How to Enjoy Special Events and Minimize the Price

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By Bruce Campbell

Special events such as vacations or holiday celebrations present a double challenge. On the one hand, non-routine events require more energy than everyday life, temporarily shrinking your energy envelope.

If you don't decrease your activity level to match your temporarily smaller envelope, the event will intensify 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.

In sum, a special event shrinks your envelope at a time you are tempted to do more than usual. How can you respond to this dilemma in a way that allows you to enjoy the event without paying too heavy a price?
 

Changed Roles and New Expectations

You may be able to minimize the cost of a special event by changing your role and level of involvement. For example, instead of doing all the cooking for a holiday celebration, ask family members to each bring a dish. Or you might attend a holiday celebration rather than hosting it.

Or you might go to an event, but stay two hours, rather than the whole day or take periodic rest breaks. Travel can be made more doable by being less active than you used to be and by spending extra time resting.

These adjustments to activity are based on a accepting a lower activity level and appreciating what you can do. By changing your expectations, you can focus on what you can do, rather than resenting all you are not able to. Here's what one person said.

I have benefited from the idea that half a loaf is better than nothing...both for me and for others. 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.

 

Extra Rest

A widely-used strategy for making special events more successful is to rest before, during and after the event. Store up energy by taking extra rest before the event; limit symptoms by taking extra rest during it; and take whatever extra rest is needed afterwards.

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, beginning a few days before she leaves and extending for several days after she returns. She makes sure that she doesn't take on any extra activities for several days before and 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. I accommodated by adding more rest: before, during and after trips. For a week or so before, 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 to 15 minutes.

 

Planning and Communicating

Another strategy is to plan 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 seriousness 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 activity you will have. Here's one student's description.

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."

After deciding on your level of participation, talk about your limits to the other people involved in the event, so they know what to expect from you. You might also alert the possibility that you may need to cancel out of some events if your symptoms are high. If you discuss your limits with others ahead of time, you can reduce the chances for surprise or disappointment.
 

The Special Event Worksheet

A planning tool that allows you to use many of the strategies mentioned above is the Special Event Worksheet. (To print a blank form, see the Logs, Forms and Worksheets page.)

This form helps you to decide how you will use your time during the event and also the actions you can take in the period leading up to the event and the time after the event. By planning, you can determine the actions you will take to avoid or minimize a flare-up of symptoms.

The example below shows how the worksheet might be filled out for a vacation. Scheduling extra rest and reducing activity before, during and after the vacation are the cornerstone of this person's plan. Doubling rest time before the trip stores up extra energy.

Extra rest while on the trip helps to limit symptoms while away. Planning to double rest time after returning home acknowledges that some recovery time is likely to be needed. Similarly, activity level is reduced during all three periods. The form provides a way to translate the need for lowered expectations into specific actions.

After deciding on her activity limits, the person using this form will discuss her activity limits with her family. If you discuss your limits with your travel companions ahead of time, you and they can plan to share some activities and your companions can do others on their own while you rest.