Striking a Balance Between ‘YOLO’ and Practical Concerns with IPF

Striking a Balance Between ‘YOLO’ and Practical Concerns with IPF

If you’re aware of “FOMO,” you’ll know that it stands for “fear of missing out.” It can be used to describe the feeling that many people have of wanting to experience everything that life has to offer.

Sometimes FOMO can lead to people compromising their physical health by depriving themselves of sleep or pushing themselves too hard to ensure they don’t miss out on opportunities.

Despite my diagnosis of idiopathic pulmonary fibrosis (IPF), a life-threatening lung disease that causes severe fatigue and breathlessness, I have experienced FOMO. However, another four-letter acronym is relevant to me: “YOLO,” or “you only live once.”

Many of my peers don’t live according to the YOLO mantra because they expect to have years ahead of them for milestones such as travel, marriage, children, and retirement. I likely won’t have a long life. While IPF’s prognosis has improved in recent years, my lifespan will be significantly shorter than that of my peers. So, I try to embrace the YOLO mentality as much as I can, and I don’t hold back when given the opportunity to try new things.

However, I struggle to balance life’s practicalities with a YOLO mentality. Over the years, I’ve witnessed members of my extended family struggle with finances due to circumstances beyond their control, such as divorce and illness. The importance of having a financial safety net was drilled into me growing up. While I know that having an emergency savings fund is important, I ask myself, “What am I saving for?”

Thinking of my fate with IPF might seem dark and uncomfortable, but I want to be practical. I want to save with the intention of eventually buying my first home, but I also don’t want to miss out on opportunities that I may never have again.

I have just returned from vacation in Hawaii where I chose to spend money on an experience from my bucket list: swimming with dolphins. I felt guilty about investing in this expensive activity, but it was a once-in-a-lifetime experience for me.

While I recognize the importance of saving, I wonder about the point of having a nest egg if IPF will claim my future. My practical thinking battles with my adventurous side that knows I probably don’t have a long time in relatively good health to experience all of the things I want to.

After my diagnosis with IPF three years ago, one of my greatest fears was the financial burden of this disease. Between medications, hospital stays, rehabilitation fees, and time off work for appointments, I wasn’t sure how I’d manage. I am now physically unable to do some household tasks. While I rent my home, I have some maintenance costs to cover, too.

I am still young and don’t have years of a career behind me, and I’m not married with a dual income. I am still paying off debt from my undergraduate and master’s degrees. I’ve read that the cost of housing is moving far out of reach for those of us who are relatively new to the workforce.

When I dwell on these challenges, I become consumed by thoughts of saving and working harder to increase my income. However, when I lost a friend who didn’t get to experience life to the fullest, my YOLO mentality kicked in, encouraging me to live as loudly and fully as I can.

Do you experience YOLO? How do you find balance? 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!
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14 comments

  1. Bernd Felgner says:

    I am a person who was diagnosed in2012 with this dreadful disease. I did live a normal life until the spring of 2018. I joined a support group, which I attended 2 times per week and I found it very helpful. However, when I joined the support group, a walking test revealed that my body required oxygen. I started with a flow rate of 8lt/m. this is a high rate, after the rehab I was sent home with a portable oxygen tank and the next day I had oxygen (liquid) delivered in 2 storage filling stations to my home. now I am 24/7 on oxygen. I also have a oxygen concentrator with a flow rate of 10lt/m. at home
    which makes life a little easier. Now, things are getting tough, I am always tired, everything I do requires a lot of oxygen. I find walking the hardest to do. However, this disease effects everybody different, be positive, try to enjoy every day because life is very short.

