I’m Harnessing the Power of Positivity in My Battle with IPF

I’m Harnessing the Power of Positivity in My Battle with IPF
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These past six weeks have been difficult as I continue to recover from a horrible ordeal with both pneumonia and influenza. While I’ll never know how I came into contact with these viruses, I’ve become paranoid about touching surfaces such as grocery cart handles and doorknobs because of my fear of getting sick again. This flu season, I’ve written about the importance of staying healthy while living with idiopathic pulmonary fibrosis (IPF).

While I am slowly getting better, I have had pulmonary function tests, which revealed permanent damage to my lungs. Any loss of function is detrimental to a patient living with IPF, and some of my values have dropped significantly. I will try hard to regain that function through pulmonary rehab and I know that I have some control over how I handle this setback. In addition to contracting pneumonia and influenza, I contracted strep throat on the day I had a port-a-cath placed in my chest. My throat was incredibly sore when I woke up from the sedation because of the breathing tube and the swelling from the the strep throat.

The last few weeks have been some of the toughest since my IPF diagnosis. I’ll always remember my first acute exacerbation in May 2017. Equally, I won’t forget how hard it has been to recover from these recent illnesses. I’ve tried to keep my mind in a positive place and prevent the frustration, sadness, and pain from overwhelming me and leading me into a state of depression. As anyone living with a chronic illness knows, this is way easier said than done.

Thinking positively is an important part of your physical and mental health when battling a chronic illness such as IPF. I believe in finding a balance between a positive mindset and facing the reality of living with this disease. Sometimes, when it seems impossible to remain positive, I remind myself of strategies that can help.

Here are some of the ways I try to stay positive during my darkest moments with IPF:

  • Positive self-talk: Humans are compassionate beings, and we speak kindly to others who are having a tough time. We encourage them and highlight their positive traits to show support. Have you ever tried talking to yourself in the way you might speak to a friend going through a tough time? It might be an unusual approach, but it’s one way to foster more positive self-talk because we should offer ourselves the same encouragement, praise, and compassion that we give to others.
  • Self-care to boost confidence: Many people struggle with self-confidence, and I often wish I could alleviate their struggles. Self-care is essential to our coping abilities in stressful situations. To help maintain a positive mindset, I set aside time for self-care, which also boosts my confidence. For example, I may book myself an appointment to get my nails or hair done.
  • Do something positive for others: I like to make a gesture or offer practical assistance to brighten another person’s day. Positivity and happiness are contagious, and the endorphins that come from helping others make us feel good as well.
  • Refrain from self-sabotaging behaviors and thoughts: Most of us are guilty of this, but keeping a positive mindset to battle a chronic illness leaves no room for self-sabotage. Sometimes I’m quick to say, “I can’t do that,” whether I physically don’t feel up to it or my anxiety is telling me it’s impossible. However, I’ve learned that refraining from the negative self-talk and reframing the “I can’t” statements allow me to accomplish something. Instead, I try to think of tasks that I can complete. Reframing makes a big difference in my ability to think positively during difficult times.

What other things do you do to help you remain positive on your IPF/PF journey?

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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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6 comments

  1. Karen says:

    I’m so sorry to hear of your recent illness. I try so hard to be pro active in taking precautions not to catch a cold of flu. Your columns are ALWAYS uplifting and positive. I also try to be that way. I look for your name on the articles each week in hopes there will be one. God bless you and keep you healthy. Praying for you daily. 💜

    • Charlene Marshall says:

      Hi Karen,

      Thank you so much for reading my columns and connecting via the comments with such kind words! I really appreciate them, and I’m glad to hear you are being proactive in taking precautions to avoid getting ill. It is so important for us to do that because ultimately, any illness can spiral quickly causing us to permanently lose lung function which has unfortunately happened to me. This is such a tough time of year for us, unfortunately. Take good care and thanks for your kind words and prayers – they really mean a lot to me Karen. Kindest regards! <3 Char.

    • Charlene Marshall says:

      Hi Ghulam,

      Thanks for reading my columns and reaching out via the comments. Good question – I did receive the flu shot but unfortunately still came down with influenza A. I did not get the pneumonia shot however, perhaps I should have? I received lots of antibiotics for both illnesses, too hard to remember all of them as some were via IV while I was in the hospital and others were oral tablets. Thanks for writing.
      Char.

  2. Hans Fink says:

    Hello Charlene,
    Thanks for this positive message. I’m am glad that it is helping you.
    Being positive is something I have practiced even prior to my IPF diagnosis.
    If you don’t mind, I will copy your article & distribute it to our support group members.
    Sometime it is hard to try and impart such wisdom to our fellow IPF sufferers. Many seem to erroneously believe that being positive is denying realities. But hopefully, hearing it from other IPF patients may sway more to try this approach.
    Thanks again & stay well.
    Hans

    • Charlene Marshall says:

      Hi Hans,

      Thank you so much for reading my columns and getting in touch via the comments. I always love hearing from you and your commitment to positivity – I agree with you that it is so important on our journey! Yes, please do share the article and distribute as you see fit. I wish I could attend your support group, I love hearing what others are doing in terms of patient connections and support. If I can ever be of assistance yo your group, please don’t hesitate to connect. It is hard to be positive, but ultimately that is important and even the literature shows this. You’re doing great work – keep it up!

      Many thanks for writing.
      Charlene.

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