|
|||||||||||
The Why and the What of Pacing
(First of two articles in the series Learning to Pace.)
Note: The article below is based on a talk given as part of an event on managing ME/CFS conducted by the US Centers for Disease Control and Prevention (CDC) in 2015. Slides for the talk are available here.
I’d like to begin by focusing on the why of pacing by telling you a story about a part of life with CFS that is often the cause of relapses, namely non-routine events, such as vacations, the end of year holidays, or anything else that is out of the ordinary.
To contrast them with day-to-day life, we call them Special Events and we suggest people use three strategies to manage them, summarized in the words Rest, Plan and Discuss.
Rest more than usual: before, during and after the event
Plan the event in detail
Discuss plans with others to get their cooperation
Two Ways to Mange Houseguests
The story concerns a very challenging Special Event, hosting houseguests. The person involved was a woman named Rose, who was bedbound with CFS and other medical problems at the time of this story, although she improved substantially in the following years.
For several years during the time she was bedbound, she had annual week-long visits from her daughter and granddaughter. These visits triggered relapses that lasted about six months each. A very big price for a week with her relatives.
Just before one of these visits, Rose learned about the three strategies for Special Events said she would try them to see if they made any difference. The relatives came, stayed a week, and a couple of weeks later, Rose sent her report.
She said that, after her relatives left, she spent most of two days resting and then resumed her normal activities. So she replaced a six month relapse with two days of rest. This was not a one-time event. I checked with her about her family visits every year for four years. Every time, she said she used the same strategies and experienced the same success. And, by applying pacing strategies more broadly, she improved over that time from about 5% to 10% of normal to 35 to 40%.
Her two different ways of handling the visits illustrate a key point about CFS and a big part of why pacing is so helpful for CFS. We phrase it as Good News and Bad News: no matter how you live with CFS, you will have a big effect on your symptoms..
In the houseguest example, one way of managing a special event led to a long relapse and the other resulted in the avoidance of a relapse..
The Push/Crash Cycle
Before Rose learned pacing, she used an approach to managing CFS called Push and Crash, shown on slide 3. Maybe you’re heard of it.
It involves a vicious, repeating cycle. Starting at the 11 o’clock position on the image, a person pushes to get things done but overdoes it. Activity beyond what the body can tolerate leads to increased symptoms, shown at 2 o’clock.
A key about overdoing is that the intensification of symptoms is out of proportion to the overexertion. This phenomenon has a name: Post-Exertional Malaise or PEM. It’s common for PEM to last days, weeks or even, as in Rose’s early experience with hosting houseguests, months.
Flared symptoms lead to forced rest (4 o’clock). Rest reduces symptoms (7 o’clock), but leads to frustration (9 o’clock), which leads to another episode of overexertion and the cycle continues. This tends to be a repeating loop focused on symptoms: When symptoms are high, you rest. If symptoms low, you overdo.
I don’t know how you have thought about Push and Crash, but my initial reaction was to recognize myself and my first thought was: “Oh my, I have been creating a lot of my own suffering.”
But my second thought was hopeful. I said: “If the way I lead my life has such a direct effect on my symptoms, this effect should work in two directions. If living one way increases my symptoms, there should be a way to live that reduces them.” The Benefits of Pacing
That other way of living with CFS is pacing, which offers an alternative to push and crash. Pacing has many benefits, including:
I’d also add to the list that pacing is free and something you can start today. No waiting for clinical trials and FDA approval of this treatment!
The Three Parts of Pacing: Find, Adapt, Extend
Pacing is a very simple idea focused on the concept of limits. ME/CFS imposes limits and exacts a big price in increased symptoms if we go outside those limits. But if we can stay within the limits, we can regain control, lead a more predictable life and have a good chance to improve.
There are three parts to pacing:
1) Find Your Limits: Define your limits or Energy Envelope
2) Adapt to Those Limits: Adjust your life so it fits within the envelope
3) Extend Limits: When you’ve done the first two, work to expand your envelope
Let me say something about each part.
Part 1: Finding Your Envelope
You can get an idea of your overall limits by placing yourself on our 0 to 100 Rating Scale. When using the scale, ask yourself: how many hours of activity can I sustain without intensifying my symptoms?
