20+ Years as a “Long-Hauler”: Living with Chronic Fatigue Syndrome (CFS) / Myalgic Encephalomyelitis (ME)

According to the Mayo Clinic Website (note the comments in bold are mine):

Chronic fatigue syndrome (CFS) is a complicated disorder characterized by extreme fatigue that lasts for at least six months (or 20 years) and that can’t be fully explained by an underlying medical condition. The fatigue worsens with physical or mental activity but doesn’t improve with rest.

Other characteristic symptoms include:

  • Sleep that isn’t refreshing–YES, DAILY!
  • Difficulties with memory, focus, and concentration–YAH!
  • Dizziness that worsens with moving from lying down or sitting to standing —SOMETIMES
  • Doctors who have no answers after spending 10 minutes on your case or any idea as to your past accomplishments, saying “maybe you’re a little depressed.”

This condition is also known as myalgic encephalomyelitis (ME). Sometimes it’s abbreviated as ME/CFS. The most recent term proposed is systemic exertional intolerance disease (SEID)–HUGE ISSUE!

The cause of chronic fatigue syndrome is unknown, although there are many theories — ranging from viral infections to psychological stress. Some experts believe chronic fatigue syndrome might be triggered by a combination of factors. –suspect a severe case of viral pneumonia in Japan followed by salmonella on Bali (travel isn’t all glamour 😉

There’s no single test to confirm a diagnosis of chronic fatigue syndrome. You may need a variety of medical tests to rule out other health problems that have similar symptoms–and spend all your time, money, and sanity schlepping around from doc to doc, dept to dept. Treatment for chronic fatigue syndrome focuses on improving symptoms–AND IS TOTALLY LAME. They all follow the same ineffectual protocols–it’s groupthink run amok.

While COVID-19 is a terrible tragedy on so many levels, for the first time, I feel optimistic and less alone. Suddenly, the news is rife with stories of people suffering from many of the same symptoms I’ve struggled to manage for decades. It’s hard to watch: many of them are young, like I was, suddenly debilitated by fatigue in their prime on the cusp of great things: careers, marriages, starting a family.

When I say “debilitating fatigue” what do I mean? The kind of fatigue that prevents you from hopping on a train for an hour to catch the women’s doubles at Wimbledon, or even take a shower. It’s a kind of tired that leaves you stranded in the dairy aisle of Cub because you don’t know how you’re going to carry the milk all the way to the front of the store and back to your car. If you do push through it, you know it will mean an hour’s nap once you get back home. It’s the kind of fatigue that seems so irrational to your friends and family, they start to lose their grip right along with you. You’re forced to say “no” to so much that pretty soon the invitations stop coming altogether.

Approximately 1-2 million Americans suffer from CFS/ME. According to the article “The Tragedy of the Post-COVID ‘Long Haulers'” (Health.Harvard.edu) that number could double in the next two years due to the COVID “Long Haulers” / “Long COVID” sufferers. Trust me when I say, our healthcare system IS NOT ready for this. My heart breaks knowing so little has been accomplished on the CFS/ME front in the past decades and the frustrations the afflicted will face. 

Why so little progress? First, I think many sufferers are women. All the Infectious Disease and Internal Medicine docs I saw were men. What they had in common: terrible listeners, very “busy and important.” Secondly, CFS/ME patients are lousy advocates. Why? They’re TOO TIRED!  It may take half a day to get ready for an appointment and another half day’s nap to recover. All that to hear the same BS and see the same lab-coat shoulder shrugs.

In one of my final appointments, the doc tried to write me a script for Prozac after 5 mins. My husband started cross-examining: What’s the “end game”–is she on it forever? Why do you think she’s depressed? To this day, we’re not sure if we stormed out or were thrown out of his office!

Luckily, somewhere along the way, when I still had some energy, I had taken a few yoga classes. I found myself in a situation where my energy improved somewhat (as it always does with an international move–more on that later) and I could commit to a weekly yoga class. It became clear to me that I got a hella lot more out of yoga classes than doctor appointments. Slowly, my health improved, but in fits and starts.

