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Pacing for special events: slaying the dragon of post-exertional malaise

Wednesday 2 February 2011

CFIDS & Fibromyalgia Self-HelpFrom CFIDS & Fibromyalgia Self-Help:


Pacing for Special Events: Slaying the Dragon of Post Exertional Malaise

Strategies for Special Events

By Bruce Campbell

Pacing is a challenge during normal times, but can be especially difficult for non-routine events, which include vacations, holiday celebrations, moving and remodeling, having dinner guests or houseguests or even, for some people, leaving the house for a doctor's appointment.

Such special events create a double challenge if you have CFS and/or FM. First, they require more energy than normal daily life. For that reason, they can pull you outside your energy envelope, intensifying your symptoms. At the same time, you may want to be more active than usual or feel pressured by others to be more active, a second potential cause for a relapse. How can you enjoy such events and avoid a relapse?

We have found that three strategies are helpful in meeting the challenge of special events.

Extra Rest: Before, During and After

Store up energy by taking extra rest before the event; limit symptoms by taking extra rest during; and take whatever extra rest is needed afterwards. The amount of extra rest will vary; twice as much as usual would be typical.

A member of one of our groups gave an example. She wrote, "For a week or so before a trip, I double my normal daily rest time. I spend more than usual amounts of time resting while on vacation, and extend the practice for several days after returning. Also, I have had good success in reducing the effects of driving if I stop every two hours, tilt the seat back and snooze for 10 or 15 minutes."

Detailed Planning

The second strategy is to plan the special event in great detail. If you are traveling, this may include planning your activities for each day of the trip, including alternate activities you can do if your energy level is not what you expect. Depending on the severity of your condition, you might also arrange for a wheelchair or motorized cart in airports or when visiting places such as museums. If you are going to a family event, planning might mean finding out the schedule ahead of time and deciding how much activity you will have.

One way to enjoy a special event is by passing tasks on to others. For example, if you are accustomed to doing all the cooking for a holiday celebration, ask family members to each bring a dish. Another adjustment is to go to an event, but not stay for the whole thing or take periodic rest breaks.

Discuss Your Plans with Others

A third strategy is to talk about your limits to the other people involved in the event. After deciding on your level of participation, discuss your plans with the other people involved in the event, so they know what to expect from you. You might also alert them to the possibility that you may need to cancel out of some events and encourage them to do things without you at times when you need extra rest.

If you discuss your limits and the unpredictability of symptoms with others ahead of time, you can reduce the chances disappointment and create a climate of flexibility.

An Example: Houseguests

In the first article, I mentioned Rose, a bedbound person with CFS for whom family visits had triggered relapses that lasted several months. The heavy price for those visits motivated her to try something different and taking our pacing class provided her with an opportunity. A week-long visit by her step-daughter and seven year old step-granddaughter occurred during the class and Rose used our special event strategies to structure the visit.

She did three things prior to the arrival of her relatives. First, she reduced her usual activities for several days ahead of time, using the time for extra rest. Second, she created a plan for the visit. It involved alternating a day of socializing with a day of rest and also changing how she spent time with her granddaughter.

In previous visits, Rose had felt overwhelmed by the granddaughter's high energy level, so she decided to structure their time together so they engaged in quiet activities. Third, she discussed her plan with her daughter, who in turn explained it to the granddaughter.

Rose was successful in implementing her plan during the visit. After her visitors left, she spent most of two days resting, then returned to her normal activities. No relapse!

Instead of a family visit leading to a several month relapse, it was an experience of control through pacing. She looks back on the visit with a sense of triumph. Instead of triggering another serious relapse, this family visit was an experience of control through pacing.

About her time with her granddaughter, she wrote, "I had never even come close to surviving a visit from my granddaughter since developing CFS/FMS. It absolutely thrilled me that we were able to make some special memories together without it being damaging for me."

The message from Rose's experience: Just as the consequences of overactivity are out of proportion to the overdoing, the rewards of pacing can be out of proportion, too, in the other direction.

Note: The ideas in this series were first presented in a 2010 webinar conducted by the CFIDS Association of America. Slides from the webinar are available on the 2010 webinar page of the Association's website. The presentation is available on the Association's YouTube channel. For help planning a special event, see and/or print the Special Event Worksheet, found on the Logs, Forms and Worksheets page at this site.

The article originally appeared here.


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