Personal health log. Planning for good and bad days when you live with chronic illness.

 

Like many people of middle age or older, I live with more than one chronic condition— a health problem due to disease, injury, or complication of earlier medical treatment that cannot be cured but can be treated. My personal list includes migraine headaches, asthma, seizures, and depression. Some chronic conditions disappear completely for periods of time (a remission) and then come back (a relapse). Others never go away completely; you learn to live with good days and bad days, but accept there will almost certainly be some symptoms every day. As a pessimistic but not wholly unrealistic friend once said, if the disease doesn’t wear you down, drug side effects will.

Years ago I was in a support group for people living with epilepsy, and our moderator was a professional social worker who herself had seizures. She emphasized that we should give ourselves permission to treat ourselves on bad days, whether they were bad due to seizure activity or anything else. Her one rule was that our treat should not be a risky behavior or indulgence in any addiction or bad habit we had kicked (alcohol, drugs, handfuls of sweets, other forms of binge eating).

Most of us were not working or were under-employed, a state sadly common among people living with a serious condition, and she said a splurge does not need to be expensive. Since then, I have learned that her advice is sound. Treats do not need to be expensive: I love to take a walk with a camera and simply shoot what I see, a friend enjoys a small bouquet of fresh flowers. Joseph thinks mylar balloons are wonderful.

Discover what pleases you when you are down. Consider actually writing a menu of easily available options that you can check on bad days. I have endometriosis, a chronic condition in women that can cause severe pain just before and during menstrual periods. I found (at a time I was trying to spend as many hours as possible writing at the computer) that it was a luxury to put a pillow on the couch, get under a warm blanket, and just watch TV. The relaxation and pleasure was increased by one dog at my feet and another on the floor.

If you have any condition that may suddenly get worse to the point you need to contact your doctor or clinic, keep a sheet with the needed contact information on your refrigerator or somewhere else that is clearly visible and easily accessed. Know how to get emergency help via telephone or other means.

If you are vulnerable to falls, consider getting one of the services that gives you a small monitor to wear: If you fall or cannot get to a telephone, you press a button and a signal is received by the company, which can get help to you. I was probably one of the last people in the U.S. to get a mobile phone, but if you have one, keep it with you all the time. Not only will you be able to receive (or ignore) all your calls, but you will have it handy if you need it in an emergency. Make sure the telephone numbers for people you want to contact are programmed into the phone.

The person you contact first may not always be your doctor. Right now I am living with depression, and I have a short list of people who will take a call at any time if I feel truly alone or hopeless. Similarly, I know I am on the list of some people acting as caregivers to a relative with a major or terminal illness, as well as people who have chronic illness or are going through a very rough time in life.

Finally, it is just as important if not more so to plan how to enjoy good days. When I first learned I had seizures, I noted each one on a calendar so I could give the log to my neurologist at appointments. I learned to note special days and events as well. When I reviewed the calendar log before each doctor’s appointment, I became aware of how well (or poorly) my seizures were controlled, but I also smiled at the notes on special days, days I walked in a shopping mall enjoying Christmas decorations and music by a small group of singers, days I woke early and went outside to enjoy the sunrise and early morning.

No matter how old you are, no matter how good or poor your physical health, you will have good and bad days. Treasure good moments, and they will never really leave you. Note bad ones if it is sensible to do so, but let the emotions of bad days — frustration, bitterness, feeling of inability to do anything important— drip away at night.

Each day ends, and a new one comes. Be prepared to greet the new day with hope and to make the most of it, or, if need be, endure it and learn from it. There is so much in life that cannot be cured, cannot be undone, but we can heal. We can manage our medical problems so that they become part of life but do not define it, do not define us. I am a person, a wife, a mother, a writer. Only secondarily am I a person with a history of a major head injury and multiple medical problems. I will always be me, the sum of all my days, all my dreams, all the people I have loved. Make sure, no matter the state of your body, that you are always you.

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3 Responses to Personal health log. Planning for good and bad days when you live with chronic illness.

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