Another way to get a general idea of your limits is to ask: how many times a week can I leave the house for an hour or two without intensifying my symptoms? There are three broad categories of severity of CFS: mild (leave house every day), housebound (once or twice a week) and bedbound (rarely leave house). It’s also very helpful to define limits in detail. For example, you can discover your limits for various kinds of physical activity such as how long you can do housework without worsening your symptoms, how long you can stand, and how far you can walk or drive a car.
You can also define your limits in other areas such as mental activity (for example, time on computer), social activity (time with people), vulnerability to stress and sensory overload, as well as the amount of sleep and rest you need. This part of pacing overlaps with part 2: You may find, for example, that if you break up housework into short sessions with rest breaks in between that you can do more without intensifying symptoms. I’ve given references to specific techniques for defining limits and for the other parts of pacing on the CDC Talk page on this site..
Part 2: Adapting to Your Envelope
The second part of pacing is adjusting your life so that it fits within your current limits. This is a gradual process, involving the use of multiple strategies. I’ll describe three of the more popular strategies. There are links to more on the CDC Talk page.
The first strategy is scheduled rests. This is one of the most popular pacing strategies and the one that people in our program often try first. It is typically helpful for 80% to 90% of people who try it. The idea is to break up your day by alternating periods of activity with time lying down.
People with less severe CFS often use a couple of planned rests a day of 10 to 20 minutes each. Those with more severe CFS/ME often benefit from taking a 10 to 15 minute break every hour or two. A second pacing strategy is the use of rules. Rules describe what you will do in a given situation. For example, based on what you learn about your limits, you might establish rules for how long to stay on the computer, how far you will drive, when you’ll go to bed, and when and how long you will rest daily.
The idea is to use rules as a transition to developing new habits. It can help to state rules in an If/Then structure, for example: If it's 11 am, it's time for my morning rest break,
If it’s 9 pm, it’s time start getting ready to go to bed
A third strategy is making daily and weekly plans. A good place to start is by planning a day at a time and, when that’s successful, move on to planning a week at a time. One way to have a realistic plan for a week is ask yourself “what level of activity can I do every day for a week without worsening my symptoms?”
Let me give you an example from one of our Success Stories, titled Third Time’s a Charm by Rosemary Rowlands. Before she started our program, she had declined gradually over a 20-year period to the point that she left the house only once or twice a week.
Her article describes how she used an activity log to determine a realistic schedule, keeping records for two weeks and dividing the total time for each activity by 14. Next she made a schedule of activity and rest for a week.
Finally, each evening she made an hour by hour plan for the following day. Using these pacing strategies, she increased her activity level by 50% in two years and reported that as a result, she goes out once or twice a day rather than once or twice a week. Part 3: Extending Your Envelope
When we live consistently within our limits, it is often possible be more active without intensifying symptoms, part 3 of pacing.
The formula we use for safely extending limits consists of two elements: first, extend limits only a little bit at a time (“little” typically means no more than 5% to 10% and often less) and second, return to the previous level if the new level increases symptoms. Here’s an example from a woman named Elena, who was functioning at about 25% of normal when she started with us, but who now, six years later, is at 80% of normal. She applied our guidelines to expand her envelope for exercise, another area that, like special events, often results in relapses.
She wanted to exercise by walking and started by asking herself what would be a realistic initial goal. She guessed it would be to walk 100 yards every day. She viewed her initial goal as an experiment and was open to reducing the distance if 100 yards intensified her symptoms.
She also had a strategy for expanding her walking envelope. She decided that once a week, if she was having a good day, she would extend the distance by 10 to 20 feet (that’s 3 to 6% of her initial limit), but would return to the previous level if she experienced an increase in her symptoms. In other words, she used the guidelines mentioned above.
Somewhere along the line, she made one addition to her program; she added a rest break in the middle of her walk. The result? She now walks two and a half miles virtually every day, 40 times as far as her initial distance.
Summary
Here’s a brief summary of what we’ve discussed:
1) The Why of Pacing
The way we live our life has big effect on our symptoms and even on the course of CFS. Pacing offers a way to reduce symptoms, regain control, and increase our chances for improvement. 2) The What of Pacing
Pacing has three parts, all associated with limits: Find your limits: Define both your overall and your detailed limits
Adjust your life to fit within your limits Extend your limits as allowed by the body |
Print
Email a Friend
|
|||
