From Doing to Being: My Journey to Healing
By Yvonne Bond
Note: Yvonne Bond is a CFIDS, FM and IBS patient from New Mexico. A graduate of the CFIDS/Fibromyalgia Self-Help course, Yvonne is retired on disability from a museum job.
I have had CFIDS, FM, and IBS for more than a decade. During most of that time, I lived with a dilemma: I thought I had to work, but trying to live a normal life made my condition worse. Three years ago, I stopped working. Since then I have built a new and better life for myself. I'd like to tell you my story, which I call my journey from doing to being.
A Life-Changing Sudden Onset
I experienced a sudden onset of symptoms. While riding my bike to work one day, I became so dizzy that I couldn't hold my head up. For the next six months, I was so sick that I couldn't walk more than a few steps at a time. However, when a dream job opened up, I applied, thinking I had a virus that would soon wear off. I did get the job, at an American Indian art museum, and for over twelve years I did my best, though I was often severely dizzy, weak, brain-fogged, and in severe pain. Eventually I was promoted to public relations director.
I kept pushing myself, thinking that if I slowed down, I was letting the illness win. Also, I felt that I needed to work to be a good model for my son. The treatments I tried helped enough to keep me going, but over the years I became progressively worse. When I reflected on my situation, I had two conflicting thoughts. One was: "I'm too sick to work." The other was: "How can I live without an income?"
The Turning Point
A turning point occurred about a year later, when I took the CFIDS & Fibromyalgia Self-Help course. When I looked at myself, I realized I was functioning at less than 50%, but living a life of 85% activity! That comparison showed me why I was getting worse.
I struggled with letting go of my job, which was my only source of income. Since I first got sick, I had been locked into the belief that somehow I could keep going. Then one day I woke up and said to myself: "I need to go on disability." I had finally realized and accepted that I was too sick to work, not even one day a week. From that moment on, I concentrated all my remaining strength on leaving work. I went to doctors who could document my illness while I still had medical insurance.
Using the Disability Workbook for Social Security Applicants available from the CFIDS Association of America, I began working on my Social Security Disability application. I had the doctors' offices send me all my records. A friend with CFIDS also gave me helpful information. I had enough savings to squeak by for about a year.
At first it was difficult to get used to spending less money. But gradually, as I let go of things-cable TV, magazine subscriptions-I found I didn't miss them. Internet support groups from this program provided me with regular opportunities to set targets and to "be my own scientist." Logging, pre-emptive resting, pacing, and saying no became woven into my routine. So I survived the year and, thankfully, had received approval of my disability application.
Creating a New Life
I have made many adjustments to create a new life for myself. First, I decided that my new life would be centered at home. I started hosting small teacher-led meditation retreats. Friends decided to put out a donation basket for expenses. I asked others for help with physical activities that tired me. When people come to help, I put out soup and sandwiches for them. The big room has become Open Heart Zendo, a meditation and meeting space.
My friends and neighbors in the small town where I live provide many kinds of support, such as rides to medical visits when I am too sick to drive. I am finding ways of connecting with others that don't take so much physical energy, that can take place here at my home base on a tree-lined residential street. In the process, I have learned to receive-something that is not always easy.
Open Heart Zendo is a place to relax, talk, sing, meditate, and have fun. It's really rooted in our neighborhood and in our town. Friendships are flourishing and I have a feeling of connection. One evening a month a poetry group meets, and a singing class is held every Tuesday. I found that I love singing, and learning music is good exercise for my foggy brain. Getting an extra-long afternoon rest (one and a half to three hours lying down) is essential for me before evening activities. I've also found it helps not to schedule activities on two evenings in a row.
A favorable aspect of staying home most of the time is that there is ample creative time. I'm nurtured by silence and by getting back into the natural rhythms of sunrise and sunset, activity and rest. Most days start with two hours of meditation, inspirational audiotapes and reading, a long warm bath, and stretching. Everything else can usually wait until after 11 or 11:30 a.m.
Dividing physical tasks into light, medium, and heavy has enabled me to do things I didn't think I could do. For example, I have found that if I plan my time carefully and switch among tasks of different types, I can have a garden. My time in the garden might include five to 15 minutes of heavy work like digging, 15 minutes of light activity like taking out and putting away tools, and 15 minutes of a medium-difficult task like raking. I sit down in the sun in between tasks so I can just enjoy being outdoors.
With help from the Small Business Development Center, I started a home tape transcribing business a year ago. It's added a couple of hundred dollars a month-sometimes more-to my shoestring finances. Computer work tires me easily, so I have to pace myself during my two hours of daily work. I may get up to have a snack or play with the cat, and I take brief rests in which I lie down with my eyes closed. To keep my stress level low, I make sure my clients know that I don't do pressured work.
Benefits of My New Life
How am I doing after three years of being at home? My stress level is much lower. The difficult people are out of my life. My activity level is manageable. My moods are better. Most important to me, my spiritual and creative life has really blossomed. I've learned to conserve energy and ask for help. Sometimes, though, I still overdo it (or eat the wrong food, et cetera) and pay the price, but usually I have chosen to do this.
I now believe that it would have been better to find an alternative to full-time work much sooner than I did. When I left work, I was 20 - 25 on the self-help program's Rating Scale, and felt really horrible all the time. I'm now 30 - 35 with occasional downturns. I still have flares and remissions, but I don't push and crash any more. I feel better. I know how to say no, and how to stop before I'm overtired.
In my new life, I focus on doing things that I love and that also bring happiness to others. I also base myself in being, not doing. That means resting, meditating, avoiding rushing and stress, accepting myself as I am. It means having lots of quiet time, down time, time to reflect, time to rest and renew. "As soon as patients orient toward ‘being' and healing, interestingly, they are far better able to ‘do,' and I think far better able to heal and recover," says Dr. Paul Cheney, a leading CFIDS expert. That's pretty much what has happened with me.
I'm thankful for the love, patience, and inner strength that I've learned from living with a chronic illness. The path of responding to a sick body in a way that is wholesome continues taking me deeper into creativity, peace, and happiness.