    • Charlene Marshall says:

      Hi Bernd,

      Thank you so much for writing and sharing a bit of your story with us! Sounds like your 6 years between diagnosis and spring 2018 were pretty good ones. Was there something that expedited your symptoms in spring of 2018? This always intrigues me, but of course I wish it wasn’t this way for any of us. No one should have to deal with this horrid disease! Accepting the need for supplemental oxygen is tough, I hope you’re being gentle with yourself in terms of needing it. Is your concentrator that goes up to 10LPM portable? I just had another member ask me a question about this, and whether a portable concentrator went up to 10LPM pulse or continuous. The fatigue and breathlessness as this disease progresses is so tough! Hang in there, and you’re absolutely right: try and stay and enjoy every day because life really is short! Feel free to write any time!
      Charlene.

  2. Angie says:

    Thank you for a great article. I am much older than you, 67, but like you, I feel I must balance saving money for the future with spending it on things I can still enjoy now. I have a long bucket list and, even before my diagnosis of PF one year ago, I felt I needed to tick most of the items off before 70, as one never knows what will hit you. But it is definitely more of a challenge for someone who is young. As you’ve said, you don’t have the years of a career behind you, or more tangible items like your own home or a family. And yet, you have the possibility of time. With the current advances that are being made in researching new drugs to treat PF, there is every possibility that one’s “shorter than expected” life span will actually be much longer than expected. At least, that is my hope for each and every one of us who has PF.

    • Charlene Marshall says:

      Hi Angie,

      Thanks so much for reading my columns and getting in touch via the comments! I so appreciate the kind words on my column from readers who can relate to the content of what I write about. Isn’t it so hard to find that balance? My adventurous side wants to do everything – especially while I still can – but my practical side knows there are bills and expenses I still need to achieve. I like your approach of sharing the possibility of time that I have on my side, especially with the research and medical advances that are taking place around the world. I’d like to think this will benefit all of us, and like you say, change an expected short lifespan to a long one! Hang onto that positive thought, and work through that bucketlist… you’ll never have any regrets doing that. Thanks for writing!
      Charlene.

  3. Bobbie says:

    Hi. My name is Bobbie and I have suffered from COPD for many many years. My husband was diagnosed with IPF 9 years ago and it has been dormant until this past year. We do not know why it was dormant and we do not know why it became active.
    He is taking Ofev which we are hoping slows down the disease. We are paying for him to go to therapy 3 days a week. He is loosing weight and drinking high protein drink and eating well balanced meals.
    I think it is rare for both of us to have a lung disease.
    As a spouse it is tough as I am worried about all he will go thru with his IPF and learning how to deal with it along with him.
    I pray for patience as the IPF takes over more of his body.

    • Charlene Marshall says:

      Hi Bobbie,

      Thanks so much for reading my columns and getting in touch via the comments. Sorry to hear of both your COPD diagnosis, and that of your husband with IPF… that sure seems unfair! I can imagine it would be frustrating to know it was dormant for so long and now is causing him some troubles by the sound of it. I hope he tolerates the OFEV okay, I know it can be really tough on the GI-system. It took me a long time to be able to tolerate it, but I am also on this medication. Hang in there, a caregiver role for this cruel disease certainly is not easy but take care of you too. Will be joining you with some prayers for you both.
      Charlene.

    • Charlene Marshall says:

      Hi Jesse,

      Thanks for reading my columns and getting in touch via the comments. You’re absolutely right with the mentality of ‘you can’t take it with you’ and we’re a bit more certain that our ‘forever’ won’t last as long as others, due to this dreaded disease. However, the practical side of me then kicks in and makes me give my head a shake. If only experiences were free! There is so much I still want to do in this lifetime. As for skiing – hmmm, I think there is no harm in inquiring with your physician about how the cold and elevation of the Alps might effect your breathing. I also think it is a good goal to work towards. Snorkeling in Hawaii for me was so very thrilling because I didn’t know if I could do it – a risk yes – but achieving it was so amazing for me! Let me know if you plan on skiing the Alps and I’ll be sending you all my good vibes!!!
      Charlene.

