Learning to Live with Overwhelming Exhaustion Takes a lot of Effort
By: Mikaela Casas, Grace Rogers, Mary Hart
It is just before noon on a Wednesday morning. The sun is bright, high in the sky and there are no clouds in sight. You get the feeling that it is going to be a very hot day. For most people in Texas, it is just a typical summer’s day, but for someone with chronic fatigue, this spells trouble. Even in mild weather, it is difficult to stave off the exhaustion and fatigue that comes in waves. But on a hot day in August, the struggle is just beginning.
As we walk into the Northwest YMCA, we are greeted by a welcome blast of air conditioning and smiling faces as we check in to attend a cancer rehab class. Ashely Gordon, a student at UT, who is recovering from breast cancer, leads the way into the exercise room.
The room is brightly lit, with sun streaming through the windows and the members of the class are getting into position to begin warm-up exercises. The class is made up of about twenty participants and throughout the room, next to each person, are the things they will need for today’s exercises.
A chair. A bottle of water. Elastic bands for stretching. Hand-held weights. I immediately get the feeling that everyone here is serious, not playing around and determined to get well- at any cost.
Most members of the class are wearing tennis or running shoes, and almost everyone is in some sort of loose-fitting t-shirt, often with a recognizable cancer charity emblazoned on the back. Some are in leggings, some in shorts.
There are a few men in the class, but most are women, and most are over middle-age. Ashely is the youngest person in the group, dressed in black leggings, a light pink t-shirt, with the words, “Ride or Die Chick” printed in white on the back, and is barefoot. She takes her place at the front, near the instructor, Evelyn and is ready to begin. In fact, everyone seems not only ready to begin class, but determined to finish and finish well.
The class begins with warm-up exercises that consist of raising your arms and legs in tandem. Then, bringing the arms up over the head, parallel to your body, then back down. After that come more exercises, with twenty iterations on each arm. It’s getting intense. Watching everyone work through the often painful and difficult exercises, I’m feeling tired. I’m feeling achy. And I’m not even participating.
By the middle of the class, I’m crying. I’m having a hard time seeing my notes. I’m overcome with inspiration for the people in this room. Some who have battled cancer and won, and some who are still fighting that battle. No one is complaining. No one is sad. No one is crying.
I’m imagining myself doing these exercises. It reminds me of physical therapy exercises I used to do. Looking around the class, I realize it would be very difficult for me to do the exercises that they are doing. I haven’t worked out in more than a year. I feel like I should be doing more to improve my health.
I have chronic fatigue as well. I was diagnosed towards the beginning of my college career, and have struggled to continue with school while also maintaining my health. Going back to school after taking a break for health reasons seemed daunting. Graduation seemed unattainable.
Ashely has a similar story.
Ashely began her college career when she was 18 and has struggled with health issues since she was 13 years old. When her father died, it was very difficult for her to cope and she had to move home. When she returned to UT, she began again, with a new major- sociology, and began focusing on Spanish as well.
In June 2014, Ashely was diagnosed with breast cancer and began treatment shortly after, in the fall. After rigorous radiation treatment, she began to have bouts of overwhelming fatigue, which her oncology doctors mentioned she might develop as a result of radiation.
It wasn’t until after radiation treatment that she realized the fatigue was markedly worse than during treatment and was continuing months after she was finished. She talked to her doctors and they diagnosed her with chronic fatigue last fall.
“It comes in waves,” says Ashely. “Depending on the day. And also the weather plays a huge factor in how fatigued I feel. Two weeks ago, I had an episode where I stayed in the house the whole week.”
Extreme heat, like that of the day we accompanied Ashely to rehab, can pose a huge problem for someone struggling with chronic fatigue.
The heat already makes a healthy person feel tired, but can make someone with CFS struggle to the point of total exhaustion, requiring the person to need to lie down immediately for rest. However, even after long periods of sleep, one does not feel completely rested.
Caroline Burdulis of Big Sky Acupuncture, knows this feeling well. She was diagnosed with chronic fatigue while in college at Stanford University. At that time she was cycling over 100 miles a week, all while studying for a degree in medicine. She began to feel tired, achy and fatigued, and within a few months, “I couldn’t walk a block down the street without having to take a nap for two to three hours,” says Burdulis.
To address her health issues, she began to study Eastern medicine. Through her study and practice of modalities including acupuncture, understanding the importance of the body’s yin and yang energy and the importance of a structured diet, she has recovered spectacularly well.
Burdulis, with her husband, now leads meet-up groups in which she imparts her knowledge of Chronic Fatigue (CFS) and Fibromyalgia to men and women who are struggling with these illnesses and looking for answers and help.
It is apparent, with a multitude of illnesses, how vital support is to the person with a health issue. Friends and family are the usual ones people rely on, but the support of others going through the same thing you’re experiencing is incomparable.
You get that feeling in the rehab class at the YMCA. Evelyn, the instructor of the class, is constantly encouraging but also quite serious and focused, never condescending or pandering. “Keep knees nice and soft. Here we go!” Evelyn says with a smile. “Everybody smile! This is fun, right?”
The men and women in the room sometimes respond to Evelyn’s instructions with gentle sarcasm, “Oh yeah, this is great!” but it is all said with a smile and no one complains, even when Evelyn accidentally messes up the count of the reps, unintentionally adding more. Everyone continues through the exercise regardless and powers through to the end of class.
At the end of class, Ashely takes a long breath and exhales slowly. She wipes her brow and collects her things. I ask her how she feels and she responds with a smile, “I feel energized. I got a rush of adrenaline during class that helped a lot. I’m very happy I got to come today.”
Ashely is an inspiration to anyone with or without health issues, with or without breast cancer and with or without Chronic Fatigue. As someone who struggles with CFS myself, I am inspired by Ashely’s story, her journey, and her epic strength. Through knowing her and learning her story, I realize even more that I’m not alone and am inspired to continue moving forward to better health.