Living with illness

Older Adults and Multiple Sclerosis

Posted by on Mar 25, 2012 in Living with illness | 0 comments

Marge had lived with multiple sclerosis for a decade before her symptoms deteriorated to the point where she needed to use a wheel chair. Although she lived alone with assistance from health aides, she was fortunate that she had many friends and didn’t fear isolation. She used a local van service and was able to get around her small city.

A few months after she began using her wheel chair, she had another exacerbation of symptoms, this time producing pain, fatigue, and some cognitive impairment. This time, she began to feel fear. Marge was fortunate that the friend she confided in, Julia, was as eager to think of actions that might help as she was interested in hearing out Marge’s feelings.

Julia suggested that Marge convene a group of her friends on the first Sunday evening of the month for pot luck dinner and healing conversation. Whatever that meant. They would experiment and see.

Curious, Marge agreed to propose the idea to a few people. She was thrilled and grateful that everyone she asked agreed to attend the “healing circle.”

The first Sunday of the next month, eight women gathered in Marge’s small living room, eating plates of delicious food they had brought to share. After dessert, Julia took the lead in forming the circle. She suggested they take a moment in silence. Marge then played a track from a music CD that she had found inspirational. Several women told anecdotes about friends of theirs who were struggling with illness and one woman read a poem. After an hour of conversation that had laughter as well as tears, Julia suggested that they all hold hands and send a current of love and support through the circle.

At the end of the evening, Marge was beaming. “I cannot thank you enough for coming,” she declared. Each one replied that she too felt lighter and better for having been at the healing circle.

The effect on Marge was profound. She replayed each monthly meeting and looked forward to the next. She enjoyed musing about and planning what she would bring to the group. And she especially loved talking to her friends about the healing circle and learning the ways the ripples extended far beyond her living room.

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Mid-Life Adults and Cancer

Posted by on Mar 25, 2012 in Living with illness | 0 comments

Don woke up to the sound of his two young children playing together downstairs in the kitchen. Their voices drowned out that of his wife’s, Karen’s, but he knew she was with them. Although he felt bad that pain from his stomach cancer made him unable to do the things he used to with his kids, he and his wife had figured out things he could do. He knew that in a few more minutes, both children would be in the room waiting for their special good-bye from Dad. When they returned from school, their first stop would be his room, to show him any papers from school. These were activities he could do, tired or not.

During the day, Don practiced the rhythmic breathing he had learned to do in the hospital. Not quite meditation, but something like it he was told. The slow breathing made him feel that every minute alive was precious.

The phone rang and he rolled over in bed to grab it. “Hello?”

“Hey, buddy. How are you today?”

It was Robbie. He had met Robbie at a support group for cancer patients sponsored by the hospital. After the eight session group, he and several of the members continued to check in with each other, usually every few days. He liked making the calls as much as receiving them. He had persuaded Karen to try a support group for partners of spouses with cancer and now she, too, wouldn’t miss a week.

These were such simple lessons about friendship and support, but without his experience with cancer, he and Karen might never have realized that community makes the unbearable bearable.

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Young Adults and Chronic Fatigue Syndrome

Posted by on Mar 25, 2012 in Living with illness | 0 comments

What is it like to live with an illness that has no known cause and for which there is no specific treatment? What does it mean to have an “immune system disorder” that may last for many, many years, realizing it will affect one’s daily life in countless ways?

Persons diagnosed with CFIDS, or chronic fatigue syndrome, are living with such an illness.

They often are barraged with advice – from doctors, parents, siblings, significant others, intimate friends, neighbors, and acquaintances. They are told there is nothing wrong with them. They are told to rest. They are told to start managing the stress in their lives. They are told to change their diet. They are given dietary supplements from herbs to enzymes. Mostly they are told to just get over it.

They rest. They do a bit better. They try to live a “normal” life. They get worn out. They get sick. And people want to know what’s wrong. “You look okay,” they say.

Chronic fatigue syndrome is a serious and complex illness. It is characterized by a disabling fatigue, flu-like symptoms, difficulty in information-processing and short-term memory, and problems with sleeping. More information is available at http://www.cfids.org

Treatment is tailored to the individual and only offers symptom relief. It usually includes lifestyle changes, more rest, less stress, change in diet, and minimal exercise. Due to a high sensitivity to medication, persons with CFIDS are usually not treated medically, and then only on a trial-and-error, low dosage basis.

There is current data that supports the notion that CFIDS is one of the most prevalent chronic illnesses of our time. For example, it is at least twice as common as multiple sclerosis. CFIDS most often affects white women between the ages of 20 and 45.

