Treating one’s self with tender care is especially important to pulmonary fibrosis patients and their families. Medical tests, clinic visits, long-term illness management, and a shortened lifespan are difficult, unpleasant, and stressful experiences. We continue to grieve and adjust as our lungs worsen. It is important to respond to ourselves with kindness and realize that we are not alone in our struggles.
Practicing self-care has made a huge difference in my life and my ability to navigate this very difficult illness. Self-care is essentially listening and responding to bodily and emotional needs in healthy ways. It really helps when I take practical steps to care for myself, especially during difficult medical procedures and testing.
I’ve been going through lots of medical tests lately and have had plenty of opportunities to practice self-care. Following are some ways I’ve cared for myself during this period.
Pulmonary function tests
Going through this test is exhausting and makes me cough a lot. I tell my healthcare provider administering my test about this and ask that a few glasses of water be on hand for me to sip between tests. This always helps me calm my cough.
Going through procedures
Hospital rooms are often cold during procedures because low temperatures slow the rate of bacterial growth. Don’t hesitate to ask for warm blankets if you are cold.
Getting an IV
Recently, I’ve had an easier time getting IVs than I used to. Maybe the nurses have improved their techniques. Back when it was more difficult, I insisted on having a numbing agent applied before the nurse inserted the IV. Most nurses were happy to do it, but some gave me a hard time. I insisted anyway.
When you’re stressed out
I recently had to have a stent put in during a right heart catheterization. It was a difficult process. During the procedure, a nurse asked me questions about my life to distract me. This was not helpful to me. I told her, “I know you are trying to help, but trying to answer your questions makes it harder for me. I do better just focusing on taking deep breaths to calm myself down.” She understood. It really helped to explain what I needed. Having a nurse’s distractions may be the best strategy for you. There is no right or wrong; there is only what is and isn’t helpful to you.
When you’re hospitalized
I had to unexpectedly stay in the hospital overnight when I had the stent put in. I asked my husband to bring my iPad so I could read and headphones so I could enjoy TV and music. I also asked him to bring my phone charging cord, ChapStick, and cough drops. I forgot to ask him to bring a toothbrush, toothpaste, and a comb, so I asked the nurse for those. Being hospitalized is hard, so we need extra comfort and self-care. Always bring items that will help you get through this difficult time. Next time, I’m going to pack a stuffed animal to hug, too!
Have a good cry
Medical testing can be so stressful and difficult. Sometimes it helps me to release stress by having a good cry! I always feel better afterward.
Plan something fun or nurturing after the tests
I always like to have something nurturing following tests, like a favorite meal, movie, soothing bath, or massage.
I’d love to hear self-care tips from you!
There is so much we can’t control when diagnosed with pulmonary fibrosis. What we can control is how we care for ourselves. I hope my column gives you some ideas for self-care when going through medical testing and other challenges.
How do you care for yourself during medical testing? How has it helped? Is it hard to ask for what you need?
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Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.