How I Created a Good Life with Fibromyalgia
December 25, 2002
By Joan Buchman
This article is reprinted with permission of the author and the CFIDS/Fibromyalgia Self-Help Program: www.cfidsselfhelp.org.
About the author: Joan Buchman, a fibromyalgia patient from San Jose, California, is a support group leader and moderator for the CFIDS/Fibromyalgia Self-Help Program.
I have experienced many struggles in my eleven and a half years with fibromyalgia, but I have come to believe it is possible to live a happy, fulfilling life with chronic illness. It takes discipline, determination, patience, the willingness to make lifestyle changes and a large dose of attitude adjustment, but I can honestly say that I am happier today than I was pre-FMS. It is a different life than I imagined I would have at this point. But it is a good life; I am at peace with my illness.
Learning My Physical Limitations
Now 57, I have had fibromyalgia since March 1991. My symptoms began with muscle pain in my legs and hips. Then I developed a sleep problem with resulting debilitating fatigue. Getting a diagnosis 18 months after my symptoms began brought relief, but also shock: How was I going to live for the rest of my life with this debilitating chronic illness?
During the early years, I went through a kind of death, the loss of the person I was before FMS. I began with denial. Early on, even after reading a lot about FMS, I continued my lifestyle of working, doing my share of the household chores, etc. Since I had read that aerobic exercise was recommended for FMS, I started getting up at 4:30 am, so I could go walking before work. Of course, losing sleep made my fatigue even worse. I kept up this routine for five months before admitting that this strategy wasn’t working. I quit my job, rested quite a bit and started exercising moderately.
I began looking for answers by learning as much as I could about FMS through books, magazine articles, health libraries, and a local FMS support group. I saw specialists in internal medicine, chiropractic, orthopedics, and rheumatology. With their guidance, I spent six years trying many different treatments, both medical and complementary.
I experienced temporary pain relief from acupuncture and massage therapy; nothing from two epidural injections. Muscle, physical and massage therapy, tai chi, walking, aqua fitness and mild strength training all helped with body flexibility and muscle strength. Biofeedback taught me to relax, resulting in the most pain relief I had experienced so far.
To deal with the anger, despair and depression I was experiencing, I started therapy, which helped me come to terms with all the negative emotions I was having along with my FMS.
By 1997, my pain was moderate compared its level when I was first ill, but I hoped for more. Seeking to be pain free, I decided to explore mind/body medicine. I read books about the mind/body connection, relaxation and meditation. I regularly listened to meditation tapes by Emmett Miller, MD, Bernie Siegel, MD and others well known in this field. I went to a trained hypnotist, which was very helpful. He made tapes of our sessions, which I continued to use after discontinuing treatment. By practicing the relaxation and meditation techniques, I lessened my pain further. Also, I began to relax and move more slowly in my everyday activities. The physical tension I had carried for so long was decreasing, allowing my body to relax.
At the same time, I was making lifestyle adjustments that also helped me control symptoms. I exercised regularly. I reduced my activity levels to use my available energy more wisely. I re-evaluated all my activities, cutting back or eliminating some, continuing others. I incorporated resting into my daily schedule. I also learned that stress aggravates my physical symptoms. I identified stressors and devised ways to reduce or eliminate them.
By 1998 I had attained what I call conditional acceptance. It took me seven years to reach this stage. I found a good balance of activity, rest, exercise. I learned stress avoidance and stress reduction techniques. I evaluated my life in all areas and chose exercise, activities, relationships, and stress reduction techniques that supported my feeling as well as possible.
Based on my experience of having symptom reduction, rather than symptom erasure, I decided to focus on a coping strategy. I stopped treatments that did not erase my symptoms, which included acupuncture, medications, chiropractic. This was a major change in my approach to living with FMS. I gave up on the miracle cure, deciding instead to focus on controlling symptoms and living the best life possible with a chronic illness.
Reframing My Thoughts
It became very clear that a positive attitude was crucial if I was going to attain acceptance and peace with my illness and my life. I finally learned that how I perceive myself and my chronic illness can greatly affect my quality of life. One way was by reframing my thoughts. Reframing is a term used in psychology to mean learning to look at something from a new perspective. Taking a situation, and looking at it in a different way, can help one accept and embrace that situation and give it a positive spin.
I taught myself this skill. For example, I took the idea "I am so tired today. I don’t think I will ever feel energetic again" and reframed it as "I am tired today. But from my past experience with fatigue, I know that I will feel good again, after giving my body the rest it needs." The thought, "My pain is awful and it’s never going to get better" became "Yes, the pain is strong today, but the last time it was this bad, it did get better."
Inspiration From Others
I gained a great deal of inspiration from my sister-in-law, who died of cancer at age 50. She lived with us the last five and one-half months of her life. She did not spend her time wishing for different circumstances. She spent it making peace with her situation. She reached out to many people who had been part of her life. In return she experienced a remarkable outpouring of love. A wonderful example of someone who found peace of mind, she embodied Bernie Siegel’s idea about love and healing: "Illness and death are not signs of failure; what is a failure is not living. Our goal is learning to live - joyously and lovingly."
Self-pity is a common experience with chronic illness. I took as a model of how to respond to it the ideas of actor/director Christopher Reeve, who was paralyzed from the shoulders down in a riding accident in 1995. He wrote that he learned to replace saying, "What life do I have?" with "What life can I build?" I, too, realized that I could build a life that was happy and fulfilling if I set my mind to it.
