Negotiating with My Emotional Self: Internal Struggles of an IPF Patient

Negotiating with My Emotional Self: Internal Struggles of an IPF Patient
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Have you ever had to persuade yourself to do something? I often negotiate with myself to complete tasks I don’t want to do by rewarding myself with something enjoyable afterward. That worked when I was in school and cramming for exams: If I just get through this last chapter, I can watch a television show or go for a snack. Since my recent health setback, I find myself negotiating a lot more.

I remember the discussions with my physicians in 2016 when I was told that I had idiopathic pulmonary fibrosis (IPF). Because it was rare to be diagnosed as a young adult, the doctor was uncertain about how my disease would progress. He told me that things may progress slowly, or that everything could be different within a number of months. I was naïve and chose to believe that not much would change.

Because I believed it would be a long time before IPF would affect my life, most of the negotiating I did with myself was about normal, young adult tasks. I would persuade myself to go for a run or a workout with a friend in exchange for the promise of a weekend visit to my favorite store. I told myself that if I ate healthily all week, I could binge-watch a television show with friends on Saturday night. The negotiations were rarely difficult, and there were no consequences if I didn’t uphold the bargain. But with IPF, few negotiations have no consequences if I don’t follow through.

I have been quite ill since early November. I am now in the recovery phase after being in a hospital bed for so long. Pulmonary rehabilitation and physical therapy are painful, intense, and exhausting. I am often emotional and frequently negotiate with myself to complete tasks, especially physical exercise and strengthening activities.

But my usual strategies aren’t working. It is only the lure of independence that entices me. Following are some of the negotiations I’m making with myself as an IPF patient who recently experienced an acute exacerbation:

  • If I eat enough, I won’t need a nasogastric (NG) tube: My stomach lining sustained damage, and I had an NG tube placed. Because of the damage, eating solid foods is unappealing. But I need to eat enough to get rid of the tube.
  • If I get through rehab, I’ll reduce my oxygen dependency: I used to need supplemental oxygen only at night and with physical exertion, but I’ve become dependent on it. A pulmonary rehabilitation program is painful and difficult, but my goal is to reduce my oxygen dependency.
  • If I get through physical therapy (PT), I’ll be more independent: Stiffness and pain come to mind when I think about PT. But the harder I work, the more likely I am to gain back some of the independence I’ve lost.
  • If I manage my medication regimen as directed, I’ll feel better: Any patient living with a chronic illness knows that managing, tracking, and organizing medications can be exhausting. But taking medications as directed is going to help my body live with IPF the best it can.
  • If I get this work done, I’ll be able to relax: I am guilty of this far too often! I need to do better at prioritizing rest and relaxation before I complete my work.

What negotiations do you have with yourself as an IPF/PF patient? In the comments below, tell us about them.

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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. Hi, Charlene,
    I have used the nebotiating with myself tool for many years, both before I became ill with IPF, as well as after my lung transplant. It’s an effective way to stay on track, whether it’s doing taxes, writing a thank-you note, or going for a walk when I really just feel like sitting by the fire with a book. If it’s a big chore that I am oh so tempted to ignore, I ‘ll often break it down into little steps, with a “carrot” dangling here and there, and often find that once started, I am happy to keep going.
    You have had a rough go of it recently, but things can and will get better for you. We are all in this for the long haul, you especially, because you have a long life ahead of you! I can’t wait to cheer you on post-transplant! In the meantime, good for you for finding helpful strategies. You have what it takes.

    • Charlene Marshall says:

      Hi Holly,

      Thanks so much for reading my columns and reaching out via the comments – as always, it is lovely to hear from you! I don’t recall using the negotiating with myself prior to being diagnosed with IPF, but after hearing your experience, I can certainly see how it would be an effective tool all-around. I am going to start doing this for positive tasks, instead of just difficult tasks pertaining to my recovery. Thanks for giving me that idea!
      Yes, things have certainly been tough and I sure hope to be on the recovery end of all of it now. I have so much left I want to do! Thanks again for writing, it is so nice to connect with you and I am very appreciative of your kind words.
      Char.

  2. Wendy Siceloff says:

    My name is Wendy and my husband recently had an acute exacerbation of IPF – doing well one week and then woke up One day not being able to breathe and requiring a 3 week hospitalization. Is there any pattern to what causes these episodes? Are patients able to return to their pre acute health/ lung functioning? Any recommended reading material on managing IPF?

    • Charlene Marshall says:

      Hi Wendy,

      Thanks so much for reading my columns and getting in touch via the comments. I love to hear from others living with this disease too, though certainly wish none of us had to contend with it. A cure cannot come fast enough! Hmm, unfortunately this disease is quite unpredictable so oftentimes there aren’t many patterns to what causes an episode. The known ones are a virus – I had a respiratory virus in early 2017 that caused both my lungs to collapse, leading to an exacerbation and lengthy hospital stay. This has happened again unfortunately as well, from pneumonia. Other things that can trigger an event are environmental factors like smog, smoke or pollen in the air, though this may not be for everyone. I also struggle with extreme temperatures (ie. heat humidity/cold) as it makes my breathing difficult. In terms of returning to baseline, yes this is possible, though usually there is some functional loss of the lungs. In 2017, my recovery was much better than it is going this time, likely because I’d had less disease progression last time around. I am slowly getting better – decreasing my 02 requirements and improving my breathing but this hasn’t been without the hard work of physical therapists and pulmonary rehab. Can your husband participate in a pulmonary rehab program to help strengthen his lungs/pulmonary muscles? Feel free to write any time, though so sorry you’re dealing with this illness too.
      Take care,
      Charlene.

  3. Catherine says:

    Thank you Charlene!
    Providing a site for folk dealing with an ILD is precious. Fortunately I have a solid community of loved ones who care, yet they have little understanding of this illusive and complex disease.
    I appreciate hearing the voices of others who are dealing with discovery and life with an ILD.
    Thank you for managing this forum. (I recently received confirmed diagnosis after five years of mis-diagnosis, and am yet to receive treatment other than ciclesonide, inhaler.)

    • Charlene Marshall says:

      Hi Catherine,

      Thank you so much for reading my column and reaching out via the comments! It is so nice to hear that our PF News site is reaching many with ILDs and hopefully providing them information, but also a source of comfort and community. I’m so glad to hear of your community of loved ones who care, this is so important for all of us patients. That said, I agree that it is tough when they just can’t understand. Feel free to write anytime, it is nice to have a platform of people who really “get it” and we’re here for you!
      Charlene.

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