Tips for Pacing Yourself While Living with Pulmonary Fibrosis

Tips for Pacing Yourself While Living with Pulmonary Fibrosis

Learning to live with a life-threatening, chronic lung disease as a young adult is the hardest thing I’ve ever done.

Idiopathic pulmonary fibrosis (IPF) is characterized by irreversible and progressive scarring of the lungs, known as “fibrosis,” which ultimately diminishes a person’s ability to breathe. While the prognosis of IPF was previously only three to five years, this estimate is now considered to be outdated, and experts say that the survival rate is unpredictable.

Since my diagnosis of IPF three years ago, I’ve had to learn to do many things differently. Thankfully, I can still confidently say that while many things are harder for me, nothing is entirely impossible yet. I’ve recognized the importance of pacing myself when it comes to both physical and mental activities.

I was a very active and busy person before my diagnosis, so this lesson hasn’t come easily to me. But I know that when I don’t heed my body, it forces me to rest — sometimes I get sick and require hospitalization.

While I’ve gotten better at pacing myself, maintaining balance is an ongoing challenge for me. I don’t know if I will ever master it, but I’ve picked up some tips along the way. I am privileged to know many other people with IPF through the PF News Forums and other online communities, so I thought I’d share my advice in the hope that it helps others.

Connect with other people and share tips on how to manage PF in our forums!

Following are some of my tips to help you pace yourself:

  • Take frequent breaks: While this may seem obvious, patients with IPF often consider only the physical effects of the disease. I’ve written about my mental fatigue, which happens as a result of chronic under-oxygenation and physical exhaustion. When I’ve been working longer hours than I should, I notice that it affects my mental clarity and ability to problem-solve and plan various tasks. Taking frequent breaks is essential for my mental health as well as my physical well-being.
  • Reframing language: A work colleague who holds the position of organizational development lead recently discussed the connotations of the word “try.” They asked, “How often do you use this word? Did you know that from a professional development perspective, the word ‘try’ indicates that completion of the task is unlikely?” I use “try” all the time, and I had thought that others believed me when I told them that I would try to do something even when I knew it might not be possible. This experience has made me more aware of the words that I use and determined to commit to only those things that I know I can do. For example, I use statements such as, “I will complete that task,” instead of, “I will try to.”
  • Set realistic expectations: My close friends and family describe me as a classic overachiever. I have high expectations of myself, and I believe that others do as well. However, I now have physical limitations and need to be realistic with myself about what I can manage. I also have to communicate openly and honestly about my capabilities to help others set reasonable goals for me.
  • Learning to say no: This is a work in progress for me. I don’t like to say no due to my fear of missing out. Turning down something that is unimportant helps to conserve your energy for meaningful activities. If you fear missing out on an opportunity, I suggest saying, “Not right now,” instead of declining. Putting something off allows you to avail of the opportunity at a later time while prioritizing what you need to take care of at the moment.
  • Asking for help: My lung disease will inevitably progress, and some tasks will become impossible for me to do. When this happens, I will have to ask for help to pace myself and conserve my energy for carrying out the essential tasks.

Do you have any other tips for pacing yourself as a patient with IPF/PF? Please share in the comments below. 

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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.

