20 years ago there’s no way in hell I would have considered a diagnosis of Chronic Fatigue Syndrome (CFS) a blessing. I was struggling. Struggling to breathe. Struggling to work. Struggling to play. Struggling to socialize. Struggling to walk. Struggling to talk. Struggling to get pregnant. Struggling to want to be seen in public. Struggling to want to stay alive.
Today, as I reflect on how I felt over 20 years ago, I have so much compassion for my struggling, exhausted self, who was frustrated by an unknown cause of my constant breathlessness, lack of energy, and persistent tender lymph nodes on the sides of my neck. I felt half-alive and 100% frustrated by no one seeming to know why they hell I FUCKING…FELT…LIKE…CRAP.
My journey with CFS is a long one, spanning several decades, so I’ll share my story one course at a time. And, why share now? I’ve been recording my Spiritually Fit Yoga podcast for over a year, and while I’ve shared transformational stories about my guests, I’ve never shared my own personal story about living with Chronic Fatigue Syndrome. Several students and listeners have asked “I’d love to hear more about your CFS story.” In honor of my 100th podcast episode (wow!) and for those of you wanting to hear more about my transformational journey, this is for you.
So, here’s Part One: the beginning of feeling like crap, and the beginning of my yoga journey.
THE STRUGGLE TO BREATHE.
A little health history background about myself: I was born in 1964, a month premature, a c-section, formula-fed baby, healthy and strong. As a kid I rarely got sick, I didn’t even take aspirin, I don’t ever remember getting the flu shot, I had a few infections requiring antibiotics, I slept like a champ, annoyed friends with my hyper non-caffeinated morning energy, I was a petite 5’1 athlete who ran half-marathons just for fun and once squatted 250 pounds. Having myopia with astigmatism was really my only physical ailment.
Then there was the time I was a fresh 30 year-old, nearing the end of my year-long solo backpacking trip around the world, when with one step I all of the sudden couldn’t breathe.
Before that breathless moment in New Zealand, I had been climbing peaks in the Italian Dolomites, Austrian Alps, Swiss Alps, Auguille du Midi in Chamonix, France, and a 21-day trek to Annapurna in Nepal. I was in my eighth month of backpacking when I wrapped up my year in New Zealand enjoying a glorious three months of tramping until my travel visa ran out.
A few weeks into my New Zealand explorations, I booked a trip with New Zealand Adventure Safaris since they led off-the-beaten-track excursions. I was still backpacking solo and discovering the less-travelled paths always appealed to me. Because of my backpacking experience, my apparently impressive vegetarian stir-fry on a snowy mountaintop, and my availability, I was offered a job to join additional excursions in exchange for preparing meals and helping carry gear. In my opinion, it was a plush job and I scored with having free transportation, lodging, food, and hanging out with super fun and cute guides taking me to breathtaking, non-touristy sites, which to this day are in my top ten places I’ve ever visited in my life.
On what turned out to be my fifth and last excursion as an assistant guide, I was completely taken aback when hiking uphill, wearing a moderately heavy backpack (I was capable of carrying a much heavier pack), I felt short of breath. I found a log, took a seat, and told the guides and group I’d catch up. I had zero thought or concern about my health. My health history made me think I was invincible. I was maybe two miles from the top, and I struggled to breathe, starting and stopping for over TWO hours. The rest of the crew, including the slowest, oldest guests, took 30-60 minutes to reach the campsite.
Ian, one of the head guides and a good friend after months of backpacking and guiding together, hiked down to find me, surprised at my turtle pace. He believed me when I told him I’d be fine and catch up on my own. When I took so long he assumed I was probably taking photos again with my beloved Pentax SLR camera. He was shocked when he saw my slumped shoulders and short stride. My legs felt like lead. He regretted leaving me alone so long and I told him “I’m fine.” Back then, I really believed that. Now, I know, I wasn’t fine.
He took my pack which helped my breathing but, I still had to sit or lean against a tree or boulder after almost every five labored steps. I already had food and water. Ian ran back to camp to the get the first aid kit and brought me an inhaler. I puffed a few times, nothing. Just the jittery feeling from the albuterol. Good thought, but, I could still only take baby steps up that mountain. I kept thinking “I’m in the best shape of my life. I just backpacked in the Alps and Nepal, why the hell can’t I hike up this baby hill?” I got my first and only ever piggy-back ride up a mountain. I only had half a mile to go but, at my snail’s pace we knew I should get to camp to rest and arrive before dark.
