My Plan for Victory
In 1993, three days after enjoying a breakfast buffet with my eighty three year old mother, we both came down with the flu. My mother recovered in ten days and I haven’t recovered yet. After three years of fatigue and frustration, and endless trips to many doctors, a caring physician diagnosed me with Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical Sensitivity Syndrome.
I soon realized that life as I knew it would never be the same. The unnatural fatigue, frequent inability to focus, shortness of breath, memory lapses, “brain fog”, body aches and pains had become all too familiar. I was angry at the world, myself and my failing body. I ranted and railed against the body that had let me down and the illness that refused to be healed; but I quickly found out this attitude defeated my purpose, and the stress involved made me more tired than ever.
Draining, too, was the anger and resentment coming toward me from friends and family.
“Why have you changed?” was the question I heard most. No matter what I said or did, I couldn’t make anyone understand that I was really sick. After all, I looked well and sick people are supposed to look sick, aren’t they? If I maintained a front of wellness for their benefit; no one believed I was ill, yet honesty didn’t seem to work either. I was blessed to have several friends who stood by me, no matter what and are still dear friends that I am fortunate to have by my side. But many other friends dropped me from their “A list” judging me no longer dependable. It wounded me to learn these were “fair weather” friends and I grieved their loss. Between the changes to my body and the loss of so much social and emotional support, I found myself on foreign ground with few resources to marshal to my defense.
Creating a Battle Plan
One of my husband’s favorite sayings is: “problems are to solve.” When it was apparent that this illness was not going away, I was forced to sit down and find solutions to my problems. I drew on my spiritual faith, knowing I could not resolve them by myself. I made a list of my problems and on another list, I started working on the solutions.
I spent two days, cloistered away from everybody, working on a plan that would help me come to terms with my illness. Stress reduction and rest emerged in a tie as my number one priority, so I worked everything else around that.
The first thing I did was to write a letter to family and friends, stating the facts of my illness. I asked for understanding and told everyone that I needed help. I made a list of the help I needed and when people called to help, I was no longer hesitant about receiving. Every one I contacted reacted favorably and was glad to have some understanding of what a PWC needs. My pastor thanked me for helping him understand the complexities of CFS.
Many activities I had enjoyed before CFS were no longer possible for me. As my next tactical maneuver, I concentrated on identifying the activities, new or old, that could still be satisfying within my limitations. I found my highest “energy hours”, (between 10:00 AM to 4:00 PM), and strategically scheduled activities to take advantage of them. Most evening events were not possible for me, unless I rested for two days ahead. I started meeting with friends for lunch instead of dinner, matinee movies instead of evening movies. This way I could keep in touch and not feel as if I were the odd man out. When evening invitations arrived, I referred to my energy plan and made a decision on each event, always adding “please ask me again” if I decided that I couldn’t attend. That kept an important door open for special occasions.
Beyond the Daily Battle
Once daily coping improved, I came to the point where I asked myself what I was going to do with the rest of my life. I needed a purpose; I needed to feel that I could still contribute to society. For me, that meant returning to my first love, which is writing. Although my work output was slower, I found great satisfaction in the fact that I could write whenever I felt well enough to do so. If possible, find your own personal passion and devote a small part of your energy to it.
Also important is laughter, which can improve health and may even help CFIDS sufferers reduce their pain. When we manage to laugh through the pain, it can be counted to our credit. Over time, I managed to restore my sense of humor; to focus on the good things left in my life. With the discouragement we all face daily, it’s important to have a good sense of humor; with ourselves and with others. It’s beneficial for everyone’s frame of mind to know they can laugh along with us.
The war on CFIDS isn’t over yet; as we continue marching toward the victory, I believe that PWC’s are the “Walking Warriors” of this world full of hurting people. We are courageous and tenacious; we will be here, cheering, when the victory is won.
Joy L. Hale
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