Thanks for stopping by my column! My name is Charlene Marshall and I was diagnosed officially with Idiopathic Pulmonary Fibrosis (IPF) on April 7 2016 after 13 months of various tests, hospitalizations and misdiagnoses, such as bronchitis and asthma. Due to my age, the specialist disclosed that he was unsure how the IPF would manifest itself in terms of progression, and whether it would be fast or slow and what the course of my illness might look like. Not much has changed since then, meaning there is still a lot that remains unknown, which is largely due to my age and how “rare” it is for someone under 30 to receive a diagnosis of IPF. That being said, a lot has changed for me in the time since diagnosis and I am looking forward to sharing some of those changes with you through this online platform, and I invite you along for the ride! Throughout this column I intend to chronicle the experience of living with an invisible, yet fatal disease as a young adult and share some stories about how IPF has impacted every aspect of my life, both good and bad, thus far. I plan on highlighting the challenges (and where I can, the positives…) that come with living with IPF and the impact on social and intimate relationships, finances, family dynamics, facing mortality, infertility, travelling, medication side effects, career goals and so much more as it arises for me as a “new” patient. I hope others’ with similar experiences will reach out as no story trumps any other, nor should any go unheard. For now, let me leave you with some personal details about who I am, outside of my IPF diagnosis. I grew up in a small town in south-western Ontario and still live within Ontario, although in a much bigger city. My favorite sport is/was underwater hockey (yes, it is a thing: look it up on YouTube), I love working with people, I work full-time in the Social Work/Social Services field, I am an avid learner filled with heaps of curiosity for the world, which lead me to start my Masters Degree in 2014. I am in the last few months of my Masters Degree and am looking forward to an upcoming trip to Australia more than I’ve looked forward to anything before. Welcome to the shambles and chaos that is my life!
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Thanks for stopping by my column! My name is Charlene Marshall and I was diagnosed officially with Idiopathic Pulmonary Fibrosis (IPF) on April 7 2016 after 13 months of various tests, hospitalizations and misdiagnoses, such as bronchitis and asthma. Due to my age, the specialist disclosed that he was unsure how the IPF would manifest itself in terms of progression, and whether it would be fast or slow and what the course of my illness might look like. Not much has changed since then, meaning there is still a lot that remains unknown, which is largely due to my age and how “rare” it is for someone under 30 to receive a diagnosis of IPF. That being said, a lot has changed for me in the time since diagnosis and I am looking forward to sharing some of those changes with you through this online platform, and I invite you along for the ride! Throughout this column I intend to chronicle the experience of living with an invisible, yet fatal disease as a young adult and share some stories about how IPF has impacted every aspect of my life, both good and bad, thus far. I plan on highlighting the challenges (and where I can, the positives…) that come with living with IPF and the impact on social and intimate relationships, finances, family dynamics, facing mortality, infertility, travelling, medication side effects, career goals and so much more as it arises for me as a “new” patient. I hope others’ with similar experiences will reach out as no story trumps any other, nor should any go unheard. For now, let me leave you with some personal details about who I am, outside of my IPF diagnosis. I grew up in a small town in south-western Ontario and still live within Ontario, although in a much bigger city. My favorite sport is/was underwater hockey (yes, it is a thing: look it up on YouTube), I love working with people, I work full-time in the Social Work/Social Services field, I am an avid learner filled with heaps of curiosity for the world, which lead me to start my Masters Degree in 2014. I am in the last few months of my Masters Degree and am looking forward to an upcoming trip to Australia more than I’ve looked forward to anything before. Welcome to the shambles and chaos that is my life!

2 comments

  1. Estrella says:

    Im glad i came accross your article. I was diagnosed of pulmonary fibrosis in 2016 too thru an xray for pulmonary clearance for hysteroscopy. A pulmoary dr diagnosed me as having a minimal tb and immediately prescrived me a 6 mths medication but some Pulmonary drs shrugged it off as just an ordinary scarring. I have now a permanent pulmonary dr. She diagnosed me as having asthma but still believed I have pulmonary fibrosis as seen on my chest xray. I am using seretide 2xday as maintenance and ventolin inhaler or sometimes nebule when i have asthma attacks and other anti allergy/anti asthma oral tablets. I want to get in touch with people of the same health problem as i do have for others who dont have pf can not relate what i feel and what im going through. I hope i can be given some tips from others too on how to cope/ manage fb.evwn if i am already 68 yrs old i still want to live longer to be able to see all my grandchildren grow up into responsible adults. Pls include me for any more tips you may have. Thank you.

    • Charlene Marshall says:

      Hi Estrella,

      Thank you so much for reading my columns and getting in touch via the comments. So sorry to hear of your diagnosis, and the runaround that it took for you to get some answers. Having our disease shrugged off as asthma happens a lot and it is so difficult! In terms of wanting to get in touch with others living with IPF, have you joined our forums yet? You can here for free: https://pulmonaryfibrosisnews.com/forums/ … it is a wonderful community of people who are so helpful when it comes to questions/suggestions/advice. Feel free to join us there!
      Kind regards,
      Charlene.

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