A Powerful Trio for Managing Pulmonary Fibrosis

A Powerful Trio for Managing Pulmonary Fibrosis

Managing a chronic illness is not for the faint of heart. Learning to live with idiopathic pulmonary fibrosis (IPF) is the hardest thing I’ve ever done. I applaud my colleagues at BioNews Services and the friends I’ve made around the world who share their stores and advocate for others. We are stronger together.

An advocate in the IPF community recently asked how I manage my daily life with a disease for which there is no cure. I have been giving thought to this question for weeks, not entirely sure how to answer. Because I want my answer to be, “I just do.”

In an effort to provide a tangible response, I focused on three things that I believe can change your journey with IPF. Combining diet, exercise, and positivity (or prayer, depending on religious beliefs) can improve a patient’s ability to live with this disease. I pay attention to each of these on a daily basis. I consider them a “powerhouse trio” when living with IPF.

Diet and healthy eating

Healthy eating is arguably the most important thing we can do for our bodies when living with a chronic illness. But I often ask which diet would most benefit my condition.

There are certain foods that are recommended for improving lung health, and those that are known for immunity-boosting qualities. Many people believe that food can change how we feel with IPF, and that it contributes to keeping the disease stable for as long as possible. Eating well and making healthy food choices are popular topics on the Pulmonary Fibrosis News Forums.

I have had success with a diet that is low (as in next to none) in processed sugar, low in carbs, and high in fiber. While I don’t follow a particular plan, eating those types of foods helps me feel my best. When I cut sugar and carbs from my diet and focus on leafy green vegetables, my mental clarity is improved, I sleep better, and I have fewer aches and pains.

Exercise

On the other side of the argument is that exercise is the best thing we can do for our bodies while living with IPF. There is an abundance of literature on the benefits of gentle exercise, including a column by my late colleague Kim Fredrickson on how diet and exercise helped her manage IPF. Pulmonary rehabilitation programs tend to help patients improve their quality of life, but unstructured, home-based exercise can benefit those of us with lung conditions.

Exercising with IPF can be frustrating, not to mention exhausting. I hate doing it, but I understand its importance. I’ve found that a recumbent bike is the best tool for me. It reduces the risk of falls because I am sitting. Exercising my legs also is helping to reduce the pain and weakness in my lower extremities that I have noticed in recent weeks.

Positivity or prayer

I cope better with IPF when I remain positive, though that is easier said than done. Sometimes it means believing a cure is on the horizon. Other times, it is simply focusing on having a good day. Staying positive or believing in prayer can make all the difference in managing this disease on a daily basis.

I can’t control the progression of my disease or my ultimate outcome, but there are things I can control. I feel like I’m doing the best for my body when I focus on what I can do while living with this disease.

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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!
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5 comments

    • Charlene Marshall says:

      Hi Kate,

      Thank you so much for reading my columns and reaching out via the comments. Not too worry about your vote, we can hopefully correct it to reflect accurately – and thank you for such a high rating. I so appreciate everyone who reads my columns. Sending best wishes to you!
      Charlene.

  1. May Mya Win says:

    Dear Charlene,
    Thanks for your candid revelation. You are a real fighter!!
    Congratulations on all the success and achievement including your Master’s degree despite the disease and drawbacks.
    Who knows there may be a breakthrough soon enough
    I wish you well and all my other friends with the same disorder.

  2. Joe says:

    Thank you for sharing your inspiring story Charlene! I was dxd with IPF less than six months after retiring and now await a lung transplant. In eight months I lost 90 lbs in order to qualify for a transplant. In the process, I have given up my home to live with relatives who will care for me during the pre and post operative timeframe since I likely not be able to handle myself at some point for at least a period of time. Such a hugh but necessary adjustment. I went from 2 lpm to 5 lpm in 10 months and have held steady for 9 months. Good diet, regular exercise, prayer and support have all contributed to my positive attitude and current status. Keep up the good work and know so many benefit from your insights and encouragement.

    • Charlene Marshall says:

      Hi Joe,

      Thank you so much for reading my columns and getting in touch via the comments. While I wish this disease didn’t bring any of us together, I am thankful to everyone who reads my columns and connects with such kind words. They lifted my spirits today, so thank you for writing. I can only imagine the adjustments you’ve made in preparation for your gift of life – I hope it’ll all be worth it for you. I know it can be a tough road at first, but so many say they feel incredible after transplant. I will keep my fingers crossed for you that your gift comes soon – do keep us posted if you can? Congratulations on the weight loss to qualify as well, that is a lot of hard work, kudos to you. What worked best for you for the rapid weight loss? Take good care and keep me posted, I’d love to hear from you and so appreciate you writing. Wishing you the very best!
      Charlene.

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