How Various Groups Help to Sustain Me

How Various Groups Help to Sustain Me

younger than 30

I believe that people enter our lives when we need them most. I have always made friends easily, and I make an effort to grow and sustain these relationships. I value my connections and strive to nurture them. I have friendships with people I met while traveling and with others who live far away. However, since my diagnosis of idiopathic pulmonary fibrosis (IPF), I’ve changed my approach to maintaining relationships.

It can be physically exhausting to keep up with friends, including those who live locally and overseas. The extra effort can seem impossible with the limited energy I have due to IPF. My days are filled with taking medications, work duties, moderating PF News Forums, and carrying out the normal activities of daily life such as cleaning, cooking, and walking my dog. Once I complete these tasks each day, I am mentally and physically wiped out. I rarely check in with friends via text message or email — not because I’m not interested, but rather because I don’t have the energy.

I have learned a valuable lesson since my diagnosis. I’ve discovered that real friends will stick around through the hardships of this disease and check in with me. It’s nice to receive an occasional email, text message, or phone call. I focus on reciprocal communication with these friends who show they care. I connect with them as often as I can to find out how they are doing.

Another lesson that IPF has taught me is that particular groups of people come into our lives when we need them. I’m grateful for a few of these communities who have sustained me through this battle — I don’t know what I’d do without them. Each group offers its own unique support, and I can rely on various groups at different times. It’s like my own community of support, with each group belonging to a different “neighborhood.” I like to reflect on how each has helped me meet my needs as a chronically ill patient.

Following are some of those groups:

  • Family: I realize that the older I become, the more important family is to me. Members of both my immediate and extended family, including a large number of cousins, have accepted my life-threatening lung disease and provided me with assistance. Many of my cousins have young children and will let me know if one of them is sick so that we can avoid exposure to germs. At our family’s lake house in the summer, my cousins adjusted their plans to include me in their activities. For example, on a windy evening, they avoided gathering around the fire pit to ensure I didn’t get smoke blown in my face. They help to bring normalcy to the lake house, which has belonged to our family since I was a child.
  • Colleagues: While we have our differences at times, most of my colleagues are well-meaning and patient with my needs. I now struggle with memory retention, especially with learning and remembering new processes. My co-workers will remind me if I’ve forgotten to do something. I rely on them to help me be more effective at my job.
  • Crafting friends: I have a close group of girlfriends who love scrapbooking, and we often attend classes, fundraisers, and retreats together. We typically spend much of the weekend chatting and reminiscing over old photographs. We laugh and create together, and it’s a special time for me. They encourage me to devote space and time to crafting, an activity I find therapeutic.
  • Our PF News Forums community: The inspiring members of our PF News Forum share stories with me and offer insights and advice on how to live successfully with IPF. This group is special to me because no one else “gets it” like they do. I need them to inspire me daily in this fight and to be the voice of reason and support.

How have different groups in your life sustained you 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!

4 comments

  1. Robert Morrison says:

    Hi Charlene,
    Perfect list. And for those older folks like me and living in a condominium, one has neighbors who do for us what your colleagues do for you.
    Quick question, I have noticed when I start an activity e.g. walking to the beach, my numbers drop lower than they did even six months ago. I was diagnosed in Sept of 2016. Six months ago I might drop to 88 or 86 after walking up stairs. Now it regularly drops to 68 to 70. Is this what happens to us? Just seems to be a more dramatic change than I anticipated. Of course this will be discussed with my pulmonologist when I head north, but I value the comments from people like you who are living/coping with IPF like me. Thank you and bless you.
    Robert Morrison

    • Charlene Marshall says:

      Hi Robert,

      Thanks so much for reading my columns and getting in touch via the comments – wonderful to hear you have neighbours who help you similarly to my colleagues. These sure are special people!

      Have you talked to your doctor about the shift/drop in oxygen saturations with minor physical activity (ie. walking), Robert? This is really important to do so – people don’t wait until your next appointment – as your numbers going that low can be detrimental and damaging to your other organs. If you are on 02 and they drop that low, your oxygen needs have likely changed/increased, and if you aren’t on oxygen, I suspect you may need it. I am not a doctor of course, but it was my understanding that consistent saturations under 89 qualifies patients for oxygen. Again, I can’t say for sure but really important to talk to your doctor about this. Can you call and ask about it ahead of your next pulmonologists visit? I have seen a drop in my function (via pulmonary function tests) and saturations over the past few years (I was diagnosed in April 2016) but not that much of a change in 6 months. Please keep me posted on what your doctor says if you think about it, and I’ll be saying a prayer for you too – I can’t imagine how terrible you must feel when your sats drop that low!
      Take care,
      Charlene.

      • Robert Morrison says:

        Thank you Charlene. While I am in agreement that my low sats need be discussed with my doctor, it is easier said than done. I spend 5 months in Florida although my home and doctors are up in Illinois. I write him regularly with my concerns but the concerns are never addressed. Actually they are addressed but he tells me I have to get that terrible lung function test but I won’t be home for another month. I have tried to find a pulmonologist down here in Sarasota but as a new patient I can’t get in to see a doctor for two weeks to a month. I am on O2 all night and carry a portable when I leave home so nothing lasts too long but the drop in my sats is quicker and deeper since I got down here in November. I am just trying to find out if this is a normal development with IPF or is something else happening? You mentioned in other articles the difference between sadness and chronic sorrow but I would characterize my feelings as scared i.e. terrified of what’s happening to me. Bless you for responding to me and many others in the IPF community.
        Robert Morrison

        • Charlene Marshall says:

          Hi Robert,

          Thanks so much for reading my columns and getting back in touch with me following my previous reply. Yes, I completely understand and appreciate that it might be difficult to discuss your condition with your physician, especially given your time away from home and your primary doctors. I don’t find the lung function test too bad, it is a number of breathing tests that I don’t find too difficult but I know others may. What I don’t like is the stress test or the lung biopsy; I never want to repeat the former and the latter I’ve not done. I wonder if the change in elevation might have something to do with it? Just curious, I don’t know too much about US geography so perhaps there isn’t an elevation difference between Illinois and florida, I’m not sure. Sometimes a change in temperature can make a difference for us as well, might that be a cause of the steeper 02 drops? Just something to consider. Take care and please do keep me posted on how you’re doing. Goodluck when you return to your primary physician!

          Charlene.

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