I decided I needed to develop a hobby that could provide diversion from the health issues that were my primary focus. I rekindled a lifelong interest in arts and crafts and discovered various activities that I could do and still honor my limitations. I took drawing and calligraphy classes. I became very interested in rubber stamping and now make cards and other items to give and share with others.
I also learned that helping others with FMS reinforced my health routine while assisting others on this journey. I am a leader in my local FMS Support Group and also serve as a moderator for the CFIDS/Fibromyalgia Self-Help course.
The Power of the Gratitude Journal
By the end of 1998, I had achieved a level of acceptance that allowed me to have a reasonably happy life with FMS. Then I found something that brought me to a higher level of acceptance and in the process transformed my life: keeping a daily gratitude journal. This is a simple exercise that anyone can do, writing each day five things to be grateful for. At first there were days when I struggled to find five things for which I was grateful. But the exercise had profound effects as I continued.
At first I expressed appreciation for people in my life and my life as it was. That led to feelings of gratitude for the lessons I had been learning about myself because of my illness. I learned that moving as fast as I could, doing as much as possible, was not making me happy. I was not taking any time to nurture my physical, mental or emotional needs. As time went on, I came to believe that gratitude means appreciating what you have and making the most from that.
Gratitude is not about "looking at the bright side" or denying the realities of life. Gratitude goes much deeper than that. It’s about learning from a situation, taking the good to help deal with other challenges in the future. It’s about finding out that you have more power over your life than you previously imagined. You can stop being a victim of your circumstances and reach out to the joy in living. If you open your heart to the good in your life, gratitude becomes as much a part of your life as breathing.
In summary, focusing on the good in my life and putting these thoughts on paper each day for a year allowed me to see that I had much to be grateful for. And that I could have a good life with FMS. [For more Joan’s experience with gratitude, see her article "The Healing Power of Gratitude." - Editor]
Making Peace For The Long Term
From all the physical and mental modalities I tried over the years, I have developed a program of exercise, activity and rest that helps me feel as well as possible, giving me the best quality of life possible. I do some type of exercise five days a week. I do activities that take no more than three hours at a time. I build formal resting into my day. My pain levels are stable, my sleep is better, and consequently my fatigue is under control.
Reframing my thoughts, finding inspiration from others’ situations and writing the gratitude journal have helped me learn to focus on what I have. I also realized that I can focus on viable alternatives to activities I can no longer do in the same way as before. Even though I can’t do as much gardening now, I have learned how to simplify tasks, have found other ways of doing things, made my yard more low maintenance, found tools to help me, and limited myself to working very short periods of time.
I learned that I can find joy in everyday things - walking and seeing flowers and birds; the beauty of nature; spending time with family and friends, just enjoying their company, not necessarily "doing" something.
I also realized that I don’t have to do it all. I can still enjoy traveling, even if I go at a slower pace. When possible, my husband and I arrange to stay in one place for several days so I don’t have to pack up and move so often. I build resting time into the itinerary and don’t try to see everything, as that’s not possible even for a normal person!
Thanks to Dr. Richard Carlson’s book Don’t Sweat The Small Stuff!, I learned to lighten up and not take everything so seriously. He identifies 100 simple ways to keep the little things from taking over your life. A few of my favorites: Make Peace with Imperfection; Remind Yourself that When You Die, Your "In Basket" Won’t Be Empty; Think of What You Have Instead of What You Want.
Benefits of Acceptance
I have learned that there are many benefits of acceptance of my FMS. I take better care of myself. My health is a top priority. When I feel better, everything in my life works better. My life becomes more predictable, less of a roller coaster ride. With proper exercise, rest, and activity pacing, I am giving my body the gift of healing. My body relaxes when I’m not fighting with it, and I feel better.
I also have more confidence in myself and in dealing with people. By accepting my illness, I feel less of a need to explain, rationalize, and fret over what others think.
A Major Test Of My Strategy
I experienced a major test of my approach in June of this year when I was faced with major abdominal surgery. I felt the full physical impact of the surgery the first few days after. I had a lot of pain, which was moderated by medication. Food tasted terrible, due to the anesthetic drugs that were used. The hospital environment was loud and my roommate had many visitors. I was extremely weak, but couldn’t walk because of nausea from the drugs. Six days after the surgery, I went home to an environment much more conducive to healing. While convalescing at home, I was able to bring up my reframing technique and begin the process of seeing the surgery in less of a negative light. As I did that, my recovery-anxiety decreased dramatically. I think this was a pivotal point in my recovery.
I gained strength quickly, which surprised both me and my doctors. I did not have a major FMS relapse after the surgery. Nor did I have the emotional upheaval I would have expected from having a serious medical problem and recognizing that there were risks with surgery. My rheumatologist credits my remarkable recovery to my positive attitude toward life and FMS.
My experiences showed me that while I did not choose to have fibromyalgia, I do have a choice about how I live with it. I am grateful for the perseverance it took to "reframe" my attitudes about life with FMS. Doing so has enabled me to find joy in living with a chronic illness. I still have pain and fatigue in varying degrees. But through grieving my losses and then focusing on my many blessings, I have achieved peace and a quality of life I couldn’t have imagined when I first felt ill. I agree with actor Michael Fox’s sentiments about his life after receiving a diagnosis of Parkinson’s: "What he [the doctor] did not tell me - what no one could - is that these last ten years of coming to terms with my disease would turn out to be the best ten years of my life - not in spite of my illness, but because of it."
© Joan Buchman 2002. Source: www.cfidsselfhelp.org. All rights reserved.
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