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LIVING WITH CHRONIC ILLNESS

Redefining "normal"

For those of us living with a chronic illness, there can be many ups and downs. Nothing is as it once was, and "normal" no longer exists in our vocabulary. Maybe this presentation will help you to redefine the term "normal" and learn to live with your illness as best as you can.

If you've ever been on a walk in the woods, you know how varied the path can be — level areas covered with soft pine needles can give way to rocky descents or short climbs that require careful footing. In some ways, living with chronic illness is very much like going on a walk in the woods. You're never quite certain what lies ahead of you. 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
life.

Acute vs. Chronic

Most people are familiar with acute illness. An acute illness comes on suddenly and often has an identifiable cause. Generally, it's treatable —often with a return to normal health. And usually you're not sick very long. Some examples of acute illness are appendicitis, ear infection and pneumonia.

On the other hand, a chronic illness often begins gradually and may have several causes. Rarely is a chronic illness cured. Usually it persists for an indefinite time. Diabetes, heart disease and arthritis are examples of chronic illness.

Many factors can affect the course of a chronic illness, including heredity, lifestyle (stress, diet, exercise, etc.) and even environmental factors. As a result, it's difficult to predict how you may feel from day to day.

                Restoring a sense of control

Living well with a chronic illness begins with understanding your illness. What you know about your condition can make a difference in how you approach each day.

Start by asking your doctor for information. He or she may be able to recommend books or articles. Another resource is your local library. Contacting national organizations, such as the American Heart Association, the American Diabetes Association or the Lupus Foundation, may also help. There are many organizations out there, for many illnesses, so you should be able to find one that can help.

If it's appropriate, your doctor may suggest you take part in an education or rehabilitation program. There are a growing number of these programs for various illnesses.

Another useful information tool for you and your doctor is a medical diary. In it, keep track of your visits to the doctor — when and why. In addition, maintain a list of treatments and medications and any side effects. You may also want to include copies of your test results, as well as a record of symptoms, their severity and possible triggers.

Adjust accordingly

Living well with a chronic illness often involves making important lifestyle adjustments. One of the first things to consider is how you pace yourself. Adapting a moderate pace, keeping a regular schedule and getting adequate rest and exercise can help you better manage your illness.

Be wary of overextending yourself. Learn how to say "no." It's especially important to pace yourself on days when you feel energetic and may be tempted to overdo.

Other adjustments may include:


Taking medications regularly — Carefully follow your doctor's instructions on how and when to take your medications. Stay in close touch with your doctor on how your symptoms are affected by your medications and what side effects your experience.

Managing pain - Attitude, medication and therapy are keys to control

Eating properly — Depending on your illness, you may need to avoid some types of food and incorporate others in your diet. In addition, talk with your doctor about determining a healthy weight and ways to reach that goal.

Eating well when you don't feel well

Exercising regularly — Appropriate exercise, as prescribed by your doctor, is a vital tool in managing chronic illness. Regular exercise can improve strength and energy levels, as well as self-confidence. It also plays a role in lessening anxiety and depression, which can be associated with chronic conditions.

Emotional ups and downs

Living with a chronic illness can be a roller coaster of emotions. There are several ways you can help even out the ups and downs:


Maintain normal daily activities as best you can.

Stay connected with friends and family. Don't shut yourself away from the
world.

Continue to pursue hobbies you enjoy and are able to do.

If your illness impairs your ability to do things you enjoy, talk with your doctor about possible ways to get around the obstacles.

Keep in mind that your physical health can directly impact your mental health. Denial, anger and frustration are not uncommon when you learn life has dealt you something painful and unexpected.

At times, you may need more "tools" to deal with these or other emotions. Professionals, such as therapists or behavioral psychologists, may 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. Talk with your doctor about the route that might be best suited for you.

In addition, many chronic illnesses are associated with an increased risk of depression. This isn't a "failure to cope" but may indicate a disruption in the body's neurochemistry that can be helped with appropriate medical treatment.

