I jogged. I did aerobics. I taught actors how to be strong. I was part dance teacher, part athletics coach. I was an Amazon woman.
After teaching four classes while rehearsing a play during all the rest of my time, I ended up vomiting in the dressing room on opening night. I spent the following summer lying around and reading. Then I developed constant headaches. People who develop fibromyalgia or chronic fatigue often do so after a bad virus.
My doctor diagnosed it and gave me pills (low-dose antidepressants). I was lucky to be diagnosed so quickly—many people spend years trying to figure out why they hurt. But the doctor didn’t give me any other information about dealing with this thing. At least the pills made the headaches go away.
I’m cured! I thought and stopped taking the pills.
The headaches came back, along with sore muscles and fatigue. I went back on the pills. They got rid of the headaches, but the sore muscles and fatigue remained.
I couldn’t possibly be sick. I was a professor. I was a high achiever. I had always danced and jogged and tumbled. I even ran a mime company (okay, it was the sixties!). These tired and headachy fits often made me temperamental and cranky, because high achieving became so hard. Maybe that’s why I didn’t get tenure.
According to my mother and grandmother, I have always been temperamental. Now, when I have an exhausted and achy fit, I still get furious.
I did go to a therapist for the depression that came with losing the ability to teach the work that I’d spent years learning. That helped enough so that I got a series of desk jobs. No longer did I jog or work out. I didn’t even take walks. I spent a lot of time sitting on the couch. When depressed or unhappy, I’ve always said that I would never commit suicide, I’d just stay in bed and not get up. Ever.
Then I discovered that simply walking half a mile exhausted me. Me, the Amazon woman. Something had to change.
I tried many therapies. Physical therapy—until the therapist got tired of chasing endless muscle knots. Massage. Acupuncture. And a panoply of vitamins. The vitamins kind of helped, and I still take them. But physical therapy, massage, and acupuncture didn’t. The depression fits added themselves to the fatigue fits.
My superpower is studying. I learn information easily. I’m good at taking tests. But I was flunking this test.
Having a chronic invisible illness is depressing. Other people don’t notice your illness, or don’t believe it. Worse, I don’t always believe it myself. Symptoms appear and disappear. In the disappearance times, I still forget that I have fibromyalgia. Or chronic fatigue. Or a little of both.
Then my husband bought me a bicycle. When I first moved here to Ithaca, NY, I had sold my bicycle, because Ithaca is full of extremely steep hills. But now I practiced on nice flat pathways. Pretty soon, I tried a gently rolling country road. The new bike had more gears than I could count, so on anything resembling a hill, I could shift down and almost make it. Then I could make it. Then I could make it in a higher gear, and ride for a longer time. I gave up my couch potato habits for my bicycle.
Not everyone with this fibromyalgia/chronic fatigue thing is so lucky. Two friends who have it spend most of their time in bed. I have no idea why the bicycle changed things for me. It’s what I call “sheer dumb luck.”
However, I actually like to exercise. Dancing, jogging, yoga, tai chi, the gym, I like them all. So flying on a bicycle is good mental, as well as physical, therapy for me.
After biking, however, I discovered that I had to stretch and then sit on a heating pad for an hour or two. It’s “post-exertional malaise,” and it’s a hallmark of fibromyalgia/chronic fatigue. For some, it happens after walking a short block. For me, when I overdo on a good day, I’m likely to be exhausted the next day. You’d think I’d learn from this—but I still haven’t.
More luck: all those actor skills came to my rescue. I know how to stretch safely. I know several techniques for releasing muscle knots. (The best one is Feldenkrais work. If you, too, have sore or exhausted muscles, ask me about it.)
In those years of sitting on my butt, I’d read all about my chronic invisible illness. Books on the subject abound. In 2021 alone, Google tells me, there were 15 new books on fibromyalgia, and 11 on chronic fatigue. My similarly large collection dates from the 1990s. Although physicians have learned a lot since my 1988 diagnosis (see Daniel Clauw on YouTube), mysteries remain. For example, no one knows when it’s fibromyalgia and when it’s chronic fatigue. The first has more aches; the second has more fatigue, but both can have both. My own aches have subsided into things I can call age-related, but the fits of chronic fatigue still happen.
It’s worse in the morning. Now that I’m retired, I don’t schedule anything before 11 a.m. Not that I was ever a morning person, even when I had to teach eight a.m. classes.
In the United States, about 26 million people have an invisible disability, like fibromyalgia. We don’t use wheelchairs. We are not always housebound. We look perfectly fine. Talking with friends who have the same diagnosis, I learned that not only do symptoms come and go, they are different for everyone. No wonder the physicians are baffled.
Then there’s the notion that we all must “get healthy.” Health is seen as the usual, the norm, the way things should be. When I was an Amazon, I believed that.
But everyone has something—a chronic illness, a more limited illness, mental problems, social isolation. Or smaller things, such as coping with small children and catching everything they get. So “health” is what we are all going toward, or away from, at any given moment. Researchers have defined health as the ability of a body to adapt to new threats and infirmities. That is, health is a continuum. Some days you are invincible. Other days you are in bed, adapting.
Those of us whose chronic illness comes later in life are often high achievers. Learning to be a lower achiever comes hard. Chronic illness, arriving after 30 years of achievement, brings chronic grief. Which led me to those chronic fits of depression.
The bicycling husband was alternately very patient and very frustrated with these fits. And with my tendency to stay on the couch. Or to make everything about my illness. Another piece of luck—we’ve mostly worked through that.
I’m more than my illness. I re-learn that daily.
But managing the depression is still with me. Recently, I found myself re-reading Anatomy of the Spirit, by Caroline Myss. She often writes about forgiveness. So I forgave my sore right leg. Then I forgave my bouts of tiredness. Most important, I forgave my low achiever self. Finally, I began to forgive those people in my life who I felt had hurt or betrayed me. We all have them. Many of us, like me, remember them for too long.
All that sounds like I’m done with forgiving. Nope. I still struggle to fully understand that my value does not come from how hard I work or from a brilliant career.
A friend created a local group for people with chronic illness. We get together about once a month. Each person, in turn, tells what their life has been like for the last month. Then we share ideas—new medications, new therapies, and ways to help others. That’s where I learned about low-dose naltrexone, which improved me enough, so I can do more without needing to curl up on that heating pad.
Coping with chronic fatigue and fibromyalgia, I have learned a lot about myself. I’m much better at gratitude—for the people I love, and for my luck in having health insurance, and having enough resources so that I didn’t have to keep a job with a passive/aggressive boss that was hurting me physically and mentally.
Finally, I now pay attention to full moons, woodpeckers on the suet, and the changing seasons.
END
Judith Pratt’s (she/her) varied experiences—actor, director, professor, fundraiser, and freelance writer—inspire her novels, stories, and plays. She began as a playwright. Then a story appeared that would not fit on a stage, so she wrote a novel and then two more. Published: The Dry Country, Siljeea Magic, and The Skill, all on Amazon. Short stories and essays followed soon after. They appear online and in print, including in Last Stanza, The Gateway Review, Fifth Di Magazine, Fiction Junkies, Hags Fire, Synkroniciti Magazine, and Write It Sideways. In 2019, her play Maize was selected for the Louisiana State University SciArts Prize. Her play Losing It was published in Best Ten-Minute Plays of 2020.
Facebook: @judith.pratt.7
Twitter: @JudithPratt