Dr. Bruce Campbell is a recovered ME/CFS patient and former consultant to self-help programs for chronic illness at Stanford Medical School. His nonprofit site offers articles, low-cost online self help courses in moderated discussion group format, and free follow-up programs & support.
A woman with CFS told me recently that when she feels discouraged, she motivates herself by aiming for a 1% improvement in some part of her life. I think she has found a secret to getting better if you have CFS or FM: think small.
Very few people hit home runs with these conditions. The chances are low of finding something to quickly restore your old life. Most experts agree: the most powerful treatment for both conditions is lifestyle change, which means changing our habits and how we live our daily lives. This is a gradual process, but over time can be transforming. Hitting a lot of singles doesn’t grab the headlines, but in the game of living with CFS or FM, it’s a winning strategy.
Here are seven examples.
1. Take Planned Rests
Setting aside time every day for rest breaks can help reduce symptoms, increase stability and, ironically, reduce total rest time. Many people make it their first change when they start our program. Here’s what two people said about their use of planned rests:
“I decided to incorporate two scheduled rests into my day and the results have been incredible. My symptoms and pain have decreased and I feel more ‘in control’. My sleep has been more refreshing and even my mood has improved.”
“I have been resting in between activities, sometimes only for five minutes. For the first time in the four and a half years that I have been ill, I feel that it is possible to manage my symptoms and have some predictability in my life.”
If you would like to try planned rest, set aside one or more times a day and find a quiet place where you can lie down with your eyes closed. (For more, see the article “Reducing Symptoms with Planned Rest.” )
2. Get Support from Fellow Patients
Serious illness is isolating and discouraging. Being in contact with fellow patients counteracts isolation and can offer inspiration, encouragement and practical coping strategies. Here’s what two people in one of our recent classes said about their experience.
“It is so wonderful to find a community of people who really understand what I’m going through. I am so encouraged by hearing about the different and creative ways everyone has found to cope with their illness.”
“It is so affirming to hear how others have struggled and the strategies they have developed to cope. It gives me great hope.”
If you’re feeling isolated and would like more support, one place to start is by joining one of our self-help groups. Another alternative is to link up with an in-person or online support group. (For ideas on how to do the latter, see the article “Finding Support Groups and Doctors.”)
3. Identify What Helps & What Hurts
CFS and FM symptom levels depend in part on how people lead their lives. For example, if you are more active than your body can tolerate, your symptoms will increase. If you remain within your limits, you can gain some control.
Through self-observation, you can discover what intensifies your symptoms and what helps you to feel better. Then, over time, you can adjust your life so you do less of the things that make you worse and more of those things that help. A starting point is to spend a few minutes making two lists:
• One of things that make your symptoms worse
• And the other of things that give you a sense of control.
(For sample lists, see the section on self-observation in chapter 4 “Becoming a Self Manager” of The Patient’s Guide to Chronic Fatigue Syndrome and Fibromyalgia.)
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4. Ask: What Can I Do Today?
Change starts with a single step. Ask yourself: What is one small thing I can do today for my health? The idea is to focus on a goal that is both specific and realistic, maximizing your chances for success. For example:
• If you want to improve your sleep, you could make an appointment to discuss sleep medications with your doctor.
• If you feel isolated, you could call or email a friend.
• If overdoing is a problem, limit your time on the computer today.
• If you feel disorganized, spend 15 minutes cleaning up your desk.
The aim is not to solve all your problems in one day, but rather to take a step that counteracts helplessness and creates some forward momentum.
5. Do a “Should” Review
Do you feel guilty about all the things you think you should do but aren’t doing? It’s a common problem for people with CFS and FM. Illness limits what we can do, but often we are slow to adjust our expectations to fit our reduced abilities. One solution: do a reality check on your expectations.
• Write down what your inner voice says you should be doing. For example: “I should work to support my family” or “I should fix a big dinner every night.”
• Then evaluate your thoughts, asking to what extent the thoughts are valid.
• Then, based on your judgment of the extent to which the expectation is realistic, adjust or replace your thought. For example, you might tell yourself “I can contribute to my family in other ways besides work” or “I will make sure my family eats well, even if I don’t prepare the food myself.”
6. Start a Health Log
Written records are a powerful tool for discovering what makes illness worse and what helps you feel better. With a few minutes a day of writing, plus some time spent periodically reviewing the records, you can see patterns and discover the many different factors that contribute to symptoms.
7. Identify Your Relapse Triggers
Relapses are a common and often demoralizing part of CFS and FM, but it’s possible to reduce their frequency and severity. One place to start is by identifying those things that trigger setbacks. These factors could be actions you take, or events that happen to you.
Then you can work at reducing the frequency and severity of setbacks. You’ll find a list of common triggers and other ideas about minimizing flares in the article “Controlling Relapses.”
Living with CFS and/or fibromyalgia can feel overwhelming. An effective response is to take a series of small, realistic steps that improve your quality of life: the 1% solution.
[Read also the interesting newspaper article “Sick and Tired Finds Company.” It describes a patient class that Dr. Charles Lapp ran using these ideas and a curriculum Bruce Campbell developed. “We call it coaching,” says Dr. Lapp. “Patients don’t need psycho-babble, they need help understanding their illness, coping with day-to-day issues, and regular support.”]
Note: This article is reproduced here with the author’s kind permission from his CFIDS & Fibromyalgia Self-Help website.