When I explored ways of alleviating my initial symptoms of chronic fatigue, low back pain and grief 20 years ago (see post 1 in my Chronic Fatigue Story series) it lead me to a path I hadn’t known existed. In looking back I can see how each new step was a testing of the waters as I looked for direction. As I searched for MY direction. And finding work life balance. Each step in my process of healing felt new and unexpected while somehow feeling as old as the earth. I experienced a great deal of fear. I had significant doubts pretty much all along the way. I secretly worried that there was something inherently wrong with me to be feeling so much grief even as I was working with wonderful colleagues in a job I had dreamed of.
What I came to see over time was that we each have our own paths. And that these paths are not only unique, they don’t always look like what we expect them to. Or how we plan them out.
I’ve gradually been learning that life is really just a series of steps – sometimes baby steps, sometimes giant leaps – and that the obstacles act like sign posts. They give us the option to make adjustments along the way. I’ve been slow to recognize that these bumps in the road weren’t mistakes – they were just the normal course corrections we make as part of living life.
With the support of a course called Opening to Spirit I was reminded that we have access to the information we need through intuition, yearnings and feelings. And that there is a loving intelligence – both inside and out – that speaks to us, whether through synchrony and coincidence, conversations with friends or strangers, through time spent in quiet or in Nature, and more. Part of our homework in this class was to look for and pay attention to these clues, talk about it with a classmate during the week, and stay curious. It gave me permission to believe again, as I had as a child, that there is more than what we see. And that it offers us hope.
Another part of our class work was to meditate. Each time I sat I landed in a place of profound exhaustion. While I’d heard that meditation was supposed to be recharging and refreshing my teacher suggested that some part of me was very, very tired. It wasn’t clear what that meant and so I was encouraged to wait, watch and stay open.
In my work with Kevin I began to listen to my body by attuning to sensations and images while holding curiosity for emotions and impulses. I felt supported as I tested out this process of inquiry and new orientation to my life. I also started to behave in ways that were unfamiliar.
The Emergence of No
As I began to experience what it was like to feel heard a shift slowly took place. At three different times during the year I found myself saying “no” in the most ungraceful and uncharacteristic ways imaginable. It taught me that “no” had not been a part of my vocabulary in the past. That I had never really learned that saying no was okay. That No is an Important Tool to have in one’s backpack. It was a bit of a messy process as I had to learn what “no” felt like. And how to express it. Each time it came out it seemed to get a little clearer. And a little closer to the bone. It turned out to be a critical part of finding work life balance.
The First No
The first time my “no” emerged was right before seeing a patient. I was reviewing her chart when I noticed that a form I had developed to make it easier to track the enormous amounts of data needed for following women during pregnancy was missing. It was one of those moments when you have a rage response so huge – so out of proportion – that you wonder if you are coming unglued. All the pent up frustration I hadn’t quite realized I was holding back erupted. I yelled at the nurse who was helping me that day. I felt so overwhelmed that I then cried on her shoulder. The piece of paper turned out to be buried deep in the chart. And so I pulled it together and went in to see my patient.
When I explored the meaning of such an event with Kevin he drew me a picture. “The surface can look quite calm,” he said, “but when an experience like this happens it’s because there is a volcano sitting beneath that surface.”
This experience helped me catch a glimpse of the role of “no.”
Saying no is an act of self-care. It’s about CARING about yourself, your feelings, your thoughts and impulses enough to listen. And if need be, to act. It’s there to help you take care of your most basic needs – and not just the needs of others. Needs such as down time. Needs for eating and sleeping, and for rest and play. Things that are so basic you’d never even question them if you were taking care of a friend – or of a child. “No” helps us set and hold boundaries so that we can be loving and compassionate towards ourselves. It is a game changer.
The Second No
The second time a no emerged was when I cancelled a weekend skiing workshop at the very hour it was supposed to begin. I’d been feeling subtle resistance but only figured out what it meant when, after an entire day of delay and avoidance with gear strewn all over my living room, I’d been unable to force myself to pack up and leave the house. I didn’t think about whether fatigue had any influence on my decisions or behaviors at the time but I was so tired that I ended up spending my weekend resting and reading in bed.
