Maintaining Quality of Life

Thoughtful young woman with colorful windmill toy sitting on the beach in the evening

Do something every day that makes you happy

Being diagnosed with a chronic disease can feel like a blow in the stomach. It is normal to experience a range of emotions in the wake of such a diagnosis and you may feel you’re on a roller coaster of emotions. Accepting one day, and angry the next.

However, pulmonary alveolar proteinosis (PAP) is not the end. There are coping strategies that will help you maintain your quality of life.

Read more about the psychological dimension

Face your diagnosis

Some days you may be tempted to pretend you never received your diagnosis. However, facing your diagnosis head on is the best way to cope.

But how does one face a diagnosis head on? According to the American Psychological Association (APA) a good place to start is by writing down all of your questions and taking them to your physician to discuss. Ask your doctor what specific steps you can take to optimize your health. Accurate knowledge can help you feel empowered.

You may also want to involve your partner or other relatives in such a process.

Read more about accepting your “new identity”

Managing life

PAP patients are not able to control their disease. Unlike chronic life style diseases such as diabetes you can’t really change the course of your condition. But you can still manage the elements in your life that are within your control.

You can choose to eat healthy meals, you can choose to spend less time with people who aren’t supportive. You can choose to take up a hobby, you can choose to stop smoking, or you can choose to spoil yourself at least once a week.

If you feel alone with this rare disease that most people have never heard of, it may help to remind yourself  that PAP patients from all over the world have found ways to cope, to not let the disease take over the control of their lives. If they can do it you can too.

Get tips to everyday life

Letting go to hold on

It goes without saying that it can be extremely emotionally stressful to be diagnosed with PAP or any other severe chronic disease. Try sorting your daily routines and let go of unnecessary obligations. It may contribute to a simpler life that puts less strain on you.

You may want to let go of friends who are not supportive of you and your situation. Instead ask your remaining friends and family for more help. You may be able to build a strong support network that you can rely on, and communicate with them about how they can best help you manage your disease.

If you focus on the quality in your life, you may look at your present situation in a different light.

It can help a lot to talk to people in the same situation as you. PAP Life here on the site is a community where people with PAP and their relatives can share worries, experiences and everyday life with others who understand their situation as they too have PAP.

The power of communication

Illness can be stressful for an entire family and it’s not unusual for couples to experience strain on their relationship. Try to see things from the other’s perspective and keep the lines of communication open. If you have children, plan for some alone time with your partner.

Involve others in your thoughts and worries can help a lot. It may help you not to feel alone with your disease. And it can help your relatives to better understand your needs and how they can help you.

Another good thing you can do to keep your relationship healthy is to encourage your partner to make time to care for himself or herself, especially if he or she is your primary caregiver.

It is also worth reminding yourself that children are relatives too. Regardless of age, they perceive the severity of your condition and are just as affected by it as adults.

Your PAP Plan

Most people have goals. Something they want to achieve or do in their lives. Get an education, get an interesting job, have a family. Visit the Taj Mahal. When diagnosed with a chronic disease, however, these goals may suddenly seem unreachable.
But you needn’t let go of your dreams. Instead of jumping right to the chase in one great leap, you may just want to take one small step at a time. Regard each step as a subsidiary goal. And every time you reach a subsidiary goal – celebrate. Celebrate that you are now one step closer to your main goal. When you celebrate the successes on the way to your big goals in life the final target seems easier to reach. And you are more likely to get there.

You can also try to write down your dreams– both the major dreams and the smaller steps to get there. You can call it your PAP – your Personal Ambition Plan. Each time you take a step you can tick it off in your plan. The more specific and attainable your Personal Ambition Plan is the more likely you are to get there.

How to stay in control of your life

  • Accept your limitations – there are things that you cannot do, and it is okay
  • Stay positive and focus on your possibilities –– think of all the things that you can do
  • Listen to your body – respect the signals from your body and take a rest when you need it
  • Keep dreaming – stay curious with a lust for life, remember that most things are possible one way or the other
  • Be stubborn – insist on being in control making PAP a natural part of you, but not the whole of you
  • Ask for help – ask relatives or maybe a housekeeper to do the things that exhaust you. Spare your energy for the things that matter
  • Divide your tasks into subtasks – when you split up your tasks they become less exhausting
  • Do things you love – try to do something every day that makes you happy, eg. listening to music, being outside, play with your children or talk to friends

Read about how planning can help your everyday life

This website is sponsored by Savara Pharmaceuticals