LIVING WITH A CHRONIC ILLNESS – WHAT DOES THIS ACTUALLY MEAN?…

What does living with a chronic illness actually mean?

A chronic illness is an illness that is persistent and long lasting. It is a permanent illness/condition that may not be life threatening in the foreseeable future, but it’s something you will have to suffer from and live with. The chances are there is no cure for it but you will control it with a cocktail of remedies from drugs to alternative therapies.

Some chronic illnesses get worse over time, and others come and go over months or years. There are lots of different chronic illnesses, and each has different causes and symptoms. Some examples are:

  • epilepsy
  • asthma
  • cystic fibrosis
  • cancer
  • diabetes
  • depression and other mental health issues
  • Fibromyalgia

Chronic illness can also influence your ability to work. Morning stiffness, decreased range of motion, and other physical limitations may force you to change your work activities and environment. A decreased ability to work may also lead to financial problems.

As you learn more about your illness and how to take care of yourself, your feelings may change. Fear or shock may give way to anger because you have an illness. You may feel sad or depressed because you may not be able to live the way you used to live.

Chronic or long-term illness and its treatment pose special problems. You need to learn how to:

  • live with the physical effects of the illness
  • deal with the treatments
  • make sure there is clear communication with doctors
  • maintain emotional balance to cope with negative feelings
  • maintain confidence and a positive self-image

When you’re living with a long-term condition, it can be helpful to learn everything you can about your symptoms and treatment options. Ask your doctor specific questions about your condition, but don’t stop there.

Your local library and patient associations for specific conditions are excellent resources for increasing your knowledge base. You can also find information online, although some sources are more accurate and reliable than others. Join a support group either online or at your local hospital. Support groups can help in so many ways that it’s definitely worth finding one for your condition.

Here are 10 helpful strategies from Harvard Health for coping with a chronic condition.

  • Get a prescription for information. The more you know about your condition, the better equipped you’ll be to understand what’s happening and why. First direct your questions to your doctor or nurse. If you want to do more in-depth research, ask them about trusted sources of medical information on the Web.
  • Make your doctor a partner in care. We’d put this one more bluntly: Take responsibility for your care, and don’t leave everything to your doctor. One way to do this is to listen to your body and track its changes. If you have hypertension, learn to check your blood pressure. If your heart has rhythm problems, check your pulse. For heart failure, weigh yourself every day and chart your symptoms. This kind of home monitoring lets you spot potentially harmful changes before they bloom into real trouble.
  • Build a team. Doctors don’t have all the answers. Seek out the real experts. A nurse might be a better resource for helping you stop smoking or start exercising. You’ll get the best nutrition information from a dietitian.
  • Coordinate your care. In an ideal world, the specialists you see for your heart, your diabetes, and your arthritis would talk with each other every now and then about your medical care. In the real world, this doesn’t usually happen. A primary care physician can put the pieces together to make sure your treatments are good for the whole you.
  • Make a healthy investment in yourself. Part of the treatment for almost any chronic condition involves lifestyle changes. You know the ones we mean — stopping smoking, losing weight, exercising more, and shifting to healthier eating habits. Although these steps are sometimes relegated to the back burner, they shouldn’t be. The people who make such changes are more likely to successfully manage a chronic condition than those who don’t. Investing the time and energy to make healthy changes usually pays handsome dividends, ranging from feeling better to living longer.
  • Make it a family affair. The lifestyle changes you make to ease a chronic condition such as high cholesterol or heart disease are good for almost everyone. Instead of going it alone, invite family members or friends to join in.
  • Manage your medications. Remembering to take one pill a day is tough; managing 10 or more is daunting. Knowing about the drugs you take — why you take them, how best to take them, and what problems to watch out for — is as important as learning about your condition. Talking with your doctor, nurse, or a pharmacist can put drug information into perspective.
  • Beware of depression. Dark, dreary moods plague a third or more of people with chronic diseases. Depression can keep you from taking important medications, seeing your doctor when you need to, or pursuing healthy habits. Read up on the signs of depression. Let your doctor know if you think you’re depressed or heading in that direction.
  • Reach out. Doctors, nurses, and other health care professionals aren’t always the best reservoir for information about what it’s like to recover from open-heart surgery or live with heart failure. To get the real scoop, look for a support group in your area and talk with people who have been through what you are facing.
  • Plan for end-of-life decisions. If the diagnosis of a chronic condition, or life with one, has you thinking about death, channel those thoughts to the kind of care you want at the end of your life. Spelling out whether you want the most aggressive care until the very end, or whether you’d prefer hospice care and a do-not-resuscitate order, can save you and your loved ones a lot of confusion and anguish later on.

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SEPTEMBER #PAIN AWARENESS MONTH…

The first Pain Awareness Month was held in 2001 and since then the event has gone from strength to strength – Around 75 million Americans are suffering pain and it’s time to do something about it.  Awareness will be raised by the American Pain Foundation Action Network to this huge problem so that politicians are focused on the need for new research and treatments. The month also ties in with National Invisible Chronic Illness Awareness Week.  More suffers will have the chance to voice their pain via blogging and virtual conferences. The key to raising awareness is to get involved. There are many things that you can do to help promote Pain Awareness Month. Talk with Friends & Family: Let them know that September is Pain Awareness Month. “Like” the ACPA on Facebook. Encourage your friends to do the same. Everyone who lives with chronic pain—or cares about someone who does—is different. But at the same time, we all have common interests. It is a kind of community and deserves to have their voices heard. Partners for Understanding Pain represents a comprehensive network of resources and knowledge about issues in pain management. Pain Awareness Toolkits provide information for working collaboratively with healthcare professionals, consumer and professional organizations, journalists, community leaders, and elected officials to ensure that those who suffer from pain have access to appropriate and effective pain therapies. At the moment it is based around the website American Chronic Pain Association and not in the UK but that doesn’t mean UK sufferers cannot help to promote Pain Awareness Month.