Listen to the experience of one young woman, diagnosed with CFIDS at the age of 23, having lived with it for the last four-and-a-half years.

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When A Child’s Friend Dies

Posted by on Mar 25, 2012 in Living with illness | 0 comments

Antonia, who is five years old, had a friend Sam who died last month. Sam, who was six, died following a freak accident at a park. Antonia told me that she wants “to help other children who had a friend who died.”

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Living with Illness. Possibilities for Change

Posted by on Mar 25, 2012 in Living with illness | 1 comment

Bad things happen to good people. People who become ill or disabled do not have to blame themselves. Even if you have contributed to your problem, for instance you smoked when your doctor told you not to and now you have emphysema, you are not a bad person. You were in the grip of a habit that was hard to break.

Let’s take smoking, for example. If there is blame to place, what about the government that gives tobacco farmers subsidies to grow their plants? Or the cigarette manufacturers who add substances to their product to make them more addictive? Or the advertisers who make smoking cigarettes look appealing? In most instances, individuals alone rarely cause their problems single-handedly.

Self-blame is a problem for specific reasons. Think about these questions:

  • Does feeling bad about yourself make it easier or harder to take care of yourself now?
  • Are you more or less likely to ask for help, if you blame yourself or think you are a bad person?

These are some approaches to living with illness that may make it easier.

  • Let people know. Do not isolate yourself.
  • Ask for help. Often people don’t know what they can do to help. Giving someone something specific to do can be helpful to them.
  • Find at least one person to confide in. Talking to a good listener may not make the illness go away, but it will help to feel less alone with it.
  • Get medical help. Don’t try to mange your problem on your own.
  • Get information to help you understand your illness or disability. Knowledge makes people feel more in control.
  • Find a support group for your condition in your community or on the Internet.
  • Reduce stress. This may seem impossible, but even reducing stress in one area can have a positive impact. You may need help in accomplishing this.
  • Eat a healthy diet and get enough sleep and rest.
  • Try meditation for stress, fear and pain reduction. Most medical centers now teach meditation for relief of physical and emotional pain.
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Living with Illness. Living with the Problem

Posted by on Mar 25, 2012 in Living with illness | 0 comments

Chronic illnesses are any health condition with long-lasting effects, generally those lasting more than three months. They are the leading cause of death in the world, according to the World Health Organization. Chronic illnesses account for about 70 percent of the deaths in the United States. Senior citizens have a 90 percent chance of having a chronic illness and a 77 percent chance of having two chronic conditions. Living with a chronic illness is easier when the patient follows some basic steps.

Doctor Selection

The patients’ relationship with their physicians is especially important in cases of chronic illness. These patients must trust their doctors completely in order to be completely honest with them. Patients with a chronic illness may need to look for another physician to find one they trust.

Support Network

A social support network is a group of close friends who can keep a patient with chronic illness from feeling isolated. Members of the support network need to be capable of accepting the truth about a patient’s condition, especially when the news is bad. Patients typically should avoid providing too much negative information to people outside their support network. These people will often have strong emotional reactions to this news, which can take energy away from the patient.

Patients with a chronic illness should accept offers of help from members of their support network. This will allow both parties to feel happy about the patient receiving support. It is especially important for these patients to be accompanied on a doctor visit. Patients often feel overwhelmed when visiting a doctor and a friend can be invaluable for recording important information from the doctor.

Health Protection

A healthy lifestyle is especially important for patients with a chronic illness. This includes getting proper nutrition, good exercise and plenty of sleep. These patients must also learn to recognize when they need to take a break from their daily activities. These signs can include a loss of concentration, muscular tension and irritability. Patients with chronic illness must learn to respect their limits to avoid a relapse in their condition.

New Standards

Patients with a chronic illness must set new standards that reflect changes in their condition. This step is essential for these patients to maintain their self-esteem. For example, a 40-hour workweek may no longer be a realistic standard for someone with a chronic illness. It is essential that these patients not define themselves by the standards they were able to meet when they were completely healthy. Adopting reasonable standards typically requires a good of courage.

Goals

Setting specific goals is essential for someone with a chronic illness. Goals help these people maintain their spirit by achieving a sense of accomplishment, even for small goals. Patients may still be able to meet their ultimate goals by changing the method of achieving them. For example, a woman with a chronic illness may still be able to have a child even though it may require an extended hospital before the birth.

This is part one in a three-part series on Living with Illness.

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