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In some ways, living with chronic illness is very
much like being trapped in a maze - you're never
quite certain what lies ahead of you; so, it's easy
to lose your perspective. You wander the same path
over and over again - totally lost and bewildered.
You appear to be alone with no one to show you the
way out. There are many questions, but few answers.
Which is the most effective treatment ? Who are
the best doctors ? What options can be utilized
so that the way out can be found ? You need to find
your own path, and confronting your illness is a
process that must be worked through . This process
takes time and effort. If you live with a chronic
condition, how you view the path you're on and decide
to manage your day-to-day situations can greatly
affect your quality of your life.
Acute vs. chronic
Most people are familiar with acute illness, such
as appendicitis, typhoid fever or pneumonia, which
comes on suddenly and often has an identifiable
cause. Generally, such an illness is treatable.
Often the individual regains normal health, and
usually does not remain sick very long.
On the other hand, a chronic illness often begins
gradually and may have several causes. Also, rarely
is a chronic illness cured, and it usually persists
for an indefinite period of time. Diabetes, heart
disease and arthritis are examples of chronic illness.
Many factors can affect the course of a chronic
illness, including heredity, lifestyle (e.g., stress,
diet, exercise) and even environment. As a result,
it's difficult to predict how you may feel from
one day to another.
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Restoring a sense of control
Many factors can affect the course of a chronic
illness, including heredity, lifestyle (e.g., stress,
diet, exercise) and even environment. As a result,
it's difficult to predict how you may feel from
one day to another.
The process of living well despite suffering from
a chronic illness begins with understanding your
illness. What you know about your condition can
make a vast difference to how you approach each
day. You can start by collecting information about
our illness - and remember that there is a wealth
of information out there ! (See chapter 28).
Another useful information tool both for you and
your doctor is a medical diary. In this diary, keep
track of your visits to the doctor, noting down
meticulously when and why. In addition, maintain
a list of treatments undertaken, along with the
following details: side effects; copies of your
test results; and a record of symptoms, their severity
and possible triggers. This diary will not only
serve as a useful record of your illness, but will
also provide your doctor with valuable diagnostic
clues, which may help him to tailoring your treatment
appropriately. Many people also find that the very
act of recording their feelings and emotions in
a different section of the diary can be therapeutic
as well, as it allows them to ventilate your feelings!
Attitude by itself cannot cure a chronic illness,
but cultivating a positive outlook and learning
self-management techniques can make it much easier
to live with. No matter what the ailment, confidence
and determination will help you to maximize your
health.
Living well with a chronic illness often involves
making important lifestyle adjustments. One of the
first decisions to be taken is to consider how you
should pace yourself. Adopting a moderate pace,
maintaining a regular schedule and getting adequate
rest and exercise can help you in managing your
illness more effectively. Be wary of overextending
yourself. Learn how to say "no." It's
especially important to pace yourself properly on
days when you feel energetic and may be tempted
to overdo things.
Other precautions or adjustments include the following
:
Taking medications regularly : Follow your
doctor's instructions carefully on how and when
to take your medications. Stay in close contact
with your doctor, especially when you start taking
a new medicine, so that you can let him know how
your symptoms are affected and what side effects
you experience.
Eating properly :
Depending on your illness, you may need to avoid
some types of food and incorporate others in your
diet. In addition, consult your doctor about determining
a healthful weight and ways to achieve that objective.
Exercising regularly :
Appropriate exercise, as prescribed by your doctor,
is a vital tool in managing chronic illness. Regular
exercise can improve your strength and energy levels,
as well as self-confidence. Such activity can also
play a role in lessening the anxiety and depression,
which is often associated with a chronic illness.
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Emotional ups and downs
Living with chronic illness can give rise to a roller-coaster
of emotions. There are several ways in which you
can help even out the ups and downs:
- Maintain normal daily activities as best as
you can.
- Stay in touch with friends and family.
- Continue to pursue the hobbies you enjoy without
overexerting yourself.
If your illness impairs your ability to perform
activities that you enjoy, check with your doctor
about possible ways to get around the obstacles.
Keep in mind that your physical health can directly
impact your mental health. Men may feel guilty about
not being able to work, perform sexually, or provide
for the family, while women may feel guilty about
not being able to care for children or the husband.
Negative emotions such as denial, anger and frustration
are not uncommon when you learn life has dealt you
something painful and unexpected. In addition, many
chronic illness are associated with an increased
risk of depression. Such a state of affairs does
not mean a 'failure to cope' but may indicate a
disruption in the body's neurochemistry. Such as
disruption can be rectified by appropriate medical
treatment.
At times, you may need more "tools" to
deal with these negative emotions. Professionals,
such as psychotherapists or psychologists, can help
you put things in perspective. They can also teach
you coping skills, including relaxation techniques,
that may be helpful. Sometimes, a support group
is the best answer. Again. your doctor is the ideal
person to suggest the best course in your specific
case.
Living with someone who's
chronically ill
Nowadays, with longer life expectancy, chances are
greater than ever that you will need to help in
caring for someone who's chronically ill. Remember
that chronic illness affects whole families as well
as the patient, especially if the illness is terminal.
Family members may find themselves in unfamiliar
or undesired roles, and providing 24-hour nursing
care can prove to be a major burden. They can become
isolated from social networks as they struggle to
care for a sick loved one. Stress can break down
close relationships, and a patient's inability to
take care of himself often causes guilt, shame or
irritation.
Indian society expects the spouse and children of
the chronically ill to always be patient, kind,
supportive and understanding - a tall order indeed!
Interestingly, researchers have found that a spouse's
attitude affects the suffering of someone with a
chronic illness. When the spouse is supportive,
it is easier for the sufferer to be positive and
optimistic. By contrast, those with critical spouses
are more likely to feel hopelessly victimized by
their illness. A families' efforts to downplay the
severity of an illness is likely to make the sick
member worse, whereas openness, acceptance, and
compassion have a positive effect. Here are some
aspects on which you can focus as a caregiver to
help make your role more manageable:
- Accept the reality that the chronic illness
may not go away.
- Focus on the signs of well-being - such as
activities and the person's feelings rather
than on just physical health.
- Be readily available and listen, emphasizing
positive changes. IGet involved together in
productive, fun-filled activities to distract
the patient from the illness.
- Encourage independence while maintaining as
"normal" a family life as possible.
- Take care of yourself, and seek help when
needed. Look for organizations that offer support
for caregivers.
If you are a victim of a chronic illness, there's
no denying the fact that it affects your life adversely.
But how much you allow it to determine the quality
of your life depends, to some extent, on the way
you choose to live one day to the next. It's true
that a chronic illness does not 'go away', but you
can learn to cope with it and lead satisfying and
a happy life!
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