Remember, the “C” in CFS is for “Chronic.” It never goes away; it’s a condition that has to be “managed.” I basically fired all my doctors and started managing it myself, primarily through yoga, and not just any yoga.

One of the most frustrating symptoms for a former athlete is the post-exercise malaise which is perhaps why experts are starting to refer to it as systemic exertional intolerance (SEID). Luckily my first teacher was a classically trained yogi and Zen Buddhist in Singapore. She was in her 60’s and strict. She did a lot of seated meditation and it showed in her approach. She knew that the “exercises” were to be done as meditations, not gymnastical performances. There was plenty of time to phase in and out of the pose, downshift if need be, and integrate between poses. There was no distracting music or mirrors around. The point was to reside in your body (not let your mind drift) and find the “seat of the pose,” the asana, and most importantly, accept how it was for you that day. No comparisons to last week or last year.

When I got back to the States, I was shocked at what was passing for “yoga” and couldn’t find a class. I finally came across a Kripalu teacher on Cape Cod. If you would’ve told me when I could barely shower and shop that I’d enroll in a 1-month residential yoga training of all things yoga from 6am to 10pm, I wouldn’t have even dared to dream. I became certified in 2001. Confession: there was a break in the afternoon, so I could catch a nap; otherwise, I don’t think I would have made it.

I started teaching yoga full-time and never really went back to my “professional” pre-yoga life. Turns out, CFS/ME had taught me a lot. First and foremost, you have to have a strong purpose, a mission for your life that, against all odds, gets you out of bed in the morning. My first mission was “heal thyself.” Accepting that I’d maybe be lucky to reclaim 80% of my previous energy was a big part of that. The mission is never over, as I don’t dare grow complacent. I’m always trying out the latest “life hacks” to boost my energy and clarity; and, I’ve even invented a few on my own. I relish sharing what I’ve learned with others, especially those with similar symptoms who might be dealing with anything from Lyme disease to fibromyalgia or just general burnout.  I have a lot more patience and empathy for sick people and the difficulties of aging. I felt I had more in common w/ ninety-somethings in my 30’s.

I also learned that a good shot of natural adrenaline does wonders. Travel has always been my jam. I crave the buzz of being out of my comfort zone–a buzz I used to enjoy as a lifestyle pre-CFS. Now, I get to share some of my favorite destinations with my students. Yes, I do get nervous contemplating how people are entrusting me with their vacations, some of the most important days of their year; but, it’s the good kind of nervous–those butterflies keep me energized. I also treat myself to the occasional trip to Japan to re-immerse myself in the language. You just don’t have time to be tired in Tokyo: 30 million people in a bizarre vortex where the ancient and futuristic intersect. I throw myself into the mayhem, feed off the flow and go-go-go. I do “pay” for it though when I return, but to me, it’s worth it. 

Conversely, I’ve learned to protect my energy and avoid things that drain me. I view energy as a finite quantity to be “spent” carefully. Bureaucracy, in-the-box thinking, and unnecessary paperwork are best avoided; so are social-climbers, one-uppers, and fixed mind-setters.  I have come to realize that “busy” and “important” are not the same things. I avoid conversations about errands and to-do lists. There seems to be a uniquely American pastime I term “competitive busyness” –something I wouldn’t have noticed before CFS–in fact, I may have mastered it at one time.  It’s a lot of “jumping up and down, calling it progress”–and then telling everyone about it.

My purpose now is to use the energy I can muster to make as much of a positive impact on the lives of my students as possible. Happiness for me requires a yoga mat, a library card, and yes, a passport. If you’d ever like to discuss books, travel, or yoga, I’m all ears and will stay awake for that. If you want to learn more about what has and has not worked for me in terms of CFS/ME, I’m also happy to oblige. I hope to set up a Zoom practice for CFS/ME/COVID Long Haulers soon, so do get in touch via the contact page if that applies to you.