Side note: I’ve lost track of my New Zealand friends and nothing came up when I googled their guiding service. Whereever you are, “Thank you, Ian.”
I made it to camp without alarming any of the guests. Only the guides were aware of my fatigue. I hydrated, snacked, took a rest, and felt well enough to make my last group dinner, and then last breakfast for New Zealand Adventure Safaris. In one trip I went from being an asset to a liability.
FROM ONE EXTREME TO ANOTHER.
After I finally returned home to the United States I felt better, even back to my energizer-bunny, peak-bagging self. At a routine physical I mentioned what happened in New Zealand and my doc wanted to test me for parasites, giardia, etc. The only thing that might have explained my shortness of breath was my low iron levels. I wasn’t anemic but, I was iron-deficient.
The fatigue came and went, then it started to stick around longer. At age 30, that was the beginning of feeling like I was living at the doctor’s office, getting poked, probed, tested, and feeling like doctors thought I was crazy because all of my results kept coming back normal. I would keep telling them: “But, something feels off, I am NOT a hypochondriac, I’ve never been sick all my life, and I just feel weird.” And that’s really how I felt, and the only way I could explain it, was “off” and “weird”, because my physical sensations didn’t fit any vocabulary in my frame of reference. “Tired” and “sick” didn’t fit the bill to describe what I was going through.
From typically seeing a doctor once a year to monthly visits, my life shifted from feeling invincible to feeling broken. I didn’t know who I was anymore, when I couldn’t physically do what I love, and I barely had the energy to socialize because focusing my thoughts or maintaining eye contact was such a huge energy drain.
My friendships were suffering because I was no longer feeding my relationships, and I was too embarrassed to share how I felt or to ask for help. I inherited the belief that sickness is a weakness, and weakness is a weakness, and I felt both sick and weak.
The earlier version of me who never drank coffee and annoyed my friends with my morning peppiness, was nowhere to be found. I discovered caffeine, and it was an evil curse because it 1) didn’t give me energy during the day and 2) it kept me awake at night.
I felt like my operating system was malfunctioning, and yet, somehow I fake-functioned, and got really good at saving my energy to wear masks resembling my old self, then make up excuses to skip socializing, to be alone and ashamed at home in my mysterious state of fatigue.
I was a highly-functional fatigued faker. On good days, I’d make appearances, on bad days I’d hide. This type of coping explains why people are so shocked when they find out someone has been sick or depressed or [fill in the blank], because some of us can be so good at only showing up when we’re fit for public consumption.
Note to self: If you haven’t heard from someone in awhile, check in on them. They might be struggling. If they say they’re “fine”, and your intuition senses otherwise, that might be a red flag. Invite yourself over with soup, ice cream, and a funny card. Insist you keep them company. Stay long enough to let them know you see them, care about them, even if they feel like they’re broken and falling apart, because we all feel like that sometimes. Book your next date with them in your calendar before you leave. The strongest, most independent people are sometimes the most isolated and lonely and, they often won’t ask for support.
YOGA AS A PRESCRIPTION.
This story takes a huge leap, 7 years later, to spare you all the medical tests and findings over the years, because those frustrating years of testing were mostly non-conclusive anyway. If I ever write a novel, I may share those details, but, for now, I’m ready to fast-forward to the yoga.
When I switched from seeing physicians to my naturopath, Dr. Moira Fitzpatrick from Bastyr University, I finally saw light at the end of the tunnel. Instead of more blood tests she asked me lots of questions and had me pee in a big plastic jug at home for a week to send out for comprehensive hormone panels. She muscle-tested me, she had me look at a box with different colored lights, she prescribed vitamins, minerals, and enzymes. She led me through my first cord-cutting meditation.
She handed me a prescription slip, and all it said was YOGA.
I started feeling better. I started sleeping again. I started smiling and hiking again. I eventually got pregnant. Dr. Moira Fitzpatrick took me down a non-conventional, holistic path to healing, and on a health and wellness journey I never imagined would become a cornerstone to becoming a yoga teacher and healer myself.