Introduction: Common Problems, Shared Solutions
By Bruce Campbell
What works for managing CFIDS and fibromyalgia? This series will offer answers to that question from some experts: fellow patients. The patients I'll quote are people who have taken our CFIDS & Fibromyalgia Self-Help Course, which we describe as a solution-oriented discussion group.
Each week during the eight-week class, we ask students to share strategies that have helped them cope with chronic illness. By reading this series you will learn what fellow patients have found useful in areas such as pacing, achieving goals, controlling symptoms, reducing stress, managing emotions, improving relationships and minimizing relapses.
Common Problems in Chronic Illness
We begin our course by asking people to describe the biggest problems they face because of having chronic illness. Their responses demonstrate that being sick means much more than managing a medical condition. Chronic illness is comprehensive in its effects, touching every part of our lives.
Adjusting to Limits
The most frequently mentioned problem is having to adjust to strict and seemingly inflexible limits. Having a chronic illness means being able to do less. But illness also forces us to make mental and emotional adjustments as well. The experience of limits is often associated with a sense of powerlessness, requiring that we adjust our expectations of ourselves and our hopes for the future.
The toughest challenge for me was the drastic reduction in energy and how that affected my ability to work as a lawyer, and to be the wife and mother I was accustomed to being.
Probably the toughest problem for me has been adjusting to my body's new ‘ideal' activity level. Since the onset of CFIDS I had been going through a push/crash cycle, trying to live my old life and then ending up bed bound as a result. It took me quite a while to realize I could not just fight my way through the illness, and even a longer time to start adjusting my expectations of myself.
I can't seem to come to terms with what this illness has done to me physically, mentally or emotionally. Most days I feel very discouraged and hopeless. I am scared to death that this illness will define the rest of my life. What about all of my goals, hopes and dreams?
Living with Uncertainty
Having a long-term illness brings uncertainty, both on a day-to-day level and long-term. It is difficult to plan even one day when energy levels and symptoms seem unpredictable. And the unpredictability of chronic illness also brings uncertainty about the future, as we ask: Will I improve? Will I be able to support myself or become dependent on others? If I improve, how far and will it be lasting?
My energy and symptoms are like a very unpleasant roller coaster ride.
The biggest problem when I was first sick was wondering if the pain and fatigue would ever end. Once I had the diagnosis, I was relieved to have a name for my problem, but my future became more uncertain, as I read about FMS and learned that it was unlikely that I would get over it.
Third, people describe their struggles coping with symptoms. Pain, fatigue, and sleep problems are mentioned often in most of our groups, but in some classes mental problems such as poor memory and difficulty concentrating are mentioned even more frequently. In any case, symptoms create discomfort and make living difficult. Their severity challenges us to rethink our lives.
The biggest problem for me is dealing with the fatigue, pain and memory loss associated with this disease. I am currently back in school and have found it increasing difficult to concentrate and learn everything I need to know to change careers.
Perhaps the most difficult thing for me to cope with is the cognitive difficulties, not being able to remember things or speak fluently because my mind short circuits.
A big problem for me was trying to answer the question ‘How am I going to live with chronic pain and fatigue the rest of my life?' The past 9-1/2 years have been an exercise in letting go of denial, experimentation with coping techniques, dealing with emotions, and learning that there are ways that I can improve my lifestyle while living with this illness.
Students mention many frustrations in relationships. Probably the most common is not feeling understood or accepted. This includes not being able to convince others that we are ill or feeling disapproval and rejection. Having limited energy often creates strains in family relationships, with patients feeling guilty when they are able to do less than they or others want. Other family members may feel resentful at having to assume new responsibilities or at the loss of companionship. Lowered income can create financial problems. Getting out less can lead to a sense of isolation, both from the loss of social contact and from feeling different.
A major problem I continue to face is the effect CFIDS has on my family. My husband finds it discouraging, since his personal goals and our mutual goals seem much farther away and more difficult now. The kids try to pick up some of the slack at home, but they and my husband all seem more susceptible to fatigue of their own.
One problem I am dealing with now is educating my kids about my illness, especially my daughter, who is very angry about it, but won't talk to me about it.
The lack of understanding and compassion from friends and relatives is hard. I constantly feel I need to defend myself and my illness due to their comments and criticism. They don't believe I'm ill, they cannot believe what they cannot see and most days I look ‘fine'.
The Most Useful Coping Strategies
When we ask at the start of class what coping strategies they find most useful, students offer a variety of responses. They can be grouped into two large areas.
Pacing is the most common general strategy for managing illness. Pacing means both finding an overall activity level that the body can tolerate and determining how much rest the body requires. Specific strategies that are mentioned often include taking scheduled rests, limiting the number of trips outside the house per week, scheduling rest times before and after a big event like a vacation, being responsive to signals from the body rather than trying to "push through," keeping records to spot symptom triggers, and breaking tasks down into small steps with rest between each step.
What has helped me is to maintain as much routine in my life as possible, which includes regular resting. This really helps me to control symptoms. For example, if I have a regular bedtime, I sleep better.
Daily scheduled rests, no matter how good I feel, have been perhaps the single most helpful tool in my recovery. I have been amazed at what a difference short morning and afternoon rests have made to increasing my stamina, reducing my symptom level, and giving me a sense of control.
I try to budget my limited energy, by taking several rest periods during the day, breaking household chores up into manageable amounts, getting help with housework and reserving some energy for me to spend on small art projects.
Many people have commented on the importance of support from family, friends and fellow patients. Support can also come from other sources, such as pets, therapists and an individual's faith. Support from fellow patients can be particularly helpful, as they can provide information, understanding and inspiration.
I would not have survived this illness this long without my husband's support, and I also have some family and friends who really try to understand me. I also have to mention my dog who is wonderful company for me.
I belong to the local support group. It helps so much to talk to others who can understand.
I have two dear friends with chronic illnesses who have been a tremendous source of support for me. They have helped me keep my spirits up through the past several months when my health was deteriorating and I was having trouble finding a doctor.
Chronic illness is much more than a medical problem. CFIDS and fibromyalgia are comprehensive in their effects, changing how much we can do, our ability to work, our moods, our relationships, our finances, and our hopes and dreams for the future. Students in our groups report using many coping strategies. Probably the most common are reducing activity (pacing) and getting support.