      • Charlene. Thank you for all your information. I too want to travel a bit. I live in Ontario as you do. The problem I’m facing is that I am an active 72 year old female. Diagnosed in 2018. Not on oxygen yet. No major other health problems but I can’t seem to buy travel insurance. Two companies have replied try another company. I just want to go to States for three days. My concern is a car accident, a fall, which could put me in the hospital but the issue is I can’t buy travel insurance. Do you or any of your readers have any suggestions. Am I able to buy travel insurance from any company? I live in the GTA area of Ontario

        • Charlene Marshall says:

          Hi Patricia,

          Thanks so much for writing and for your kind words re: my column. Glad you found us, and hello from a fellow Canadian!

          The issue of insurance really is tricky, especially if trying to purchase after a diagnosis of a chronic illness like IPF. While I’m not sure my suggestions will be super helpful, here is how I get around the insurance issue and being able to travel outside of Canada. When I opened my student loan upon attending University, I lumped in medical, travel and life insurance into it. in the event something ever happened to me, I didn’t want my parents having to be responsible for that student debt. Since this was long before my diagnosis of IPF, they’ve honoured the insurance for me. Any chance you have a mortgage, or line of credit where this might also stand, but unbeknownst to you yet? Check out that option.

          The other thing I have, which I am grateful for and this is what I’ve primarily used while traveling recently is the travel insurance associated with my employee benefits. I also obtained this before I was diagnosed, though just merely. Again because I bought/paid into the insurance before getting sick, they have honoured it. I consider myself very lucky this way as I know insurance is tough to get after a diagnosis. I do know of others who have purchased insurance though, so it is possible. Have you checked out the PF Forums or the Canadian Pulmonary Fibrosis Foundations Facebook page? Asking there may be a good spot to see if other Canadians can help you with this. I’m sure others have had to navigate this issue too. Thoughts?

          Let me know if I can be of more help!
          Sincerely,
          Charlene.

  4. Fran Anderson says:

    I’m very glad I found this page, and I thank you for it. The reason I’m commenting is that I wonder what is going on with your “ratings” box. I rated this blog at 5/5, and yet my rating is recorded at 1/5, and I can’t change it.

    • Charlene Marshall says:

      Hi Fran,

      Thank you so much for reading my columns and getting in touch via the comments! I am thrilled to hear you’re glad you found us too, and hope our topics resonate with you. Regarding the ‘ratings box’ — I’ll touch base with our tech team and see what is going on. It may be a glitch and they will be able to fix/change it for you. Stay tuned, I’ll send them a note now and they will likely see it Monday morning 🙂
      Charlene.

  5. David Ota says:

    Charlene
    I tried rating your post as 5 stars and it took it as 1 star. Your posts are the most thought provoking articles I read.

    As a NOT under 30 IPF and transplant survivor, your post are very difficult for me to wrap my brain around, age has changed my perspective and goals. However as an IPF and transplant survivor, I will say that IPF and a double lung transplant is not for the faint of heart or for the light of wallet.

    I recall laughing with a nurse friend of mine about my horrible diet (sugar and burritos), she made a snarky comment, and I laughed and told her there was virtually no chance I would die of diabetes, something else would catch me before my candy and Popsicle diet would. She got serious and said if I planned to live another 5 years, then that’s what I would do. Healthcare professionals are such killjoys.

    • Charlene Marshall says:

      Hi David,

      Thank you so much for writing and sharing your experience with us!

      I was made aware by another member that they also tried to select a 5/5 rating, but it was taken as a 1 star. We’re on this and trying to sort it out – thank you for your kind words regarding my column. Being able to write about my experience with IPF and talk to others about things that impact me has truly been a Godsend throughout this journey.

      Do you mind if I am in touch as I move nearer to transplant evaluation (again) in case I have some questions? With being in Canada, there aren’t any costs to the actual operation itself, however, I know there are a lot of medication-related costs and post-transplant care expenses. This worries me a little bit, more than the ability to endure and overcome the procedure. Was this piece, the financial strain, a concern for you when you chose to pursue transplant?

      Thanks again for writing, and please stay in touch. I am so grateful to hear of your experiences, on the ‘other side’ of this illness, ie. post-transplant.

      Kind regards,
      Charlene.

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