believe they had nothing to offer me.
Once I wavered and got a book by a CFS / ME expert….. Honestly it was the most depressing out-of-date peice of shit I have ever had the displeasure of reading. I threw it in the fire without finishing it. Crazily enough this person is looked on as my country’s expert (also internationally respected and renown) and doctors seek her ‘expertise’. UUURRGGHHH.
Liz: That experience sounds quite demoralizing – yet sadly better than the many who fail to even receive a diagnosis. Did you continue down the path of seeking answers from the conventional healthcare system?
Anaya: I never went back to the doctor who gave me no hope. It didn’t take being a highly intuitive person to figure out that his brand of conventional medicine had nothing to offer me.
In addition to his gloomy, hopeless diagnosis he had been repeatedly pushing me towards taking antidepressants, despite my protestations that I was not depressed. It seemed all he had to offer me was a pharmacy of drugs which I didn’t need or that wouldn’t ultimately help.
No useful information, no suggestions, no resources.
Some of you may have been lucky and had enlightened and knowledgeable doctors, which is fantastic. I did not.
Liz: When you gave up on the medical establishment, where did you look?
Anaya: Well, myself.
From the get-go, I was determined to both be cured and to heal completely. To heal and to be cured are not the same thing. To be cured means your body recovers whereas to be healed means you need to effect change to all the things that land you in CFS in the first place: patterns, behaviors, and beliefs.
I wanted to be healed because I never wanted to go back to that place. I wanted more for myself. I wanted the learning from this experience so that I could become a better, more complete, richer, more vibrant me.
Along my journey, I made a lot of choices about what I would and wouldn’t try to assist in my recovery. Fundamental to this was the knowledge that I knew myself best. Yep, me.
I am responsible for my health, my well-being and my healing, and I trusted myself to make the best decisions for me.
Something might not have been right in one moment, but two months later it was.
I acted on what felt right and what worked. (In saying that, I realized it is more important you believe something is going to work rather than knowing the exact hows and whys it will.)
Every single treatment I sought, every single thing I did, brought me closer and closer to being completely healed. I believe that and chose to believe that with all my heart.
Liz: Aye. One of the areas people often address is diet. Can you explain the diet changes you made to support your recovery?
Anaya: I have always eaten pretty well – we cook at home and don’t eat out often. I cook things from scratch. I used to be a little obsessed with eating animal based protein (eggs and good quality grass fed meat) – which most of the world seems to be, and had relatively few carbohydrates simply because I’ve never been into rice/pasta/bread etc and ate a good amount of vegetables. Ironically, when I was eating this way I would often get anaemic.
I then changed to a plant-based whole food diet.
My husband and I did this for our health and wellbeing, for sustainability and because we became very uncomfortable with the way animals are treated and farmed.
We threw everything with additives, preservatives, processed and bleached ‘foods’ out of the fridge and pantry.
It was all about quality of food – I am not remotely interested in highly processed vegan sausages or cheese – I don’t consider that food.
We focus on eating plant based whole foods (high fibre and nutrient rich) with a flexitarian twist – if someone was going to offer me a home baked biscuit while at their house, then I would eat it with gratitude and the love that was intended.
We, like many others probably, had thought this way of living might be limiting but in all honesty it has been so freeing. I have a love of food I didn’t possess before, I feel fantastic and incredibly self-loving nourishing my body so well, I love exploring new recipes and foods and the creativity that comes with it.
We were ready for the change, and it has not been hard – it has been a positive lifestyle choice for us both. It also didn’t take long for both of us to feel a shitload more energetic, too, and just so darn good about nourishing ourselves so well. Weirdly, I don’t get anemic at all any more.
Liz: Eating with love and gratitude sounds very conducive for digestion – the ‘rest and digest’ mode. I will remember this. What are some other things you found helpful to healing?
Anaya: I explored meditation, mindfulness, yoga, chiropractic (alternative), acupuncture, energy work, nutritional supplements and detox, vibrational therapy, NLP, and more.
There was no one magic bullet but a series of things that helped me in that moment, at that time.
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.
Liz: Yes. Were there times you were scared of your ‘now’? For me, when things didn’t go away after 10 days…then 10 weeks…I became quite scared about what was going on in my body.
Anaya: Initially, the symptoms were just things that were happening in my body – they were signposts of what I needed to take care of at that time.
But after I realised the quick fix I hoped for might not happen, I became more sensitised to them and they began to take on more meaning.
I ascribed meaning to each symptom. “Oh my throat is sore” meant I did too much (Woe is me…..what will happen now?); “Oh my body aches” meant I am going down hill AGAIN. I was not helping my situation.
This stuff would loop around in my brain, around and around until it started to get ‘hard wired’ and become my modus operandi.
I began to scan my body for these tell-tale signs that I had overdone it and then go in self-protection mode.
There was a point when I must have been scanning my body literally thousands of times a day. This is the part where I got tempted to identify with CFS and make it part of who I was. Thank goodness, I caught myself.
