Taking Pride in Our Accomplishments Despite PF

Taking Pride in Our Accomplishments Despite PF

Our bodies are amazing machines, but we can be hard on them sometimes.

My adventurous spirit has led to some accidents and injuries, but my body always prevails. When I push myself too far, my body forces me to rest, reminding me of my physical limits, which often supersede my spiritual and mental ones.

When I was diagnosed with idiopathic pulmonary fibrosis, I was afraid that I’d lose my ability to travel. Traveling with a life-threatening lung condition is risky, but the alternative — the same stagnant routine — is far more frightening.

I’m on vacation in Hawaii as I write this column. I’ve tried to balance activities and rest, but there’s so much to see here. I’ve definitely had more busy days than restful ones. But I’ve surprised myself with my physical abilities. I’m proud of everything I’ve been able to accomplish.

Gratitude puts things into perspective. It’s easy to focus on what we’ve lost because of chronic illness, but it’s important to reflect on our accomplishments from time to time. Over time, the little things we can do add up to big achievements.

Following are things I’m proud of:

  • Driving around Oahu: Honolulu, and the district of Waikiki, are located on the southern shore of the island of Oahu. I also was eager to see the island’s North Shore. I was the driver listed with the car rental company, so I was the only one who could drive. I was worried that long days behind the wheel would tire me out and was nervous about navigating a city like Honolulu, but I managed to do all the driving.
  • Climbing down to Queen’s Bath: The natural lava rock “bathtub” on the island of Kauai has been on my bucket list for a long time. However, I didn’t realize how steep and muddy the terrain would be. I failed my first time down the path, but I pushed my body to try a second time and made it down safely.
  • Snorkeling: Surprisingly, snorkeling can be a dangerous activity while vacationing in Hawaii. It tired me out, but I’m glad I was able to see some tropical fish, sea turtles, and dolphins.
  • Hiking: We took our time and only hiked trails classified as “easy,” but it was a memorable experience all the same. The rainforests in Waimea Valley were incredible.
  • Multiple flights: I was tired and sore upon arrival, but my body tolerated the long flights very well. I wore my supplemental oxygen and tried to rest, and only experienced minimal discomfort.

What are some things you’re proud of accomplishing recently?

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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. Judy Krasovec says:

    I have OLD and COPD and am on oxygen 24/7 on 3-4. I want to travel (car trips) and my oxygen provider is not very helpful on how I go about managing the oxygen! I was in hospital 2times in March and haven’t been able to use the inogen now. Don’t know if I ever will! Could you address this for me.

    • Charlene Marshall says:

      Hi Judy,

      Thanks so much for reading my columns and reaching out via the comments. Are you wanting to travel out of country with your oxygen via car trips? If so, that is the only “issue” I might foresee with just driving because you should be able to bring a portable car charger with your portable oxygen concentrator (POC) and a way you go. If traveling with tanks, this might be a bit different in terms of keeping them filled. You may need to be more proactive in mapping your route and knowing where you can stop and fill up the tanks in different cities along the way – pre-arranged with your doctor and/or oxygen provider of course. I’ve found more preparation needs to occur when flying with oxygen, but even then, it’s been manageable for me! Not sure if this helps? Let me know.
      Kind regards,
      Charlene.

  2. Charlene,

    I am so thrilled for you that you were able to make this trip to Hawaii! You so deserve it! I am also astounded at how well you have done, I believe a lot of it is your sheer will and determination! Enjoy! Enjoy!

    I have such wonderful memories of my two visits to this tropical paradise many years ago. Your photos brought these memories back. It is probably impossible but there is a picture of a palm with a split trunk you have displayed, that I am sure is the same tree that me and my partner had our photo taken leaning against! Likely just wishful thinking.

    Enjoy the rest of your vacation Charlene. Lorena

    • Charlene Marshall says:

      Hi Lorena,

      So nice to hear from you, thank you for writing to me and continuing to read my columns! I am so appreciative of your kind words re: Hawaii. It was the trip of a lifetime and I truly couldn’t have asked for anything better. I said to myself before I left on this vacation that “if I am on borrowed time, I am going to make the most of it” … column about this to come soon… and I really did! I pushed my lungs in ways I didn’t think would be possible, and I managed to do a lot! I was very tired by the end of each day but it was incredibly worth it. My absolute highlight: holding my idol/hero’s surfboard in Hanalei, Kauai. I’ve looked up to Bethany Hamilton for as long as I can remember after she was bitten by a shark and continued to pursue and become a pro surfer. Holding her board in her hometown was surreal for me!

      Glad the photos brought back memories – hold onto them tightly. I am already afraid I’m going to forget this tropical paradise so pictures will be so important to maintain my memory. It could be the same tree! Do you remember where yours was? I was on both the islands of Oahu and Kauai.

      Take good care and thanks again for writing! 🙂
      Charlene.

  3. Vivian says:

    Hi Charlene
    Glad you had a safe and wonderful trip. I have traveled by plane to New York with my Portable in the past and it was great! Now I am having problems breathing and walking a short distance. Are there portables that go to 10lpm? Worried in Alabama😔

    • Charlene Marshall says:

      Hi Vivian,

      Thanks so much for reading my columns and reaching out via the comments! I so appreciate your kind words about my trip – I was very lucky that I didn’t require hospitalization while away, though I pushed my lungs out of my comfort zone a few time and was worried I was going to need medical care. Luckily I didn’t 🙂 So glad you were able to travel, though sorry to hear it is becoming difficult for you to manage your walking and breathing… that must be so tough! In terms of portables that go to 10LPM are you thinking for plane usage? I’m not sure if there are any machines that deliver that much of a high flow consistently, that can be on battery for awhile (maybe while plugged in). There may be some machines that do 10LPM pulse though? Probably best to ask your oxygen provider about this and then bring their answer to your doctor about updating your 02 prescription? If you’re thinking of on the plane use, I’d ask the airline about using their oxygen instead of managing batteries for a POC that needs 10LPM. That would probably be hard, if not near impossible to do. Does this help at all? Charlene.

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