In the spring of 1989 I was laid off from my job as a computer programmer. The following fall, I had a series of viruses. I remember rain and dampness and feeling tired. By the next year I was feeling exhausted and wiped-out. I had low-grade cold symptoms. I was blessed to have a doctor who not only knew about, but also treated Chronic Fatigue Syndrome. She diagnosed me over the phone and asked that I come into the office so she could run tests.
By this time I had a job doing tech support. A big part of my job consisted of moving around and setting up PCs. I lasted ten, very difficult and exhausting months, doing this work. I had more sick days than work days. I was looking to get out of the computer field and planned to go back to school and to get my MSW.
A friend suggested I get acupuncture treatments to help with my fatigue. It was the first step in discovering a path that would forever change my life. Two years later I was back in school studying acupuncture. It took me five years to complete a three-year program. The illness waxed and waned. I would go through many months without any symptoms, only to have the illness return. I wanted to get better and was willing to try anything that I felt would do no serious damage to my body.
I tried subcutaneous shots of an herb called iscador, shots of gamma globulin, intravenous vitamin C, CoQ10, nitroglycerin, herbs, photooxidation, and nutritional supplements. The whole time I was getting weekly acupuncture treatments.
After about 8 years of living with the illness, I noticed that there was a seasonable component to it. I tended to do better during the summer. I invested in a 10,000 lux bright light – the kind used for seasonal affective disorder. On a weekend vacation in Rhode Island, when I was particularly sick and exhausted, I went to the local herbalist who recommended a supplement called NADH. This was the fall of 2000. I started sitting in front of the light for a half an hour every day and taking NADH when I woke up in the morning. The illness subsided and has never returned.
In the past ten years, I have earned a Master’s Degree in Acupuncture, met my soul mate and got married, moved to a new area, bought a house, changed jobs several times, found community… I work out about an hour a day and roller blade, bike, ski, kayak, and hike.
I hold out the possibility of complete recovery from CFS, tempered by the information that it took me nine years with excellent medical care and a good reason not to be ill – my desire to work as an acupuncturist.
The promise of recovery is important, but more important in my mind is the ability to learn to live with Chronic Fatigue Syndrome. Recovery is possible but uncertain. Living with the illness is an attainable goal. I am not suggesting the Chronic Fatigue Syndrome or any chronic illness is good or something to be sought after but what I am suggesting is that there are lessons and skills to be learned from the illness. These include:
• setting limits on your time and energy;
• resting when you need to rest;
• listening to your body – it is always speaking to you;
• asking for and accepting help;
• eating foods that sustain you;
• getting an appropriate amount of exercise;
• choosing the things in life that are important to you;
• setting simple, achievable goals; and
• using trial and error to determine which treatments improve your condition.
The most important lesson is to start living the life you want now. This doesn’t mean running a marathon, traveling to a Greek island or finding your dream job. It means being creative in bringing positive experiences and people into your life. It means finding joy in life. I love to cook and I love to ice-skate. When all I had the energy to do is lie on the couch, I would be watching PBS’s cooking shows and figure skating competitions. The tools that are so helpful in dealing with chronic illness are the same skills necessary in meeting with any of life’s challenges.
One of my favorite quotes is from the book Learning to Fall: The Blessings of an Imperfect Life by Philip Simmons:
“We have lived long enough to discover that life is both more and less than we hoped for. We’ve known Earth’s pleasures: sunlight on a freshly mowed lawn, leaves trembling with rain, a child’s laugh, the sight of a lover stepping from the bath. We’ve also seen marriages sour and careers crash, we’ve seen children lost to illness and accident. But beyond the dualities of feast and famine we’ve glimpsed something else: the blessings shaken out of an imperfect life like fruit from a blighted tree. We’ve known the dark woods, but also the moon. We are ready to embrace this third way, the way through loss to a wholeness, richness, and depth we had never before experienced.”
May you bring health and contentment, joy and happiness into your lives. May you learn from tragedy.
Know that there is hope.
Note from Bonnie:
“There is Power in telling one’s story”