Making Chronic Fatigue Syndrome Visible

I personally have suffered from Chronic Fatigue Syndrome, also known as ME/CFS, since 2015 when I finished my nearly six months of chemotherapy. Consistently doctors refused to acknowledge my symptoms as anything besides laziness. It’s lucky that I sought a second opinion, discovered the enormous tumor that should’ve killed me, and started on chemotherapy right away. While the four-month long treatment saved my life, it also worsened the fatigue the cancer gave me, along with some other more manageable issues.

Thankfully, the CDC now recognizes CFS as a legitimate health issue. Unfortunately, even they admit there is no cure, and treatment is simply managing exertion and stress. This is, of course, impossible for anyone who is forced to work full-time, which is why I nearly dropped dead in early 2020.

On top of my chronic fatigue, I also enjoy diminished lung capacity, a direct result of the cancer and also a side effect of one of the chemotherapy drugs. I also enjoy nerve damage, from the other chemotherapy drug, which isn’t entirely debilitating, but some days, it hurts like hell. You may wonder why I use the verb ‘enjoy’ but it’s either say that or ‘lament,’ Which way are you going to frame your disabilities when we’re given just one stupid body to inhabit in our numbered trips around the sun?

Living with chronic fatigue is like sailing on a sea that oscillates unpredictably between calm clarity and a foggy haze. This condition brings an uneven rhythm to life, characterized by an ebb and flow of energy that defies conventional understanding. On some days, my mind is sharp, my body (mostly) cooperative, granting moments of crystal-clear productivity. Then, without warning, this clarity gives way to a dense fog, where both physical and mental energies are as elusive as shadows in the night.

Some days I have the physical capability, but not the mental focus. Other times, my brain will be turned up to eleven, but my body is incapable of even taking simple notes on what I want to do. Typically, I only have three or four good days out of seven each week. In the midst of when it hits extremely hard, it can wipe out a day and ruin my best-laid plans.

For the past few years, the constant sudden onset of “bad days” creates an apprehension that dampens my spirit. It makes some moments feel like a Sisyphean challenge to remain awake. But, I’ve made the conscious choice to focus on building my mental, emotional, and spiritual resilience by persisting. My ability to keep going lies in expanding my horizons, even in the face of my adverse physical condition.

I’ve learned to find an intricate, paradoxical beauty in these rhythms of light and shadow. These past few months, I’ve been teaching myself to gain wisdom in the midst of these rapid shifts between energy and malaise. Whenever I can’t work, I instead watch videos that educate me on certain topics that interest me. I’ll have my browser read articles aloud. When I can’t work, I do everything I can to learn.

Correctly nourished and guided, the human spirit has the wonderful ability to navigate the most unpredictable situations. When the haze is inevitable, but unpredictably timed, we must learn to appreciate and make better use of the clarity; in weakness, we can find unexpected sources of strength. So, today, while in the midst of one of my better days, I’ve hammered out some actionable insights for anyone of you grappling with similar challenges.

Now, I want to get into three key things that I’ve had to learn the hard way through wearing myself out on failed projects and dead ends. These are celebrating small victories, learning to have a flexible and adaptive routine, and prioritizing self-care.

Celebrate Small Victories

Sure, the spotlight often shines on grand achievements and monumental successes. But, I’ve come to find a secret joy in celebrating small victories. In fact, I’ve come to prefer and even delight in the quiet, unnoticed scenes that unfold in the background, far away from the maddening crowd.

On a ‘good’ day, I may feel able to conquer mountains, but on ‘bad’ days, climbing out of bed feels like summiting Everest. What I’ve learned, though, is that days are not ‘good’ or ‘bad’ unless we make them so. I used to keep telling myself: “Oh, I’m gonna have a bad day today.” That’s just never a good way to start. Having a bad energy or focus level — or both — doesn’t help when you have something important to do. But, on these days, I have to step back and find small victories wherever I can. Sometimes, it may be simply reading a chapter of a book, and finding just one or two thought-provoking passages to take note of for future pondering. That’s where many of my essay — and now newsletter — topics come from, after all.

For me, my favorite thing to read is thought-provoking non-fiction. If a book doesn’t gently nudge your perspective in an unexpected way, or phrase something in a clever way, or give me a topic on a silver platter, I put it away and move on. 

My fatigue has been a sort of blessing in disguise; I can’t waste time on something that doesn’t serve me. This is part of why I don’t read much fiction; I’d love to find some engaging fiction to whisk me away to another world, but I find that writing my own silly fiction serves that function just fine.

Of course, every day, I somehow manage to write a few paragraphs. I have a Writer’s Notebook series that I try to keep up daily. I do miss a day or two here and there, but mostly because I wrote an entire article instead. Even little clusters of words that don’t necessarily flow well are at least an attempt to get something started. On my foggiest days, any sentence I craft is a significant victory dance of neurons. 

I’ve had to learn to stop worrying about the quantity of my output, something that was necessary in my freelancing career. Today, I have no reason to not focus entirely on the quality. It’s a great feeling to string together thoughts that make sense, like building a bridge over a river of muddled thoughts, one word at a time.

