Chronic Fatigue Syndrome: A Heroine’s Journey

When I was diagnosed with Chronic Fatigue Syndrome (CFS)/Myalgic Encephalomyelitis (ME) two-and-a-half years ago, the doctor told me surely the most famous of all Chronic Fatigue Syndrome one-liners: “95 percent of people do not recover, so don’t get your hopes up.” My response was, “Well, I am one of the five percent, 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. The mindset that I was never “sick with Chronic Fatigue Syndrome”—I was always “in recovery”—plus the fact that I never took Chronic Fatigue Syndrome on and made it part of my identity and who I was served me very well indeed.

Everyone has their own experience with the diagnosis and journey of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. 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!

No Limitations

I mean, on March 11th, 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 return 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 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 too. My body is bloody amazing!

When Chronic Fatigue Syndrome is a Solo Journey

I never went back to that doctor. In addition to his gloomy, hopeless diagnosis, he had repeatedly been pushing me toward taking antidepressants, despite my protestations that I was not depressed. It seemed all he had to offer me was a pharmacy of drugs that I didn’t need or that wouldn’t ultimately help. No useful information, no suggestions, no resources. It didn’t take being a highly intuitive person to figure out that his brand of conventional medicine had nothing to offer me.

Some of you may have been lucky and had 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. Yep, me. I am responsible for myself and answerable to myself. I took responsibility 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 decided to trust myself and trust my amazing body to know. I acted on what felt right and what worked. After all, even though I had initially felt “let down” by my body, I soon realized that I had let my body down.

Our Bodies Want to Heal

I had pushed it relentlessly, I had nourished it poorly on many levels, and worst of all, I had consciously chosen to ignore it. Yep—I had decided that I would ignore being tired on the weekends and do what my mind wanted to do, which at the time was train for an adventure race.

I soon realized my body was incredibly intelligent, and I needed to get out of its way so that we could heal. My body is amazing, and so is yours! Your body heals wounds like a cut on your finger without your input. It processes food, takes out goodies and excretes the rest. It can most certainly heal CFS with your love and support, just 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 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 Chronic Fatigue Syndrome in the first place: patterns, behaviors, and beliefs. I wanted to be healed because I never wanted to return 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.

How Beliefs Can Contribute to Chronic Fatigue Syndrome

For example, I believed that “I am not good enough.” So I felt I had to prove myself, achieve things, not accept myself as I am, and always try to be more and 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!

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, it did not feel safe for me to be me, so I continuously adapted, changed, and became a master of “chameleons”—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” and no people.

Chronic Fatigue Syndrome: A Lonely Disease

Quite an irony that I ended up experiencing Chronic Fatigue Syndrome, which for me was an incredibly isolating, lonely condition that very few people understand, including those who have it. It does, of course, differ for everyone, and everyone’s experience is different. Chronic Fatigue Syndrome is not life-threatening on a cellular level—you are not actually going to die from it. The trouble is your body thinks that you actually are in a life-or-death situation and keeps responding accordingly.

Even though you know you will live through this, you experience your life being threatened in other ways, and you have no idea, no certainty as to when or if it will end. This is one of the things that makes Chronic Fatigue Syndrome really tough.

Chronic Fatigue Syndrome and Loss of Freedom

Imagine if the following things in your life were under threat for an unknown period of time:

1. Your independence: You have to rely on others for day-to-day care, including cooking, cleaning, washing, and driving.
2. Ability to provide for yourself financially: You may be unable to work, may need to depend on others, including your parents, or even live with your parents again.
3. Your career: If you’re unable to work, your career could potentially go down the tubes.
4. Social life: People stop calling ’round. You are homebound, so it’s hard to meet new people.
5. Romantic relationship: Some relationships are pushed to the breaking point with this, and others may not know when they will have the energy to form one and invest energy in it.
6. Health: You have limited physical, mental, and emotional function.
7. Physical activity: You may be restricted to lying down all day, and walking to the bathroom is a mission. Others have more capacity but still much less than “normal.”
8. Ability to think and concentrate: You have a reduced capacity to deal with multiple sources of information, and you may be unable to drive or even read.
9. Your hopes and dreams, and ability to plan the future: Not knowing when this will end or how much energy you will have at any moment in the future makes planning and committing to things pretty much impossible.

