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(December 2000)
My wife, Gaye, and I are very happy to join the other columnists of the Interstitial Cystitis Network. Together, we will cover the emotional and physical challenges of many IC patients. I am a psychologist and Gaye, who is an IC patient, has a background in movement and muscle re-education. Since the holidays are just a week away, we’ll begin our first column with the extra demands that occur this time of year.

Like all people, the IC patient has to deal with long shopping lines, heavy traffic, trips to the airport or to other cities, new activities, time schedules, diet changes and sometimes challenges from friends and family. Challenges for the IC patient can be numerous, especially because denial and unreal expectations are at an all time high during this holiday season.

Gaye and I have celebrated and survived thirteen Christmas and Hanukah seasons. It has not always been easy. Luckily, the majority of our friends and family are compassionate. However, as with everything to do with IC, we have learned through “trial and error” how to cope with and enjoy this time of year. We hope you will benefit from our following holiday survival list:

Never skip a meal.
Try to eat at the same time you usually do.
Don’t skimp on protein and vegetables.

Carry water with you everywhere.
Avoid tap water and ice cubes when away from home. Drink a familiar bottled water instead.

When possible, make sensible choices about the people you spend time with.
Try to limit your interactions with people who are not supportive. It’s not unusual to experience a worsening of IC symptoms when people challenge you. Pain is a protective mechanism telling you that something is not right.
Do not try to keep up with people who do not have IC.
Measure your successes in small increments. Keep your goals realistic so you will feel better about yourself.

Performance stress elevates this time of year. Holidays often serve to mark time. A romantic involvement may be scrutinized, a young couple may be expected to begin a family, and a single person may feel pressured about her/his career, or love life. Expectations and denial often seem to be a part of the holidays, and can be especially difficult for the IC patient. Other people’s comments can hurt. It is not unusual for family members, or old friends to hope that you are now well and no longer have to deal with an illness. That’s okay, and some people mean no harm, however, there may be people who are subconsciously angry with you or your “special needs.”
Here are a few examples of how to put the ball, or responsibility back in their court:

Comment: “I’ve heard there is a cure for IC.
IC patient: “Now, Aunt ______, I remember telling you last year that there is no cure for IC.”

Comment: “I know someone with IC who can eat chocolate cake.
IC patient: “Every person with IC is different. I thought that I explained this last year.”

Comment: “You look fine. I can’t believe that you aren’t well.
IC patient: “IC is an invisible condition, which sometimes makes life harder.” ·

Things usually take longer for the IC patient. When setting up plans and time schedules, commit within thirty minutes to an hour to avoid rushing. For example, “I’ll be there between one o’clock and one thirty,” or “one o’clock and two o’clock.”
If you are unsure about accepting an invitation, say that you will try to come, but you cannot make a commitment because your condition is not predictable.
Ask your friends and family members to take a cab or shuttle from the airport to avoid extra pressure.
Avoid volunteering to help out with last minute holiday tasks.
If you are preparing the holiday dinner, break up your duties over a few days. You need to pace yourself when performing new activities, such as extra lifting, chopping and rinsing.
Place the necessary pots and pans out on a table before beginning preparations in the kitchen. It can be physically difficult combining chores. Organize for easy access.
Let your kids ask friends over for holiday meals. If they are entertained, you will have less pressure.
Guests often bring new fragrances into your home. If you have chemical sensitivities and/or allergies, limit the toxic exposure in your home by burning only beeswax candles.
When invited to someone else’s home for a holiday meal, ask if you can bring a dish or make sure that you can eat some of the food that will be served.
Always eat before holiday parties.
Be sure to avoid restaurants that have set menus on holidays, including New Year’s Eve.

Be prepared when you leave home. Bring all of your medications with you, even if you haven’t needed to take some of them in awhile.
Bring a few of your favorite foods.
Bring your own pillow and bed linens if you are sensitive to certain laundry detergents.
If you are staying in someone else’s home and are sensitive to Christmas greenery and scented candles, ask to have no decorations in your room.
Move to, or stay in a hotel if you can’t control your environment, and/or feel as if you are too demanding.
Ask the hotel to use no air-fresheners in your room. Or, ask for a room that has not just been cleaned.
Avoid early flight times when flying. It can be very fatiguing to change your sleep patterns.
Get an aisle seat not too far from the restrooms on a plane. But, avoid sitting too near the restrooms if you are sensitive to disinfectants and air-fresheners.
Always carry food and water with you on flights.
Avoid rush hour traffic, even if it means staying at the airport awhile after your arrival.
Wear a pad while traveling in a car, even if it’s only for peace of mind.

Remember that there are thousands of other IC patients who will share your feelings this holiday and into the New Year. A little support from one or two of them can go a long way. We hope that our holiday & new year survival list will remind you to be very good to yourself.

“HAPPY HOLIDAYS” - Andrew & Gaye

About The Authors:
Gaye is an author and IC patient & support group leader who has been involved in IC work for years. In 1990 she published "Stretch Into a Better Shape" and produced a stretching and exercise video for IC patients in 1993. She is a specialist in Aston-Patterning movement and muscle re-education.

Andrew has over ten years of clinical and health care management position. He is currently the Administrator of Maison Hospitaliere, located in New Orleans. Andrew holds a Ph.D. in Special Education, a M.A. of Health Adminstration, M.A. of Clinical Psychology.

They welcome your comments and feedback on their articles at:

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