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Patient Information

Nobody wants to have a chronic or long-term illness. For some, changes due to illness can bring both physical difficulties and emotional distress. However, it is possible to live a healthy life while managing a chronic illness. Health is feeling well in body and mind, and a healthy life is one that seeks balance for both body and mind. Therefore, a healthy way to live with a chronic illness is to work at overcoming the physical and emotional difficulties that kidney disease can cause.  The goal is to achieve the greatest possible physical capability and pleasure for life.

The following hints and ideas are suggestions to promote a healthier way of living:

Learn about your illness:

You are the only one who lives with your illness daily   so…..
Observe your illness so that you can accurately report to your medical team

Manage your Medication:

Learn about what your medication is and what it is for
Imagine that the medication is helping you. Keep in mind why you are taking the medication

Learn to communicate with your Health Care team:

PREPARE for meetings/appointments (write it down if necessary); ASK your questions; REPEAT  the information you get so you know you have heard it correctly; TAKE ACTION or put it into practice

Eat healthy

Follow the instructions your dietitian gives you!

Sleep!

Quality & quantity have direct relationship to our mood and time for our body to heal

Finances/Work

Think about what changes you may need to prepare for or things you may need to gig around

Be Active

Exercise releases ‘happy hormones’ that have a big impact on how well we feel and how good we feel about our bodies

Stay involved

Keep up with friends, social clubs, work and activity. Your illness may not change your lifestyle that much and you will need the support and fun of the people and things that mean the most to you

Learn something new

Once you have ‘settled into’ the changes that your illness brings think about learning something new, either through books or an adult education course. Learning something new, for example a new craft or hobby, has a direct positive affect on our personal sense of achievement and can provide a new outlet for friendship, activity or creativity.

Talking to My Children or Grandchildren About My Illness

Your first reaction when you are trying to adjust to your illness is to protect your children from things that could upset them. Because of this it can be hard to know whether you should tell children about your illness or what and how much to tell them.

Even though you know your children or grandchildren best, you may be surprised at how well they deal with the news and detail of your illness and treatment. We cannot stop children from feeling sad at difficult news, but by giving them information and helping them understand their own reaction we can support them in their reaction to the news. Children can often ‘know’ that things are changing for a parent or grandparent without any news being given to them. For that reason it is important that they do not feel isolated by the lack of conversation around the changes that they see or hear about. Children who are included in what’s going on are less likely to have problems adjusting to your illness, though it may still be hard learning to adjust.

When should I tell the children/grandchildren?

Often there may not be a ‘right time’ to tell children. You may need to come to terms with the news yourself before you talk with your children. Children can feel more included in the treatment plan if they are informed in the early stages of the illness. A good time to talk with them is before some obvious change occurs, like significant fatigue, hospital admissions or Dialysis commencement

Who should tell my children/grandchildren?

In general it is easier if the information comes from someone who is close to the child, so you or your partner or a close relative.

How can I tell my children/grandchildren?

This can take some time and thought, and it can help to rehearse what you are going to say. Try to use the most clear and simple explanations possible, it can help to link the information with things they have already observed or been told.

What should I tell my children/grandchildren?

  • Use the correct words for the illness – e.g. Renal or Kidney failure, Dialysis
  • Explain how your health may be affected – e.g. tiredness, feeling sick sometimes, needing Dialysis
  • Give some info on how the treatment works in simple, clear language
  • Reassure them about their daily routine and that as a family you will all continue to  make each day as good as it can be

If you feel you would like help around talking with your children/grandchildren, then do ask for support from your Renal Social Worker.

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