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(One article in the series Pacing: What It Is and How To Do It.)

 

Pacing is a challenge during normal times, but it can be especially difficult for non-routine events, such as vacations and the end of year holidays.

 

For example, in one survey of people with CFS and FM, more than 90% said they experienced a relapse due to the holidays.

 

A further challenge is that such events are common. In addition to travel and the holidays, they include family occasions like birthdays and weddings; family crises like a serious illness or even a death; and other events such as moving and remodeling, having surgery, having people over for dinner or as houseguests, and, for some people, even activities like going to a restaurant or a doctor’s appointment.

 

We came up with the term Special Events to reflect the fact that many different non-routine events can trigger relapses and to draw attention to the need to treat non-routine events differently from everyday life.

 

Three strategies allow enjoyment of such events while minimizing the cost.

Strategy #1: Take Extra Rest Before, During and After

 

The first strategy for minimizing the effects of special events is to take more rest than usual: before, during and after the event. (We believe that the most effective form of rest is lying down with eyes closed in a quiet place, but taking a break to recharge your batteries is the main idea.)

 

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 from person to person and event to event; twice as much as usual is common.

 

A member of one of our groups gave an example. If she is going on a one-week vacation, she plans for a two-week period. She makes sure that she doesn’t take on any extra activities for a few days before and a few days after her trip. She also makes sure that she paces herself carefully during the trip, resting during her non-active times. After returning, she continues to take extra rest.

 

Another person reported a similar strategy: “It took me quite a while, but I finally realized the toll that travel and driving have on me. 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.”

Strategy #2: Plan in Detail

 

The second special event strategy is to plan the event in great detail.

 

If you are traveling, this may include planning your activities for each day of the trip, including rest breaks and alternate activities you can do if your energy level is not what you expect, and activities others can do without you.

 

Depending on the severity of your condition, you might also arrange for a wheelchair or motorized cart in airports. If you are going to a family event, it might mean finding out the schedule ahead of time and deciding how much of the event you will participate in or arranging for a place to take rest breaks.

 

One person in our program explains how planning has enabled her to stay within her limits while traveling. She says, “Making a commitment to myself to stay within a safe activity level has helped me resist the temptation to do too much when on the road. I can say to myself, ‘I know you want to do this and people are pressuring you, but you decided before you came that this wouldn’t fit into your envelope’.”

 

Entertaining and family events have other challenges, many involving changing your role and level of involvement. For example, if you are accustomed to doing all the cooking for a holiday celebration, you might ask family members to each bring a dish. Or you might go to an event, but stay two hours, rather than the whole time or take periodic rest breaks.

 

These adjustments to activity are based on accepting a lower activity level and appreciating what you can do. As one person said, “I have benefited from the idea that half a loaf is better than nothing...Even if I haven’t been able to do everything I did before becoming ill, making compromises has enabled me to participate at times somewhat outside my envelope so that I increased my symptoms somewhat but didn’t suffer a bad flare-up.”

 

 

Third, after deciding on your level of participation, discuss your plans with other people to gain their understanding and cooperation. 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.

 

This final step of discussing plans with others often involves educating others about CFS and FM, a task that can take some time and is not always successful. One person in our program reported that he has come to accept that he must give frequent reminders to his family about his limits.

Another commented that learning assertiveness has been crucial to her family's acceptance of her FM. She explains that "for a long time, I told my family that I had a serious condition, but I also always said Yes to their requests. They didn't start to honor my limits until I put limits on what I would do for them."

 

The last comment suggests that successful adaptation to CFS or fibro involves not just altering what we do, but also how we think. We have to make mental adjustments in how we understand ourselves and then translate those into action. A big part of mental adjustments is changing our self-talk (the things we say to ourselves silently).

 

For example, one person reported that she grew up with a message in her head, "I always finish anything I start." Once she had CFS, doing that led to relapses and that led her to replace "work until done" with "I rest when tired." Another person used to tell herself she was weak if needed to take a rest. Now she says "rest gives me quality time with my husband and grandchildren."

 

 

We have often observed people saying they thought they had only two options: either experiencing the special event as they always have or not participating at all. We encourage you to think of a special event in terms of a many different possibilities, each with in a particular level of participation and effect on symptoms.

 

As shown by the success story below, it is often possible to reduce the toll on symptoms dramatically while reducing participation less proportionally. The key is to think of a variety of possible options.

For example, different ways to have a family holiday meal might include having several family members share responsibility for portions of the meal, rotating the event among different family members, having the event catered and going to a restaurant.

 

So how do these strategies get implemented and do they help? Here’s an example from Rose, a person who was bedbound with CFS during the period in which the events below occurred. (She later improved substantially.)

 

For several years during the time she was bedbound, annual visits from her step-daughter and step-granddaughter had triggered relapses that lasted up to six months each. The heavy price for those visits motivated her to try something different and taking our pacing class provided her with an opportunity to use our special event strategies to structure the visit.

 

She did three things before the visit. 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. She spent time with her granddaughter every other day, but in a quiet way that did not overwhelm her. After her visitors left, she spent two days resting and then resumed her normal activities with no relapse.

 

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

She wrote about the visit, "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."

 

Rose has used the same strategies to manage four subsequent annual visits by her daughter and granddaughter and had the same success.

 

Her experience is an example of the effects of avoiding Post-Exertional Malaise. Just as the consequences of overactivity are out of proportion to the overdoing, sometimes the rewards of pacing can be out of proportion, too, in the other direction.

 

 

We have a simple tool to help you have better non-routine events: the Special Event Worksheet. (It and all our other forms, are available for downloading and printing on the Logs, Forms and Worksheets page.)

 

You can use the Special Event sheet to help you to plan how to use your time during a special event and also the actions you can take in the period leading up to the event and the time after the event.

 

Here’s a sample of how the worksheet might be filled out for a vacation.

 

Event: Family vacation

 

Double normal daily rest time for one week before trip

No special events (e.g. nights out of house) for one week before trip

Decide on activity limits during trip (e.g. 4 hours per day)

Discuss limits with family

 

10-15 minutes rest every two hours while driving

Double normal daily rest time; take more rest as needed

Maximum of 4 hours of activity per day

 

Double normal rest time for one week after returning home

No special events for one week