Through self-reflection and a good deal of research, I eventually realized that all this scanning was hardwiring the illness into my neural pathways. I learned scanning and catastrophizing messes with our nervous systems and contributes to multisystem imbalances (endocrine system and digestive system, for example).
Liz: Yes, the Catch-22 of ME/CFS. The stress of it all perpetuates the dysfunction. If our brain’s think we’re in danger, we’re not going to be able to digest our food as easily. And that will block our healing.
Anaya: Yes. I believe maladaptive neural pathways is where the next lot of 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 almost subconsciously until you stop it, which I learned I had the power to do.
These loops are literally fake news, and we know the danger of fake news—repeat it enough and you will start to think it is the truth.
In CFS, our brains become hard-wired that we are not safe and we need to activate our sympathetic nervous system to deal with life-threatening stimulus (when really it was just a tabby cat walking by, or some constructive feedback at work, a walk, or a bad cup of tea).
Now we need to help it learn through constant love, repetition, and support that we are safe, everything is okay, and our bodies are amazing. And so this is what I did.
Liz: This resonates with my experience, too. The stress of my environmental healing blockers and CFS itself perpetuated a fight-or-flight response, and I had to work to heal my brain. How do you get your brain to tell your body everything was okay?
That’s the beauty of our brain and neuroplasticity—we are constantly learning and it is changing and adapting as we do.
My primary focus became calming my body by activating my parasympathetic nervous system, which deals with resting and digesting (and sex).
If you think of the sympathetic nervous system as the accelerator in a car, the parasympathetic nervous system is the brakes.
Liz: What did you do to activate your parasympathetic recovery system?
Anaya: The most effective tool to do this for me was through my breath.
For example, I breathed slowly and intentionally, with longer exhales; hummed as I breathed out; and ahhhhhhhhiiiiinnnng as I breathed out. I focused on making the out-breath longer, which serves to activate the PSNS and bring the nervous system back into balance.
I also used laughter, which is the body’s natural antidote to stress; meditation; and somatics exercises, which are particularly good at releasing deep physical patterns associated with the stress response.
Once I was in a calm and joyful state, rewiring my brain was a lot easier.
Liz: Can you explain how you rewired your brain? This was something I did, as well as I’ve shared, after removing environmental stress and creating calm.
I got busy imagining and creating the future I wanted—energetic, joyful, fun, and 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 reality and more.
In order for this vital and healthy future me to emerge, I needed to be as much like my imaginings as I could.
This meant being very conscious of my posture and my language. I paid attention to how I walked, how I held myself, how my body responded to stress, how I ate, how I sat, the kinds of things I said and how I said them.
For example, in my vision of myself climbing a mountain I was looking up, smiling with the sun on my face, breathing life in deeply, my walk was energetic, purposeful with a spring in my stride, my chest was open and shoulders back, I felt happy inside, my heart was smiling and in my mind I was thinking “I am happy,” “What an amazing life,” “I am so grateful.”
Clearly, sitting slumped with rounded shoulders, frowning, and moving with all the energy of a sloth and thinking “I am suffering,” “I am so sick,” “I am tired” was not going to help me on any level ever! I searched for other ways to acknowledge how I was feeling without taking it on and disempowering myself through language.
“I am tired” became “I am doing tired” which felt like I had a choice, that it was temporary and not who I was, and that my future had new possibilities.
Liz: One thing you and and I previously chatted about about was about keeping activities fun. Can you describe how this helped you?
Anaya: If it is not fun, why do it?
I spent too much of my life doing things because ‘I should,’ and that was how I landed where I did.
Therefore it seemed a great idea to embrace a new way of being and do things because they were first and foremost FUN. So I just got busy doing things that were fun for me – like being out in nature, sitting in the sun, watching birds, and laughter yoga, and eventually biking, swimming, and running again.
Think of how much energy you waste making yourself do stuff you don’t want to do, stuff that isn’t your idea of fun?
Well if you stop doing that, you have all this energy freed up to do the things that you want to do and the added bonus on getting ‘topped up’ with feel-goodness when you do them.
Liz: In the very beginning, you mentioned you had a realization that you would be one of the people who who healed. Can you describe your mindset along your journey?
Anaya: I never took CFS on and made it part of my identity.
My mindset was that I was never “sick with CFS”—I was always “in recovery.”
I never considered the alternative. Sure, at times I sunk into feeling helpless, but I knew deep down that I wasn’t helpless and this wasn’t my permanent reality.
I realized my body was incredibly intelligent, and I needed to get out of its way so that we could heal.
Liz: In our chat we discussed checking in with our bodies without “symptom scanning.” How did you check in with your body?
I actually asked my body each day “What do you need from me today?” “How can I support us today?”
I did this formally in writing and informally while going about life and most importantly, I trusted the information I received and acted on it.
Liz: I love that. You also explained how you looked to “find the good”. Can you describe?
Anaya: I would deliberately do a mindfulness exercise where I would start at my feet moving to the top of my head thanking my body parts for what they did for me and letting them know how grateful I was.
