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June 2001
Travelling From A Spouse's
Perspective
Travel can be
a challenging task for IC patients. There have been several instances
over the years when my wife and I have had to shorten, modify, or
even cancel travel plans because of this disease. We never know what
obstacles we will face once we leave our home, however we know the
obvious ones.
My wife Gaye was
diagnosed with IC two months before our wedding. During that time
I was finishing my dissertation on learning disabilities. I began
to see how my training might apply to modifying our lifestyle to IC.
For example, many of the learning disabled individuals I helped had
trouble following directions to a job interview. So, I would suggest
that they drive to the location of the interview the day before in
order to reduce their stress. The same technique has helped us, except
instead of not knowing how to get somewhere, we take trial runs to
learn where bathrooms are located.
Sometimes I'm
a little hard on Gaye before a trip. I remind her not to cheat on
her diet, because I want her to be well. Even on a trip I can be confronting
when I don't want her to hurt herself with the wrong foods or activities.
I even make her mad at times, and I know that I am being a bit selfish
because when she is in a flare-up our plans have to change.
Although I consider
myself an old pro at traveling with a person with IC, I still feel
resentful at times when trips do not turn out as I had hoped. I try
to deal with these negative feelings by learning to be realistic,
especially about my expectations. I do not build up high hopes about
anything. Then, if things work out, I am pleasantly surprised.
At first, like
other couples, my wife and I learned to travel the difficult way -
through trial and error. As time has passed we have learned to anticipate
problems and plan accordingly. I would like to share some of things
we think about as we plan a trip:
1. Feeling
in control - Schedule trips when your partner is strongest.
This may mean avoiding times of the month when IC symptoms have
a chance of flaring, or it may mean avoiding trips during certain
seasons that bring allergies. Try to keep the length of trips reasonable.
Taking several three-day trips in a year, instead of one seven-day
trip, may be more manageable.
2. Psychological Security - I know that this is obvious,
however we have found that it is necessary to know where bathrooms
are located where we live and when we travel. We often will not
drive on a freeway if there is the possibility of a traffic jam
or a lack of bathrooms (rest stops and fast food restaurants) along
the route, even if it will take longer.
3. Flying - The unpredictability of airport and airline food
can be problematic. Many IC patients find it helpful to fly in the
late afternoon or early evening so that they can have a good/bladder-safe
breakfast and lunch prior to the flight (the bladder is most active
in the morning and early afternoon). It is always a good idea to
bring food on the plane and sit in the isle seat so not to disturb
other passengers during frequent trips to the bathroom.
4. Environmental Sensitivities - My wife's chemical sensitivities
put her at risk when she leaves the safety of her home. We always
reserve or ask for a non-smoking room and a room that has not been
recently painted or cleaned with air fresheners, scents, sprays,
or ozone machines. We put scented soaps etc. in drawers and bring
our own pillow and pillow cases.
I have found that my wife's chemical sensitivities have been more
problematic during travel than her bladder. There have been several
instances in which we have had to be assertive with hotel managers
and ask to switch rooms because of fumes. We have even had to leave
one hotel and go to a more expensive one in order to meet our special
needs. Although I did not like spending additional money, it was
one of the best investments that I have made because the rest of
the trip was a big success!
5. Staying with other people - Family members and friends, however
well-meaning, often do not understand the unique problems of the
IC patient. The same chemical sensitivity issues that can come up
in a hotel can also apply to others' homes. Feelings can be hurt
when problems such as midlew or scents are pointed out. Sharing
a bathroom is also not ideal, nor is sharing food. The IC patient
can go hungry if the dinner prepared is not bladder-safe.
We often choose
to stay in a hotel and rent a car, instead of staying in the homes
of friends or family members and depending on rides. The privacy
of a hotel room helps my wife rest and pace herself during a trip.
Some hotel rooms also have kitchens. This can very helpful when
restaurant availability and food are a problem. Having a car enables
us to find a variety of restaurants, or go to a grocery.
One has to always consider the possibility that friends and family
members will feel offended if the IC patient stays in a hotel. However,
relationships with these people can also become strained when IC
becomes an issue in their homes. Quality of time is often more important
than the quantity of time you spend with others!
6. Driving in a car - We always make other people aware of
the problems (i.e., need for frequent bathroom stops and dietary
requirements) associated with IC prior to taking a road trip with
them. We will not travel with those who are not accepting of this
disease. We usually bring an ice-pack in a cooler, as well as a
portable potty or a bag full of towels (as suggested by Jill Osborne)
that can be used to cover up with, void into, and clean-up
7. Packing - My wife always brings her medication and doctor's
phone number. We have found that it is better to bring too many
things, instead of not enough, in case of emergencies.
8. Physical Stress - Travel can be physically compromising.
Sitting in one position for too long in new environments, such as
cars or airplanes, standing in lines, lifting and carrying bags,
even when they are light, can affect muscles and posture, and result
in pain. Daily stretching is essential.
Exercise of the Month
(4)
Side Stretch (Standing)
Lateral torso muscles, shoulder girl
Starting Position
Stand with feet wider than hips and angled out at about 45 degrees.
Stretch arms over head by earts and secure wrist with opposite hand.
Progression
Slightly shift body weight over to side of secured wrist. Bend knee
and stretch upper body in opposite direction. Head follows stretch.
Repeat on other side.
Avoid
Shifting weight too far to side of bent knee

(5) Spine Stretch
Starting Position
Stand with feet angled out, one foot half way in front of the other.
Loosely cup hands around the back of the head. Thumbs along the bottom
of the skull. Do not lock fingers. Relax ankles.
Progression
Inhale, stretch up. Exhale, stretch head back (eyes looking as far
back as possible) and gently bring elbows toward each other. Hold.
Release
hands and arms and allow head to resume normal position before repeating
with opposite foot in front.
Avoid
Ever pushing head forward with hands, rocking up on toes or locking
knees.
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:
The Sandlers
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