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Give Yourself a Little Love

Home care can disrupt your sense of normalcy. It’s normal to feel upset about being on home IVs or using oxygen. These are reminders that CF is progressing. You can also feel anxious and wonder if the treatment will work this time.

During these times, stay in the moment. Remember that some people with CF use oxygen, tube feeding or BiPAP® (positive pressure ventilation) only during exacerbations. Also, many people with CF do regular IV therapy for decades. Home care is part of your long-term investment in health.

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Home Care Mantras

“This, too, shall pass.”

“This is nothing compared to the alternative.”

“I am the master of my fate: I am the captain of my soul.” — Invictus, William Henley

“A stitch in time saves nine.”

“Start by doing what's necessary; then do what's possible; and suddenly you are doing the impossible.” — St. Francis of Assisi

 
Here are a few more helpful reminders to ease your stress:
  • Physical devices (like oxygen by nasal cannula, an accessed implanted port that’s accessed, or a G-tube button) can take some adjustment. But just think: they are helping you live longer and better.

  • You’re in serious fight mode during home care. Charles Dickens wrote, “It was the best of times; it was the worst of times.” Your CF fight is tiring and unwanted, but these are the times when you may notice silver linings: you can explore your inner strength and spirituality, gain confidence in your abilities and cultivate loving, compassionate relationships, so you don’t feel like you’re all alone.

  • Allow yourself to feel sad, angry, fearful, frustrated, bummed out, even sorry for yourself. Those are real feelings, and they are normal, especially now that you are required to do even more at home. It helps to talk with those around you about how you’re feeling.

  • Doing home care is very hard work. Try to focus on one day at a time. Commend yourself for being such a strong, bright, organized person. Most healthy people can’t handle what you are managing!

  • Practice gratitude when you are using home care. You are both caregiver and care-receiver: thank your higher power for the chance to get healthier at home, for the technology we have and for your own abilities.

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Updated 8/7/13

The Cystic Fibrosis Foundation is an accredited charity of the Better Business Bureau.