When Chronic Fatigue Strips You Of All That You Thought That Your Were

Six years ago, I was a high-functioning and successful Type A personality who had seemingly achieved success in all areas of life. I was an overpaid department head who excelled at my work. I had a fit an athletic body and loved teaching others how to achieve the most challenging poses in yoga. I had a solid side hustle and a mastery of meditative me-time. I read multiple books each month and had creative hobbies. I had several good friends and was close to my family. I was a glowing billboard for the latest and greatest self-improvement hacks…until the lack of sleep of caught up with me.

To be honest, I can’t say for sure that prioritizing career, workouts, and social life over a full night’s rest were the culprit but, knowing what I know now about the function of sleep, I feel confident that it was a contributing factor. If you only fill the gas tank in your car halfway day after day, you may one day find that you are out of fuel and your car now requires the premium formula to get started, let alone get you through the day. Six years ago, I was sleeping between three and five hours per night. Today, I require on average eleven to twelve hours of sleep per night to function, and closer to fourteen if I’m hoping for a good day.

Though it took me over five years to have my post-fungal fatigue medically acknowledged and formally diagnosed, the chronic fatigue, brain fog, and muscle weakness have been unwelcome guests this entire time. I can no longer do any of the things that I defined myself by at age 25. Now, I’m just someone trying to get by and–hopefully, one day–recover fully from chronic fatigue syndrome, colloquially known as CFS.

When I first began college, the hardest part for me was adjusting from being in the top 3% of my high school graduating class to being just average at the university level. I remember getting a B on my first Biology test and a C in Philosophy, just shy of the class averages. I have never been an egotistical person, but that realization shattered my concept of self. If my top attribute is no longer intelligence, that what am I? Who am I?

Coming to terms with chronic fatigue syndrome has been a painfully similar experience. However, unlike grades, the understanding did not come all at once. The realization unfurled slowly like a small rose being overwhelmed by sprawling bramble. First, a general fatigue set in and I was never at more than 70% of my previous energy and capabilities. Shortly thereafter, I was right around the corner from bench-pressing my weight when my fitness began to decline; within a week, my legs shook tremendously with simple body weight lunges and the exercise required a full seven for recovery. Many years later, I would learn this is called post-excertional fatigue (PEM) and is a hallmark of CFS. Next, it was the memory issues, brain fog, and localized headaches. I forgot tasks that were written in my planner and birthdays that had been memorized for years. I often left work and arrived home with no recollection of portions of the lengthy commute. Later, I developed issues with muscle strength as my energy reserves ran out, so I required help walking to bed when little earthquakes in my nerves sent my knees buckling.

Throughout the first three years, I was in deep denial. I convinced myself and (almost) everyone around me that there was nothing wrong with me, just normal high-achiever fatigue. That’s a thing, right? By the end of the day, I didn’t have the energy to keep acting and my boyfriend saw right through my charade. He insisted I see specialist after specialist to figure out what was wrong, and part of me resenting him for calling it what I was willing to see. But, on a deeper level, I think I knew he was right and only trying to help. Looking back, I am so grateful that he was willing to fight that battle when I pushed back so against it.

By the fourth year, I was so fed up with being sick that I went full-bore with Western medicine. I had lost friends, was struggling at work, and there was no end in sight. I underwent a battery of heart tests, overnight sleep studies, nerve and muscle tests, a cardio-respiratory test, a tilt table test, a PET-CT scan, biopsies, a lumbar puncture, and countless more labs and scans. I siphoned nearly $30,000 from emergency savings and down payment savings accounts. There were lots of anomalies, but nothing concrete enough for a diagnosis. We still did not have an answer.

Year five was spent working with an expensive concierge integrative doctor, naturalistic approaches, and labs that insurance will not help with. I learned that I have gut issues (intestinal permeability, no good bacteria, an abundance of pathogenic bacteria), dozens of severe food allergies (likely due in part to the leaky gut), low levels of several vitamins and minerals, and poorly functioning mitochondria. Low-dose naltrexone changed my life for twelve days and renewed my hope for recovery. Later that years, I began working with a savant dietician with a PhD in biochemistry and a photographic memory. He performed a hair tissue analysis test (HTMA), another crazy idea that actually makes some sense. Based on my levels and ratios of certain vitamins, minerals, and toxins excreted by my body through the hair, he prescribed a diet and supplements to guide my recovery. That has been the single action that has made the most difference for me.