So, I invite you to admire your own small achievements, not as insignificant, but as heroic acts in the narrative of your day.Anything that we accomplish that’s positive and pushes us in the right direction must be recognized as powerful affirmations of our resolve.

Even on my slowest days, I’ve learned to hold myself accountable to seeing that progress is still made. Whether that’s my newsletter, or an article on one of my sites, or getting a bit more organized with my archives — any of these three goals is worthwhile. (My fiction is lumped in with my archive maintenance, because it’s lowest priority.)

I invite you to pick two or three projects that you either need or want to get done. Then, every single day, make some progress on at least two of them. Still, sometimes the best victory you’ll get in a day is simply taking a deep breath and trying to refresh your mindset.

These are milestones in their own right, especially during times when every ounce of energy is precious. By acknowledging each achievement, you cultivate a positive mindset that can help counterbalance the weight of the tougher days. It makes losing a day to health issues much more tolerable when you know that tomorrow could be a really great day.

Learn to Be Flexible and Don’t Mind Breaking Routine

I always believed in the philosophy of working smarter, not harder. Yet, I often found myself working harder than everyone else, but not actually smarter. I’m not sure why this disconnect occurred, but I think it came out of frustration of life just not going my way more often than not. As someone who’s absolutely dreadful at knowing how to pace myself, it’s incredible I didn’t work myself into an early grave.

Oftentimes, my limits day to day are only obvious to me when I get dizzy, in pain, or lash out in anger at flubs that I make in exhaustion or lack of concentration. There are days in which I’m perfectly cogent, and yet, can’t move a muscle without feeling like my body is going to fall apart within moments. Other days I’m physically able, but my brain is living in the dense fogs of Mount Everest. There’s rarely anything in between.

So, on days when functioning seems next to impossible, it’s beneficial to be flexible. This doesn’t mean an absence of structure, though. Rather it means adopting a gentle framework that can be adapted based on my energy and mood. The trouble is, I’m also on the autistic spectrum, so if something unexpected happens and interferes with my process, I lose my temper.

In general, my routine is to do most of my heavy writing and editing work in the morning when I first get up. That’s when my mental energy is most concentrated. But some mornings I’ll be lucky to even write a couple paragraphs in my writer’s notebook. I’ve learned that some mornings I can work for four straight hours. Other days I’m lucky if I find the brainpower to even write a smattering of sentences. 

The rest of the day I alternate between light activities I enjoy, such as watching YouTube videos, or reading, or even attempting to make progress on various writing and editing projects. Listening to music or white noise ambient sounds can help, although sometimes I just have to lay down and take a quick nap to recharge my defective batteries. 

At times, I can’t sleep and actually end up being up late, as if just to “make up” for lost time. I try not to be so hard on myself any more. After all, I’m in a position now where I don’t have to work. It’s more for my own overactive brain. Flexibility and routine are two seemingly contradictory concepts that, in the world of chronic fatigue, must waltz together with the grace of a clumsy giraffe on ice skates. Managing myself is often like being a tightrope walker juggling flaming torches while reciting Shakespeare.

So, while I’ve struggled to learn how to manage my energy level most optimally, what I have been improving on most is my adaptability. I may not be fully aligned with my body and mind’s needs just yet, but at least I have come to find some way to be productive even on my worst days. 

Sometimes, there will just be a ‘stare blankly at the wall’ kind of day, and yet, even then, I somehow produce something. As long as I keep any sort of positive momentum, I tell myself that tomorrow might just be the day I start to write the ‘next great novel.’ At the very least, I somehow manage to always have a ‘write a paragraph without nodding off’ day.

Why You Should Prioritize Self-Care

For me, self-care isn’t just a buzzword; it’s a survival tactic. On both good and challenging days, I’ve recognized that self-care is paramount to my well-being. This means engaging in activities that nourish my individuality, such as reading for pleasure, playing games, or simply going outside for a bit to get some Vitamin D. Physical well-being plays a pivotal role in mental health. So, even when good health is fleeting, I know I must take care of myself when I’m not well. That means not overdoing things. 

I always ensure I’m eating nutritious meals, even when my cranky digestive system gives me issues. (Yet another side effect of the chemotherapy.) Getting adequate sleep is also sometimes a struggle, since I also suffer from insomnia — ironically, that happens a lot with chronic fatigue. Also, when my energy level is OK, I try to get some exercise. It’s usually just pacing around in circles or going out on errands with my wife.

Perhaps the hardest part is managing the physical symptoms. This is especially difficult when I also suffer from mild neuropathy, another side effect of the chemotherapy that saved my life. The winter is especially rough, making it very hard for me to type. I’m fortunate that speech to text software is good enough now that it saves some days I’d otherwise be unable to write.

It’s taken me a number of years to get away from being the workaholic I was before getting sick. Building the right type of resilience involves fully accepting my limitations and adapting my expectations. I’ve had to learn to give myself compassion in my weakest moments. Spiritually, I need to find meaning and purpose in the few good days I have, so that when my body betrays me, at least I’m always progressing towards some goal. For me, that’s this daily newsletter.

