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Expanding the Envelope

If you live consistently within your limits, it is often possible to expand them, so that you are able to be more active without intensifying your symptoms. Your chances of success in this step are improved if you follow two guidelines:

  1. Extend your limits a little bit at a time
     
  2. Return to your previous level if symptoms increase

A “little bit” typically means no more than 5% to 10%, often less. The second guideline is based on the recognition that with all experimentation, some attempts work and others don’t, so we need a plan for the times when the experiment fails. In this case, failure means that extending limits results in an increase in symptoms. The response is to return to the old, proven-safe activity level.
 

We sometimes phrase this third part of pacing as “extend your limits, as allowed by the body” or “increase your activity in small increments, as tolerated by the body.”
 

Four Success Stories
 
To give you concrete ideas on how to expand your envelope, we suggest you read the Success Stories on this site. You'll find below summaries of four of those stories, told by people who made significant improvement using lifestyle change.

There are a number of strategies that appear in their accounts:
  • Keeping a daily health log
  • Taking daily rests
  • Aiming for consistency in activity level
  • Focusing on gradual change
  • Using experimentation
  • Managing stress

Rosemary

Rosemary Rowlands wrote about her improvement in the article Third Time’ Is the Charm: How I Learned to Pace Myself. Her article describes how she reversed a 20-year decline in her health that had left her housebound.

In her first attempt to learn pacing, she stopped working and took a long rest each day but otherwise didn’t change from her previous push and crash approach. In her second attempt, she focused on having the same amount of activity and the same amount of rest each day.

In her third phase, she worked on having a more consistent daily routine. Her efforts focused on “keeping records, making detailed daily and weekly schedules, resting frequently throughout the day, reducing daytime sleeping and spending less time in bed, being consistent in living by my schedule, and making changes gradually.”

Summarizing the results, she wrote, “Pacing has given me a way to make consistent, achievable changes in my life. I have increased my activity level by about 50% and I need less rest…. It took a lot of time and work to get to this point, but I’ve managed to stop and even reverse the trend of over 20 years of illness.”
 

Dean


Dean Anderson's approach was similar to Rosemary's, even though his starting and ending points were different. He functioned initially at a level corresponding to about 60% of normal and worked three-quarter time. (He describes his journey in the article Acceptance, Discipline & Hope: A Story of Recovery from CFIDS.)

He writes that the key to his recovery was to adopt an attitude that he called a particular kind of acceptance, which was not resignation but rather "an acceptance of the reality of the illness and of the need to lead a different kind of life, perhaps for the rest of my life."

He stressed the importance of consistency, saying he believed that the key was "to recognize and adhere to one's known limitations and to follow a strict regimen without periodically lapsing.”

His approach included keeping a daily health journal, eliminating negative influences (both people and attitudes), and “learning to be alone in silence,” which included living without television. A central element of his strategy was defining a safe level of work. Through experimentation, he concluded that he could work six hours a day without intensifying his symptoms.

After an eight-year struggle, he returned to full-time work and described himself as "substantially recovered."
 

Elena

Elena Rosen’s starting point was close to Rosemary’s, about 15% of normal. She rates herself at 98% now, similar to Dean’s final level. She has used a variety of strategies in her efforts to improve: experimentation, goal setting, record keeping, daily plans, and stress avoidance..

Summarizing her approach, she says in her article Using Targets to Improve Health and Gain Control that in her first few years with CFS, she “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.

She gives an example by describing how she added exercise as part of her self-management. Her first exercise goal was to walk 1/16th of a mile every day at a very slow pace. (That’s about the length of a football field.)

Once a week, if she was having a good day, she extended the distance by ten or twenty feet, increasing the distance “as long as I experienced no increase in my symptoms.” Over time, she added a short rest in the middle of her walk. And the result? “Now, I walk two and a half miles virtually every day.” That’s 40 times her original distance.

Kristin

Kristin Scherger describes her improvement in an article titled Expanding My Envelope: How I Balanced Work and CFIDS. When she became ill with CFS, she experienced a classic pattern of push and crash: “When my symptoms were strong, I would lie at home in bed for days. When I felt better, I would drag myself to work [as an occupational therapist] for several weeks before collapsing again and returning to bed.”

She tried working part-time, but she still experienced high symptoms and her life felt out of control. Next, she tried working as an on-call occupational therapist, but that was not successful either.

Logging convinced her that she was outside her Energy Envelope. She decided that if she didn't change careers to work that was less physically demanding, "I would never get off the roller coaster." She was able to achieve stability and expand her Energy Envelope by switching to an administrative position.

She wrote about her new, improved life: "My activity level and symptom level are now even better than those times a few years ago when I was not working at all." She rates herself at 60 on the Rating Scale most of the time and sometimes higher.


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