So, getting back to the point of this whole thing.

What is the best way to respond when it’s revealed that your carefully curated life has been changed, perhaps forever?

It’s taken me far to long to come to terms with the idea that it is okay that my life looks different now than it did in the past. It’s okay! The most empowering thing I have done is to focus only on those things which are under my control. I sleep when I’m tired, I eat nutritious food, I give my best effort at work, I try to be kind to anyone I interact with, I try to exercise a little bit each week, and try to practice a bit of creativity.

I have learned to conduct daily and hourly assessments on how I am truly doing and what I have the energy to accomplish. I reset the bar each day, identifying an easily accomplished goal. Whether it’s going for a walk, completing a task for work, spending thirty minutes reading, trying to notice something unique out the window, or simply eating a healthy meal, every day I can reflect on one small win. I often don’t have the energy to do much more than merely exist, so re-framing the minute as major highlights makes what I would have once viewed as failure as an accomplishment.

I have relatives suffering from long covid and worry that thousands are facing this same dilemma. What can you do when your body doesn’t heal fully, quickly, or in the way that we would hope? What can you do when your big dreams are suddenly out of reach? I think we each need to face the harsh reality of our own situation and then follow our own journey towards acceptance. Yes, things may be different, but they could be better.

Over the last six years, by necessity, I’ve learned to truly listen to my body. I trust my body as a child would, sleeping when I’m tired, eating when I feel hungry, and saying no to the things I don’t have energy. I have prioritized my healing and invested time, money, and effort into taking the actions within my power that may support my body. I quit a stressful job for a data entry job with flexible hours and no career ladder. I’ve learned to let go of concerns about what others may think. If you’re not seeking approval, they have no power. I have learned to meet myself where I am and appreciate my efforts over my ability to follow through. I have learned to accept that many things have changes, but have realized that–even with all the trapping and awards stripped away–I am very much the same. I am kind and thoughtful and curious, even without the energy to act upon these inherent traits. I am a good person.

Self-help gurus often advise us to compare ourselves to our previous selves rather than the Popular Peoples of The Internet. When you’re suffering from crippling fatigue, mental fogginess, and pain, it’s not fair to compare yourself to a previous version of yourself that was not afflicted with these limitations. Instead, we need to let go of any comparison and just sit with where we are and what feels possible in the current moment. Sometimes the answer is disappointing, but occasionally the brutal honesty will reveal a secret store of energy that will power you through a few sun salutations, a phone conversation with an old friend, or a walk around the neighborhood.

I feel that I have made slow by steady progress over the last eighteen months, with a few promising and particularly rough periods sprinkled throughout. But the key is that I made progress. I recognized those things that were within my control, I exercised personal accountability, and then I did my best. As I prepare for my annual year-in-review, as I have for the ten years, I’m actually looking forward to noting that I accomplished very little this year because the one thing I can check off my list is being okay with being just me–with my mediocre career, inconsistent creative habits, few close relationships, and an inability to follow most conversations.

When I developed valley fever in March of 2015, I had a huge glass whiteboard on my wall with dreams, goals, and to-do lists. Over the last six years, the goals disappeared and were slowly replaced by “the derp board,” which captures all of the heinously wonderful things that my fatigued brain has come up with (e.g. “it’s in the back bottom kind of top right left,” and “that was funny, but I forgot to laugh”). I suppose this board is the perfect analogy for my life. The ambitions and accomplishments were wiped clean and I was given a fresh start. I’ve spent several long years trying to make sense of circumstances and redefine myself, with the output being an abundance of jumbled nonsense. I trust that one day, I’ll be able to refashion the experience into wisdom.

It’s been a journey and the path is still rocky with many forks and an unclear destination, but the difference is I’m no longer concerned with the destination. I don’t care about money, accolades, or popularity. All that matters anymore is contentment. If I can watch the little black bird outside my window and smile, that’s a good day. If the money I began saving for retirement as a teen sees a stock market boost, I thank my younger self for the forethought. If my boyfriend points out something ridiculous I just said, I can laugh at myself and not feel ashamed. If I were comparing myself to others, I would consider myself complete and utter failure on all fronts possible right now. But I don’t compare. And, so, I am happy. I am content. I am okay with where I am in life because I am doing everything in my power to care for my mind, body, and soul. Once those areas are replenished, everything else will follow, or so I like to believe. I am on my path and I am moving forward and, at least for now, that is enough.

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