Preparing for the Holiday Season as a PF Patient

Preparing for the Holiday Season as a PF Patient

I love Christmas and all that comes with it: the lights, music, decorations, parades, and Christmas trees. But I know that the season is a stressful and lonely time for some people. Christmas isn’t for everyone.

This especially can be true for families facing hardships, or those who are spending their first holidays with a chronic illness such as idiopathic pulmonary fibrosis (IPF).

Christmas has become more important to me since my IPF diagnosis three years ago. I get upset if our family is prevented from getting together during the holidays, especially on Christmas morning. I understand that others have commitments, but I also know it’s possible that there won’t be as many Christmas mornings for me as there will be for my peers.

One of the gifts of living with a terminal lung disease is that I don’t take for granted the time I have with friends and family. Christmas is the perfect time to do that, and I don’t want to miss out on the opportunity.

I also am learning the importance of finding a balance between participating in festivities and getting enough rest. The past two holiday seasons, I’ve found it difficult to maintain my energy. Last year, I wrote a column about the importance of conserving energy. My late coworker Kim Fredrickson also wrote about enduring the holiday season as an IPF patient.

With Christmas less than a month away, I wanted to remind readers of ways to make the holiday season less chaotic and more bearable:

  • Pace yourself: This is one of the hardest lessons I’ve had to learn since my diagnosis. I’ve always operated at lightning speed, moving from one task to the next. But pacing yourself is crucial. There is so much to do during the holiday season. There are things to buy, organize, and wrap, and functions to attend. Don’t spread yourself too thin.
  • Avoid large crowds and exposure to illness: As hard as it might be to skip a holiday gathering where you know someone is sick, it’s better than catching a virus or bacterial infection that could be detrimental to our health. I’m still recovering from a setback caused by an infection, and I suspect it will affect my lung function as well. Visiting with friends and relatives who are sick is not worth the risk to our health or the potential damage to our lungs.
  • Make a budget and stick to it: Living with a chronic lung disease has significant financial implications. Christmas can strain anyone’s wallet. Gifts, dinners, and social gatherings can add stress for a patient who is already struggling financially. Making a budget and sticking to it is a way to lessen the financial worry.
  • Be proactive and get creative to avoid fatigue: If you aren’t an online shopper, I’d encourage you to consider it this year. I started shopping online long before I was diagnosed with IPF, but now it allows me to avoid being in crowds during cold and flu season and conserves my energy by having most of my purchases delivered to my door. I only go to a physical store for a few small items.
  • Take breaks during family festivities: Since my diagnosis, large crowds and chaos can be overwhelming because of the mental and physical energy it takes to keep up with everyone. During family gatherings, it is not uncommon for me to excuse myself to sit in silence and gather my thoughts. Please know that this is acceptable. It is important to take breaks during family festivities.

Do you have any tips to share for the upcoming holiday season?

***

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!
×
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. Wendy Dirks says:

    Thanks for this, Charlene – it’s relevant to everyone, even an old lady like me! For several years now, I have made photo books as gifts for friends. I save all the photos they text me, all the photos I take, and all the photos they post to social media, then make them into a book. It’s become even more meaningful for me since my diagnosis and knowledge that I have a terminal illness. I feel as if I put a piece of myself that will never be lost into each book – they always include a few pictures of myself with the recipients. I like to think that looking at the books will be a happy memory of me for them for years to come.

    • Charlene Marshall says:

      Hi Wendy,

      Thanks for reading my columns and reaching out via the comments – as always, it is so nice to hear from you! Such a great idea to make photo books as Christmas gifts for friends. I was thinking of doing this for a friend who lost one of her friends last year as a surprise, but maybe I’ll incorporate some of our pictures too for the purpose of preserving memories. The books will indeed be a happy memory for them for years to come – such as thoughtful, albeit tough, gift to consider for them. Thanks for the idea!
      Charlene.

  2. Nan Martin says:

    Hi Charlene, excellent post. Thank you for the ideas. Christmas is a challenge every year. My family are over 5 hours away so i don’t always get there. My husbands family are here in the city I am in, somehow the festivities always falls to me. They are all bachelors or have physical/mental health issues as well as intellectual delays. My husband, son and daughter in law are awesome and have assured me they will step up to the plate and take over many of the duties for me. I have to put my pride in my back pocket and remember I just can’t do things i use to. I am only 54 so this is hard for me. This year I did 95% of my shopping online, awesome i love it. I don’t plan to attend the big family gatherings on my husbands side, to big and stressful for me. My family does not do that. Thanks for the suggestions. Love the gift idea Wendy that is so smart!

    • Charlene Marshall says:

      Hi Nan,

      Thanks so much for reading my columns and reaching out via the comments – nice to hear from you! I can’t imagine how difficult it is to have to host the holidays with IPF, I find just attending so exhausting. Really glad to hear that you’ll have help this year, and maybe you can still assist them and be part of it but saving your energy for other things will be important this holiday season. Hope your Christmas goes well and prioritize your own needs this year 🙂 Wishing you well!
      Char.

Leave a Comment

Your email address will not be published. Required fields are marked *