I would also scan for parts of myself that felt great, strong, flexible, happy etc. and revel in that.
Also in this state, I was able to more easily notice patterns, beliefs, and 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!!!
Liz: What patterns and beliefs did CFS/ME make you reassess?
Anaya: I held the false belief that “I am not good enough.” I also felt the need to 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 be incredibly self-critical, harsh, unloving, and downright mean to myself.
Some people refer to this as the “monkey on their shoulder.” Well, I think I had a whole troop of wild, crazy, neurotic, self-sabotaging little rascals on mine!
Liz: Were there any other old beliefs that didn’t support you?
Anaya: Yes. 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.”
My childhood was riddled with feeling like I was the black sheep in the family—of being different, misunderstood, and unaccepted. And in hindsight, I was mercilessly bullied by my siblings. As a result, I continuously adapted, changed, and became a master of “chameleonism”—changing myself to suit my social surroundings, and losing myself in the process.
This belief that it was not okay or safe to be me 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. It does of course differ for everyone, and everyone’s experience is different.
Liz: We’re starting to have more open conversations about how love, acceptance, and community are a part of our health. Where did you find support, if any, during this journey?
Anaya: During those two and a half years I had to surround myself with positive company which included only my husband, my four chickens, and my dog. I would have loved more support on this journey.
My appreciation of those who stayed and were there for me knows no bounds; words are totally inadequate to describe the depth of gratitude, love, and feeling I have for these beings. Just WOW.
I also learned to love myself more. I didn’t relive my past trauma, but instead came from a present place and reassured my inner child she was worthy, safe, and loved exactly the way she is.
Liz: What is the single most important thing you learned along your journey?
Anaya: There is so much that I didn’t mention here—an encyclopedia set’s worth.
I realized my power lies in choosing how I responded to the now.
I mean, the reality is that nothing else really exists!
When you have CFS, there doesn’t seem to be much choice around being fully present because you have no idea what the future holds.
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? To be clear, I did have my ups and downs—of course I did. I had tears, tantrums, loneliness, feeling lost and hopeless, cave times, hysterical tears and a few more tears (apparently tears assist in detoxification)—the whole gauntlet of feelings and experiences.
But deep down I knew it would all be okay, I would get through it, and I would do it my way.
I believed if I literally changed my mind, I could and would change my reality. This was supported by a lot of soul searching, loving, accepting, and most importantly taking care of myself right now!
This is the beauty of CFS—it really brings you fully into the moment.
Living in the present and the now was one of the great gifts of CFS for me.
So I had my moments of now—responding gently and lovingly to my needs and listening to my body’s wisdom. And I was also creating a wonderful future for myself which was reflected in my thoughts, language, posture, and increasingly my beliefs.
Eventually they coincided…and here I am literally living my dreams and my creative imaginings.
Liz: I’m so happy for you. I also am so grateful to be living the things that were once just imaginations on my challenging days. And I know it can also happen for those reading this – yes, you!
What was the defining moment you knew you were recovered?
Anaya: On March 11, 2020 I decided to run an off-road marathon (1000m vertical and 42.2km) and on March 15th, 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 was astounded how mentally strong I was throughout the race – it reiterated to me how much I had grown and how resilient I had become.
Other defining moments in my recovery were those incredible days where I would wake up and totally feel ‘myself’ – my energy, my spirit, my wonderful self. Boy – they felt incredible and so totally joyful.
My autonomic nervous system is no longer wired for CFS/ME. My capacity knows no bounds. I have set myself free from so many limitations, and you can, too. My body is bloody amazing and so is yours!
Liz: Do you have any parting words for our readers, and how can they get in touch with you?
Anaya: I trust and hope that whatever healing journey you are on, something spoke to you.
My parting wisdom to readers is:
You will have your own ideas—I encourage you to trust your knowing and to choose to believe with all your being, that you, too, will 100% heal.
Your body heals wounds like a cut on your finger without your input. It can most certainly heal CFS with your love and support, just as mine did.
Please know that:
You are good enough.
Your body is amazing.
You’ve got this!
You know your body and yourself best.
You are powerful beyond your imaginings and wildest dreams.
And if, in this moment, you don’t quite believe this, then fake it ‘til you make it because you will make it.
The more moments you believe this for, then the more seconds you believe it for; the more seconds, then the more minutes, the more hours, days, weeks until some time in some place it becomes integral to your belief system about who you are.
I send this with deep love for you and for what you are experiencing.
Trust me you have the power within you to get through this and come out of it totally freaking amazing.
Please do feel free to contact me if you want to chat or have questions: firstname.lastname@example.org. I am happy to support you with your journey.
Liz: Are you currently offering 1-1 coaching to people with CFS/ME?
Anaya: In addition to being happy to answer a question or few and have a chat, I do currently offer one-on-one coaching.
Liz: Thank you Anaya. And I love how you did it YOUR way and are now supporting others.
Though I hope our insights can inspire others, we each must ultimately find our own way – hopefully with a little help along the way!