Your Support System Matters

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, but sadly, people I had thought were friends or who cared simply disappeared. 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.

Change Your Mind, Change Your Reality

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 right now! Living in the present and the now was one of the great gifts of Chronic Fatigue Syndrome for me.

When you have Chronic Fatigue Syndrome, 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 truly have is this present moment.

So what are you going to do with that? What choices are you going 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—the whole gauntlet of feelings and experiences. But deep down, I knew it would all be okay. I would get through it and do it my way.

What are the Symptoms of Chronic Fatigue Syndrome?

Chronic Fatigue Syndrome is an insidious thing. 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 (holy moly, 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 time to realize how completely unwell I was. My husband would say I actually never really did, and I have to agree.

After all these dots were connected to form a diagnosis, I became super sensitive to these symptoms. I constantly scanned my body for these telltale signs that I had overdone it. I must have been scanning my body literally thousands of times a day. Because I was doing so much scanning, I hardwired the illness into my neural pathways, making it my new normal.

From there, I became over-sensitized and attached to the thought symptoms that resulted from the physical scanning and ascribed meaning to them. “Oh, my throat is sore,” meant I did too much. “Oh, my body aches” meant I am going downhill AGAIN … blah blah blah … you get the idea. I was not helping myself. This stuff really loops around in your brain, around and around, until it becomes firmly entrenched.

The Trouble with Identifying with Chronic Fatigue Syndrome

This is the part where I got tempted to identify with Chronic Fatigue Syndrome and make it part of who I was. Thank goodness, I caught myself in this lie. From here, the scanning and the meaning you give it loops around and around, telling you that you are not safe, you are not well, things are not okay, all is not well, and so on. This catastrophizing messes with your nervous system and leads to multisystem imbalances (endocrine and digestive systems, for example). I believe this 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 relentlessly until you stop it, which you absolutely have 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.

Chronic Fatigue Syndrome and the Brain

You see, really, all that has happened is you have created some maladaptive circuits in the brain that absolutely can be changed. That’s the beauty of our brain—we are constantly learning, and it is changing and adapting as we do.

In Chronic Fatigue Syndrome, 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.

Now we need to teach it, and it needs to 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.

How I Healed Chronic Fatigue Syndrome

My primary focus was on calming my body by activating my parasympathetic nervous system (PNS), which deals with resting and digesting (also sex). If you think of the sympathetic nervous system (SNS) as the accelerator in a car, the parasympathetic nervous system is the brake.

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, activating the parasympathetic nervous system, and bringing 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 you are in a calm and joyful state, rewiring the brain is a lot easier. 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, and doing 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 great habit, and now all those things I imagined are my current reality and more.

Also, in this state, I could 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 me very clear guidance 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!!!

For this vital and healthy future to emerge, I needed to be as much like my imaginings as I could, which meant being very conscious of my posture and 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.

Reprogramming the Brain

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,” and “I am tired” was not going to help me on any level ever! I searched for other ways to acknowledge my feelings without taking them 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 I was empowered to change it at any time. It is powerful stuff.

Yoga, Mindfulness, and Other Complementary Treatments

Every treatment I sought and everything I did brought me closer and closer to being completely healed. I explored meditation, mindfulness, yoga, chiropractic, acupuncture, energy work, a whole-food plant-based diet, nutritional supplements and detox, vibrational therapy, Neurolinguistic Programming, and more.

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 Chronic Fatigue Syndrome—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 and listening to my body’s wisdom. And I was busy creating a wonderful future for myself. This 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. My brain is no longer wired for Chronic Fatigue Syndrome. I no longer scan and no longer have any of the condition’s limitations.

You Can Do It!

This is my experience, combined with my research on Chronic Fatigue Syndrome and some ideas about what I know helped me heal fully. There is so much that I didn’t mention here—an encyclopedia set’s worth! I trust and hope that whatever healing journey you are on, something spoke to you. You will have your own ideas—I encourage you to trust your knowledge and to choose to believe with all your being that you, too, will 100 percent heal. 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 deep love for you and what you are experiencing. Trust me. It is temporary, and you will get through it and come out of it totally freaking amazing.