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COMFORT DURING THIS BUSY HOLIDAY SEASON.
(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
DON’T IGNORE YOUR
USUAL DAILY SCHEDULE:
skip a meal.
Try to eat at the same
time you usually do.
Don’t skimp on protein
Carry water with you
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
FROM FRIENDS AND FAMILY MEMBERS:
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:
heard there is a cure for IC.”
IC patient: “Now, Aunt ______, I remember telling you last year that
there is no cure for IC.”
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
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
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
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
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
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
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
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.
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.
- Andrew & 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.
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.
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