What has taken me a remarkably long time to recognize is that saying no is an act of self-love. It requires that I trust my body enough to listen to what it might be trying to say in the only language it knows – through images, impulses and sensations. Perhaps through fatigue. When one is tired a healthy response is to REST. To slow down. To stop for a while.
Saying no requires that we believe in ourselves. That we trust our guts. Value our bodies. It is saying to ourselves, “I matter.” I deserve care and compassion.
It turns out that saying no to overwork or to pushing beyond our limits or to doing it alone are all a way of saying yes. Yes to who we are. Yes to what we need. Yes to the fact that we, too, are worthy of love.
No Number 3
When I withdrew from a work-related conference several months later – again at the very last minute – something new happened. In contrast to my imagined fears, when I called my boss, Dan, to tell him I’d just cancelled my flight in the hour I was supposed to take off, he acknowledged the level of distress I was in. To my further surprise, he told me how much he appreciated me. And then offered to do whatever he could to support me in what I needed. I started out by flying my tired self to the Outer Banks of North Carolina and resting on the beach for a week.
As I lay on my belly one day, arms outstretched and taking in the warmth of the sand, I felt the support of the earth beneath me. I felt as though I was being held in an effortless way. Being embraced. And that all I had to do was to rest and let go. I found myself hugging the earth back.
Saying no created the opening I needed to experience the presence of support that was right there, waiting for me with open arms. It allowed me to stop pushing long enough to slow down a little. And take in the sense that I was not alone. And that I did not have to do it all alone.
I’ll share more in a “Details of No” post in the future, including how difficulty saying no – and feeling that we have to be strong and not need anyone – comes from something we learn rather than from some innate flaw. It also means that we have the power to unlearn it.
No Creates Space For Yes
I started listening better after that. And practicing my “no” a little more directly.
It seemed as though once I began to recognize and hear my “noes,” my world started hearing them better too.
I revisited my desire to slow down and find work life balance. Even though I’d mentioned it to Dan and my colleagues more than once in the previous year, this time everyone got how important it was and we found a way to make it work.
After more than a year of searching I found my first home.
I decreased to working part-time the week I moved in.
It was heaven.
I was extra tired the weekend I moved but I had just completed a particularly intensive rotation with my residents and had been packing for weeks. When I developed a sore throat and achy eyes on moving day I thought I was getting a cold. But the symptoms resolved within a couple of days instead of worsening or lasting a week as they usually did when I got sick. I didn’t know then that a sore throat was one of the criteria in the diagnosis of chronic fatigue. And since resting for a few hours at a time over the weekend helped me recover enough to keep going, I felt encouraged since recovering through rest was not a given when my fatigue attacks occurred.
My low back pain was a little better the week before moving as well.
I wondered if I might be on the mend as I created more room for myself and in my life.
Finding Work Life Balance and Joy
Once in my new house with my lighter scheduled I started resting. I enjoyed my down time even more than I’d expected to.
I planted my first garden.
I got caught up at work and started feeling more centered and organized in my home life.
I cooked more meals to bring to work. Went strawberry picking as I’d done in my childhood and made pies and jam to store in the freezer.
Finding the work life balance I had so yearned for took a weight off my chest. I started to settle into a new and more satisfying routine. To experience moments of joy and satisfaction. Including a sense of the privilege I felt to have such a special relationship with the people who were my patients.
I’ll share more about what I most appreciated in these relationships, along with the discoveries that unfolded over the next year, in an upcoming post.
In addition to the detailed posts below, I’ve summarized my story in a 2018 post. It explains how the science I discovered on how subtle adverse life events shape our nervous systems and long term health help make sense of my symptoms and are helping me recover. I’ve since also written a post summarizing research that supports these views on ME/CFS as a metabolic state of hibernation.
I’ve now summarized my experience with chronic fatigue in one post and how understanding trauma helped me make sense of my symptoms and begin to heal. It’s how I came to an entirely new way of thinking about chronic illness.