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When Elena joined our program in 2008, she was functioning at about 25% on the ME/CFS & Fbromyalgia Rating Scale. In 2019. she rated herself at 98%. What did she do to achieve that progress?

 

She writes, “For my first few years with CFS, I tried to improve by making sweeping changes, an approach that always failed. Then I learned how to set small, realistic goals and that has made all the difference. By setting short-term targets, I have improved to 98%, with much greater stability and a lower level of symptoms.”

 

Elena used what we call target setting: stating a series of specific and realistic goals, each of which can be accomplished in a week or so. Specific means that a goal is concrete and measurable.

For example, instead of saying “I want to get more rest,” you say “I will rest 15 minutes in the late morning on four days in the next week.”

 

You can determine if your goal is realistic by asking yourself how confident you are on a scale of 1 to 10 that you can complete the target successfully. If the answer is 8 or higher, you have a good chance to succeed. If your confidence is lower, we suggest restating the goal to make it less ambitious.

 

Elena used goal setting in several ways, including with exercise. She writes, “A good example of the power of small changes adding up over time is my experience with walking. I thought mild exercise would be good for me. With the idea in mind of setting a small, realistic goal, I made it a target to walk 1/16th of a mile every day at a very slow pace.” [Note: That distance is just slightly longer than a football field.]

“Once a week, if I was having a good day I started walking ten or twenty feet further. I kept slowly increasing the distance a little at a time, as long as I experienced no increase in my symptoms. As time went on I found that taking a short rest in the middle of my walk allowed me to walk even further. Over time, I've worked up to walking four miles a day and horseback riding once a week." 

 

Her experiments with goals were complemented by record keeping. Elena explains, “Setting targets worked hand in hand with keeping records. Without logging, it was impossible to see the bigger picture of how my targets were affecting me. Keeping a daily record showed how my energy, cognition, digestion, pain and sleep responded to different activities.”

“By logging both my activities and my symptoms I began to see patterns and the connections between them. Soon I started to experiment with targets in order to establish my baseline tolerance for different activities.”

“For example in order to find out how long I could drive without aggravating my symptoms and still feel safe, I set a target to drive for five minutes three times a week and log after each drive. After keeping this target for two weeks my logs showed this amount of driving wasn't having any ill effects on my health.”

“I kept this as my baseline, but as time went on and my energy increased I would set a target to add one more day a week of driving or to make slightly longer drives. Sometimes these targets succeeded and I was able to increase my baseline and drive more. Sometimes it was too much too soon and I needed to stay with the amount of driving I had been doing. Either way I always gained information about my limits.”

The Payoff

“I've found that knowing for sure how much and how often I can do an activity is freeing. Even if I can't do it as often as I'd like, it makes me feel more secure having these guidelines in place so I can go through my day without worrying ‘am I doing too much?’ or ‘Will I crash tomorrow?’"

 

She has used targets in many areas, for example to clean out a closet in her bedroom. She writes, “[The closet] was in complete disarray and I had been avoiding it since becoming ill because it felt too overwhelming. Looking at it from the perspective of setting a target made me realize that trying to clean it all in one go, like I would have in the past, would cause a flare. I realized I'd have to break it up into smaller tasks and set a time limit on how long I worked.”

 

Using two short sessions a week, she completed the job in three weeks. “This success, my experience with walking and my overall progress in recent years have all shown me that activities and tasks I had written off as being too taxing may still be available to me when I approach them a little at a time using target setting.”

Some things in our lives may be out of our control, but we can affect others. We agree with our friend Dr. Lapp who says that those people with ME/CFS and FM who do well share a positive attitude and a willingness to adapt.

 

For Elena, that has meant focusing on small experiments and tracking her experiments with record keeping. The result has been a restoration of much she had lost.