Before starting these Chronicles of Absurdia, I somehow managed to put out a book of poetry and a book of essays in 2023. But along the way, I abandoned many other projects because I simply lacked the focus or energy to make real headway on them. So, starting in 2024, I put everything on hold to focus on this newsletter Monday through Friday. 

On the weekend, I allow myself to dabble in other things, but only an hour at a time. I’ve decided to focus on short, productive bursts followed by an extended rest period,. So, when I do have good days, or even good nights, I can take full advantage of the stored up reserve.

No matter what, though, I reserve the late afternoon and evenings for my wife. While my struggle might feel personal and isolating at times, I know I’m never truly alone. Sharing my feelings with her helps me cope with my limitations. From her perspective, as long as I’m able to accomplish anything — like writing this newsletter — it’s a valid use of my day.

So, my journey with chronic fatigue is as much about discovering what makes me feel fulfilled as it is about navigating the external world. As long as I can produce at least one meaningful essay or newsletter edition a day, although I always reach for two, I’ve done something. If I’m not up to writing, but I can outline a few future pieces or at least lay the groundwork for more writing, I’m doing OK.

In the zigzag journey of chronic fatigue, prioritizing self-care is an art, a science, and sometimes, a tragic comedy. You must treat yourself with the same kindness and patience you’d offer to a dear friend.

Small Victory Achieved

Our Daily Challenge is typically chosen with the goal to aim for just 1% improvement in your life. With chronic fatigue, I’ve had no choice but to completely arm myself with the philosophy that tiny steps can lead to great achievements. 

Today, your mission, should you choose to accept it, is to recognize and celebrate one small achievement in your day. No matter how seemingly insignificant, you must take a step back and recognize your #SmallVictoryAchieved.

We often overlook the small wins, the modest triumphs that punctuate our daily lives. So today, we turn our magnifying glasses onto these micro-victories, illuminating their importance in our journey of self-growth.

For example, did you manage to make your bed this morning? That’s not just arranging pillows and sheets; it’s setting the tone for an organized day.Perhaps you chose to drink an extra glass of water, nourishing your body one sip at a time.Or maybe, amidst the chaos of a regular day, you found a moment of peace, taking a deep breath and simply being present in that moment.

These actions will never make headlines. They won’t be celebrated with parades or fireworks. But, for your own personal growth, they are your medals of honor, your quiet yet powerful assertions of progress. 

So, as your day unfolds, keep an eye out for these small but mighty moments. When you spot one, take a minute to acknowledge it. Give yourself a mental high-five, a pat on the back, or even a victory dance – whatever celebrates you best. Even share it on social media with the suggested hashtag. (#SmallVictoryAchieved)

Today, by recognizing and cherishing one small achievement, you’re reinforcing a powerful mindset. Every step, no matter how small, counts on the path to a better, stronger, more resilient you. Let’s make today 1% better, one small victory at a time.

Closing Thoughts

As we close today’s chapter in these Chronicles of Absurdia, I want to leave you with a final note of encouragement, especially for those of you who, like me, are navigating the challenges that come with “invisible illnesses” like CFS, Long Covid, or any number of other misunderstood maladies.

To all my fellow travelers on this winding path, know that your struggles, though often unseen, are deeply acknowledged and understood by me. Each day you face may feel like a solitary journey, but you’re actually part of an often silent community bound by shared experiences and unspoken understanding.

Invisible illnesses offer a unique personal challenge — the difficulty of being understood and acknowledged in a world that often values what can be seen and measured.But here, this can be our shared space, your struggles are visible and valid. Your pain, your fatigue, your highs, and your lows, are all recognized by the Chronicles of Absurdia community as vital steps in your incredible journey.

I urge you to hold onto the knowledge that your experiences, though daunting, are helping build a strength within you that’s as real as any visible feat of endurance. Your daily battles, your small victories, and even your moments of rest, are all acts of courage. So, as you continue your journey, remember to be gentle with yourself. Celebrate your wins, no matter how small. Seek comfort in the knowledge that you are not alone, and your experiences contribute to a broader understanding of what it means to live with an invisible illness.

While my own good days and less-than-good days aren’t consistent, I’ve learned to better recognize the value in every moment. I share my story so that you can learn from my own struggles. It’s entirely possible to transform even the toughest days into opportunities for growth and reflection. Life’s ebb and flow is part of its terrible beauty, and believe me, you don’t want every day to be the same.

In solidarity, I stand with you, acknowledging your challenges and cheering for your triumphs. Keep moving forward, keep finding joy in the small things, and most importantly, keep embracing your unique journey with courage and hope. For the healthier among us, I hope that these tips may even help us all to lead even happier, healthful lives!

Until our next issue, may you find strength in your resilience, joy in your journey, and a community in our shared experiences. Remember, in the Chronicles of Absurdia, every chapter of your story is valued and important.

Take care, and keep writing your extraordinary story,

~ Amelia Desertsong, January 22, 2024

Amelia Desertsong is a former content marketing specialist turned essayist and creative nonfiction author. She writes articles on many niche hobbies and obscure curiosities, pretty much whatever tickles her fancy.
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