My journey with chronic fatigue syndrome continued and continues. I wrote of it again in This Path We Share: Reflecting on 60 Years of Marriage. This small excerpt shows some of the ways we coped:
"We eventually learned that while some patients recovered from chronic fatigue syndrome, many did not. However, I was determined not to lose my real life to a disease that, even though a mystery to medical science, was not usually fatal.
"From 1989 onward, Les and I struggled to make that happen. CFS shifted our roles. Doing heavy work made me worse, so Les took over as many chores as he could. We learned to stay at home in the evening. We started going to bed earlier than we preferred. If I could order from a catalogue, I skipped shopping. Friends slowly disappeared because I did not have enough energy to make and keep luncheon dates or carry on a converation when I did go. My family and friends tired of asking how I felt and hearing 'exhausted,' so I started saying, 'Fine.'
"I increasingly turned to Les for strength and understanding. Only he could validate my journey with CFS; no one else knew or understood how difficult it was for both of us.
"Sometimes I dreamed about CFS. I would be visiting relatives or attending a party and feel too exhausted to lift my arms or legs; I felt as if I were disappearing into nothingness. The dream always frightened me to consciousness, but it was the one nightmare from which I could not awake.
"The rivers of entropy flowed on. And we knew that we could not stay in the Garden of Eden, no matter how hard we tried."
Most of the time, I accept my limitations. After all, I have had twenty-four years to adjust. It is part of the fabric of my life. CFS and my breast cancer a year later changed everything. And nothing.
During all those years since April 6, 1989, I had two separate mastectomies, gave up teaching piano, wrote three books, traveled by car over 400,000 miles (without homicide or divorce?!) to speak more than 600 times, spent precious never-to-be-forgotten hours with my beloved husband and our four children and their families.
But I know that there are many CFS patients who cannot live their lives, no matter how much accommodation they may try to do. I have been extremely lucky and I feel unworthy of the good fortune I have had. I am trying to give back as much as I can out of gratitude.
This thread to be completed tomorrow with a poem…