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Four Pacing Success Stories

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 By Bruce Campbell

(Note: Last in the series Pacing: What It Is and How To Do It.)
To give you some additional perspective on how to expand your envelope, here are four stories of people who made significant improvement using pacing. Their experiences are summarized from articles on our Success Stories page.
As you read through them, you’ll see that a number of strategies appear in several or even all of 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: Third Time’s a Charm
The first example is Rosemary Rowlands, who wrote about her improvement in the article Third Time’s a Charm: How I Learned to Pace Myself. The article describes how she reversed a 20-year decline in health that had left her housebound.
She summarizes her improvement by saying “I now go out once or twice a day, rather than once or twice a week. I spend time socializing and doing enjoyable activities instead of using all my energy just taking care of my basic needs. My health is more stable and instead of often feeling helpless and hopeless, I feel much more in control.”
The title of her article refers to the fact that she made three attempts to learn pacing. In the first, 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.

During this time, she took our introductory course and reported "the class taught me the importance of having good sleep, the effects of sleep on pain and fatigue, and the usefulness of record keeping, routine and schedules. It also gave me a tool for achieving goals by taking a series of small, realistic steps.”
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 writes, “Pacing has given me a way to make consistent, achievable changes in my life. I feel in control rather than always being driven by my symptoms. Using pacing over the last two years, 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 twenty years of illness. My progress has given me a real sense of achievement and hope for the future.”

Kate: Improvement Using Targeted Pacing Strategies

Kate Morgan entered our program placing herself at about 25 on our Rating Scale. In less than two years, she improved enough to rate herself at 55. She credits four pacing strategies as crucial to her improvement.

1) Taking Rest Breaks
She writes in her article Pacing Strategies That Help Me that “no treatment, medication or supplement works as effectively to control my symptoms as my rests. In the article How I Used Rest to Escape Push and Crash, she describes five different types of rest.

First is scheduled rest breaks, which she takes three times a day. She lies down in a quiet place for 15 minutes to an hour and usually listens to a guided meditation.

Two other types of rest she calls pre-exertion rests and post-exertion rests. These are brief rest before and after any activity that she rates as medium or high demand. These involve either lying down or sitting in a chair, closing her eyes and doing some deep breathing.

The final pair, which she uses on an “as-needed” basis, she calls mini rests and out-of-house rests. The first involves taking five to 15 minute rest breaks either sitting quietly or lying down. She does them if she has a sudden feeling of being extra tired. Lastly, she takes a walker when outside her house, enabling her to sit down as soon as she starts to feel increased fatigue, muscle pain or weakness.

2) Using a Heart Rate Monitor
A heart rate above a certain threshold triggers an intensification of symptoms, so she uses a heart rate monitor to tell her when her heart is over her limit. She writes “If I’m over my limit, I stop what I'm doing and rest until my heart rate comes back within my safe zone.” (For information about finding your heart rate threshold and tracking heart rate, see the article Pacing By Numbers.)

3) Using a Pedometer
Through experimentation, Kate found that her pain and fatigue increase if she takes less than 3,000 or more than 4,000 steps per day. She wears a pedometer to kept her activity within that range. (For information on pedometers, see the article Pedometers: A Tool for Pacing.)

4) Logging
She uses a phone app to log activity levels and symptoms. It takes her only a few minutes a day to enter information and the app displays the results in a bar graph. She reports that the system helps her plan her daily activity and rest breaks.
Elena: Patience Brings Progress
You met Elena Rosen in the previous article, when I described how she gradually expanded her envelope for exercise from about 100 yards a day to four miles.

Her starting point in 2004 was close to Rosemary’s, about 15% of normal, but her current level (2019) is 98%. (She describes her experience in four articles. To read them, enter “Elena Rosen” in the search box in the top right corner.)
Elena has used a variety of strategies in her efforts to improve, focusing on:
  • Record keeping
  • Experimentation
  • Target setting
  • Daily plans
  • Stress avoidance
She developed a health log based on our Activity Log. When she reviewed her logs, she focused on the days she had rated very good or very poor.

She writes that her logs “provided me with ideas for what helped and what made my symptoms worse. For example I could see how surfing the internet, something I had thought of as a fairly low-impact activity, increased my cognitive symptoms if I stayed on for more than an hour and even affected my sleep regardless of what time of day I did it.”
Once she had identified something that intensified her symptoms, she experimented, often using targets (short-term goals). As she explains: 
“In the case of surfing the internet, I began by experimenting with  limits on my computer time and by confining my computer usage to certain times of day, always noting the effects on my cognitive symptoms and sleep… I am careful to introduce new things one at a time and that makes it easy to see the impact, either positive or negative, they have on my symptoms.”
Another part of her approach is to have a daily plan. “I schedule activities and rest in time periods that correspond to my natural energy fluctuations. This has led me to living within my Envelope and reliably feeling better. While it may seem limiting to live on a schedule, it has brought much needed consistency and balance to my life.”

She adds, “Once I had formed a good understanding of my Energy Envelope I was able to start to develop routines. I used target setting to introduce new elements into my life one at a time.”
“It's taken me a bit of trial and error to find these routines but they are the foundation of [my] improvement.”
She also makes use of stress avoidance to stay within her Envelope. “The simplest way for me to deal with people or situations that are stressful is to avoid them as much as possible…. Remembering what I felt like in the past when I've overdone it and crashed helps lend me the strength to say ‘no’ to situations and people that I know will overwhelm me.”
Kristin: Improvement Through Career Change
Kristin Scherger describes her improvement in an article titled Expanding My Envelope: How I Balanced Work and CFS. When she became ill with ME/CFS, she had just started a career as an occupational therapist.

Because of ME/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 for several weeks before collapsing again and returning to bed.”
Worried that she would lose her career, 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.

She writes, "I would work myself to exhaustion, then require days of rest to recover. My life remained on a constant roller coaster." She felt frustrated at her patients. "The career I once loved had become a nightmare."
Over time, she recognized that she wasn't improving. Logging convinced her that she was outside her Energy Envelope. She placed herself about 30 on our Rating Scale on days she worked, but 45 when not working. 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 Envelope by switching to an administrative position. She wrote about her new, improved life: "I now spend significantly more time active than in rest. This is the complete opposite of my experience when I was working as an occupational therapist." 

"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 most of the time and sometimes higher.
Kristin's story illustrates two themes we have seen often as people struggle with balancing illness and work. First, finding a long-term solution took some time. Kristin tried several arrangements before finding one that worked for her.

Second, the eventual solution respected her limits. Her attempts failed until she found a situation her body could tolerate. Once the strain was removed, her body was able to heal enough to expand her limits.