Living with someone who's chronically ill

With longer life expectancy and smaller families, chances are greater than ever that you or an immediate family member will help care for someone who's chronically ill.

That role has its ups and downs. Here are some things you can do as a caregiver to help make your role more manageable:

Accept that the chronic illness may not go away.

Focus on aspects of well-being — such as activities and the person's feelings— rather than just physical health.

Be available and listen, focusing on positive changes.

Get involved together in productive, fun activities to distract 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.

Establishing a steady course

If you have a chronic illness, there's no denying that it affects your life. But how much you allow it to determine the quality of your life depends, to some extent, on the way you choose to live day to day.

I hope that this topic has given you some suggestions on how to live with a chronic illness. It might also be a good idea to pass this along to family members, spouses, and significant others.

From: Living with a chronic illness-Redefining "normal" (synopsis from 11/18) 

From Arthritis Net..... permission granted to forward and post on ACES.
The best bookholder I have found is a 'seated' teddy bear turned on its side. The arm and leg on the bottom hold and book which leans against the bears tummy. A light hold around a bear extremity will help hold the pages open. It's warm and cuddly with large 'grips'. And, if you like to read in bed, and you fall asleep reading, the book doesn't fall forward and hit you in the nose or you don't roll over and roll on something metal.

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Hope 

Hope and Illness: by Angie Cenneno copyright 6-99.
Illness is an introduction to the fragility and sacredness of life. With illness we learn we are not immune. Nor are those we love. We learn our sense of invulnerability is an illusion. Illness is the great equalizer. We come to understand that life and death are intimately and ultimately connected, for everyone. Illness comes with a formidable invitation to notice the sacredness of life. It is a wake up call to the preciousness, a call to notice the everyday, to be present "there" and "now," to place our lives in perspective to others and to our universe. It is a call to accept the place we have in infinity and eternity, to ask the "big" questions and enjoy the "simple" answers. To do so we must find a rightful place for the suffering, a perspective that allows room for hope.

Serious illness is a journey, a hopeful journey, with an unknown destination. In illness the dichotomies are vivid. Hope is the space between symptoms and diagnosis, between diagnosis and prognosis. It is the wrestling match between science and compassion; between body and spirit, between pain and relief. It is the dilemma between fearing to be alone and hungering for privacy. Hoping is waiting - for test results, waiting for appointments, waiting for the organism to heal and the spirit to rekindle. Hoping is walking the line between the constant probing and invasions and declaring "No more," not now.

The hope for survival is not the only hope; many days not even the overriding hope. The hope is not to be "in-valid." Hoping is knowing someone is making an effort to help, that family is never far away, that the system cares, that what happens is the best of technology and the best of humanness. Hoping is being attended by people who understand caring makes a difference, an immeasurable difference.

Hoping is being treated, not as another case of a particular disease, but as a person, by people who understand this could happen to them. It is knowing there are no secrets and being a partner on the treatment team. Hoping is being encouraged to do as much as possible for one's self. Hoping is trying again, moving against the odds, knowing everything that can be done is being done, knowing the caring will go on when the limits of science are reached.

Hoping is denying the statistics, reaching beyond the traditional, keeping open the possibility of being the exception. Hoping is listening to the unconscious, having dreams in the world of sleep and dreams in the world of consciousness, of wondering if there are miracles, of being fascinated with the little miracles, the words that heal, the memory that lets us forget. Hoping is having passion for life. noticing life, wanting life, inching towards life, being willing to embrace life despite the risks. Hoping is recognizing death is not the enemy, never living is.

The suffering humbles us. The hoping takes us forward. We come to understand that we are among many who become ill, among many who hurt and fear, and who need, and who cannot explain the unusual experiences we come to trust, the experiences for which we have no words. There is a knowing which accompanies suffering; a knowing that emerges from deep within us, that speaks from another dimension of life.

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This page was last updated on 03/16/2005 .
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