I Am Whole: ME/CFS and The Building Blocks of Acceptance (Pt.1)
Acceptance of and living with ME/CFS is a process of rebuilding.
Acceptance of and living with ME/CFS is a process of rebuilding.
Living with a chronic illness is debilitating and destabilizing. I’m always asking myself, is this is feasible? Can I live the life I want with a condition as intrusive as ME/CFS? How can I hope to accrue wealth and provide for myself and my family when most days I only have the capacity to do the bare minimum?
It’s a dark place we go down, spiraling until we hit the hopelessness of the bottom.
But, over time, I’ve learned key lessons about ME/CFS and myself. Namely, the importance of acceptance as a building block for accomplishing what I want to do. And, understanding what really matters in my life.
ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) is a little understood and largely overlooked chronic illness which impacts between 17~24 million people worldwide. Onset is unknown, transcends all groups, and ranges in symptoms from bone-deep post-exertional malaise to all-encompassing brain fog.
You can’t live the life you knew or expected because your ability to jump at any opportunity just isn’t there. Simply, life with ME/CFS is a continuing struggle to pick up the pieces, even as more of you crumbles away.
Taking A New View
In this way, living with ME/CFS is like reforging something broken into something new. Something more beautiful than what it once was. Each chip, crack, and blemish isn’t a pile to bemoan, only to mold.
Like a fine art.
In that sense, having ME/CFS is like practicing kintsugi, the Japanese art form of repairing broken pieces of ceramics with lacquer and gold (or silver) dust.
The result is something that prominently showcases the cracks but is even more beautiful for it. It’s a practice of remaking something into a beautiful form rather than tossing it away.
That’s why kintsugi isn’t just an art form for broken pottery; it’s an approach to life.
Consider a life with ME/CFS, entirely shattered from the goals and aspirations one had prior to getting ill. We struggle each day to muster the capacity to make it through, never quite sure what each new day will bring. We feel broken and far away from anyone else.
Kintsugi, then, represents a new outlook. One where we aren’t broken, but rather in the process of being remade.
It’s a mindset change — and one needing constant checking — to see oneself not as a broken piece of pottery cast aside on the floor. We have to develop the skill, just like any other, because it requires self-management skills we never learn as healthy individuals.
Through our true acceptance of our illness, we become stronger than when we were healthy. We are truer to ourselves.
My story with ME/CFS began in 2010, but I didn’t start living with ME/CFS until I had a severe relapse on October 31, 2017.
What do I mean by my not having lived with the illness?
For the first seven years of this traumatic change, I lived outside of myself watching from a distance. I wasn’t living as a chronically ill person because I wasn’t accepting the changes in my life. I was pretending they were happening to someone else.
Denying the changes that had occurred kept me attempting to live in a healthy state I no longer possessed. Acknowledging the debilitations of ME/CFS would mean I was ill, would mean, I thought, that I was in some sense broken.
It took me those seven years to realize:
Living with ME/CFS didn’t make me broken. It was my own desperate clutches to the normalcy of the past which did. I was fully capable of becoming whole again.
That’s how I learned to develop my own practice of true acceptance.
I think it’s important to note here that not everyone will develop the same formula. Others, such as the severely ill, may not be able to create such acceptance. So, understand this is both a personal development I went through.
As someone who falls somewhere in the 50~75% capability, this may or may not apply to more severe cases, but I encourage you to read through and comment your own story.
*This article is based on my own path to acceptance, which I’ve written about elsewhere. This attempts to be more in-depth with the development of such a practice.
Recognizing The Push-Crash Cycle
We all know the torture of the push-crash cycle: the assumptions, the attempts, the failures, and the immediate regrets. There’s heartbreak, depression, the downward spiral…
Without thinking too much about it we blame ourselves for everything; from doing too much to not doing enough. Many of us shoulder humiliation after humiliation because we are fighting something no one else can see or, often, believes exists.
Sometimes, pushing on is the only thing we think we can do.
Nothing prepares you for ME/CFS, so who can blame you for keeping old habits? When you’re lying on the crumbled ruins of your life, you’re naturally anxious about getting back to your old life and so you did what worked when you were healthy.
You try harder, you push and push — and you crash.
If you are like me, slowing down was/is hard. I wanted to do what I did before because that was all I knew. I couldn't conceive of another way. Getting into the push-crash cycle was all about maintaining a semblance of the life I had before.
And, ultimately, this is what the push-crash cycle is:
The push-crash cycle is a way of denying the present in favor of a romanticized past and fictionalized future.
The first step to true acceptance for me was recognizing the cost of being in the push-crash cycle. Only once we can see vividly how toxic and counter-productive it is can we look for other solutions. To understand this at the level we need to acknowledge this, though, is challenging.
Recognizing how devastating the push-crash cycle was to my health required acknowledging how truly ill I was. The trauma of becoming ill is equal to the trauma of recognizing you are ill and not coming out of this.
The reality was that, try as I might, I couldn’t do the things I did before, yet I demanded myself to be able to. It wasn’t just me, though, it was the message I received from others external to the situation, as though they knew what was best for me without having any clue what ME/CFS was.
In understanding I wasn’t going to magically get better and I alone could find my own way through this I was able to step away from the toxicity of the push-crash cycle.
Just like the anxiety, frustration, and anger that comes with jumping into unknown territory, the only way to persevere in finding a new way is resetting one’s mindset.
Developing A Calm Mind
As we pull away from the push-crash cycle, we will stumble.
When anxiety, depression, and a desperate need to escape from the symptoms of the illness set in, we need to have clarity. We need to be able to see the path when everything is too heavy.
What we need is to develop a calm mind.
By doing so, we maintain our connection to the present moment. Personally, I found that developing a calm mind allowed me to remain embedded in the present while swatting away the fantasies I tended to escape into.
In terms of personal development, I was able to outline or even embrace my current situation without adding the emotional baggage of fantasy or negativity.
It takes time and a massive amount of effort to develop, and every person will find different things that work for them. Some things I’ve done to help me develop a calmer mind:
- Remove all stimuli. By turning off lights, closing blinds, isolating, and the addition of noise-canceling headphones and eye masks, I found a method to calm the overstimulated symptoms of ME/CFS.
- Use a recliner and listen to music. By removing my weight from my lower body and listening to music, I am better able to keep myself in the present. It relaxes my mind by giving me an opportunity to refocus, calm down, and return to a comfortable state.
- Allow myself to feel the symptoms. Before, I would flat out deny I felt post-exertional malaise or any fatigue from simply walking down the street. As I learned to accept my illness, I allowed myself to feel the extent of fatigue, migraine, or whatever symptoms I was feeling. In this way, I learned to understand just how serious an episode was and what I was capable of during those episodes.
These are some things that allowed me to focus on what matters. This, as an extension, allowed me to step into more meditative practices that meant I would use my body and mind in more positive ways.
This changes your perspective. By developing that calmer mentality and stepping away from the push-crash cycle, you’re able to see yourself and your situation in a new light.
You learn to take time out of your day for yourself.
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