Why I Enjoy Having Nothing to Do Since My Diagnosis

Why I Enjoy Having Nothing to Do Since My Diagnosis

younger than 30

If you have read my previous columns, you may be aware of how much things have changed for me since my idiopathic pulmonary fibrosis (IPF) diagnosis. My current life is nothing like the one I had before, and that took me some time to accept.

But I am now OK with this. I am more than OK with this, as my disease has taught me many different lessons. One of those lessons, and arguably one I would never have learned without my diagnosis, was to slow down and learn to appreciate the quiet moments in life.

I used to live at lightning speed. I would get up in the morning, complete a small workout, get ready, and go to work for the day. And then my evenings would be filled with chaos and running around late into the night. I was usually found doing something social with friends or playing my favorite sport until midnight. I would then come home and shower, catch up on social media or emails, go to bed, and do it all over again.

Since my IPF diagnosis, there is no way I could maintain that schedule now. I tried to hang onto it as long as I could. Giving up a schedule like this, one that I loved so much, was hard for me. But now, I am grateful.

I am even more grateful for the social opportunities that I get with friends and family because I don’t build them into my everyday routine anymore. I just can’t, because working full-time with IPF tires me out enough, and I try my best to preserve my energy in the evenings by doing something quiet, which sets me up for success the next day.

I have learned to love quiet moments, and I really value my alone time. I am filled with the pleasure and enjoyment of choosing what I want to do based on what will make me happy. I thoroughly enjoy having nothing to do, and here is why:

  • I can move at my own pace. For a variety of IPF-related reasons, I don’t like to be rushed. But sometimes I am when I’m with others. When I have nothing to do, no one judges me for being slow-moving or choosing to lie in bed until the late afternoon if that is what I need to do. If I choose to run an errand, and it takes me the entire morning to get dressed or ready to go out to complete that errand, no one minds because I can move at a pace that is comfortable for me.
  • I can rest when I need to. On the weekends, especially when I have nothing going on, it is not uncommon for me to crawl back into bed for an afternoon nap. Some may argue that I am wasting my weekend, but I am tired because of my disease, and napping helps me feel rejuvenated. Since I can’t nap much throughout the week, I enjoy not having a weekend schedule so that I can rest whenever I need it.
  • I can think about the tough stuff on my own. I have a select few people I speak with about the “tough stuff” of this disease, including my innermost fears. I am thankful for them and their ability to hear and try to understand my worries. However, even when I am with them, I still have a bit of an emotional guard up because I don’t want them to see my authentic emotions — I fear that it’d be too much for them to handle. When I am alone and have nothing to do, I often think about the more difficult things. Since no one is around, I can really feel and process the thoughts, unshielded.
  • I can get lost in my creativity. When I have nothing to do, I usually turn to my love of crafting and spend hours in my scrapbooking room. This brings me a lot of joy, and when I don’t have a schedule to follow, I can get lost in the joy of scrapbooking wonderful memories with friends and family. Not only does this make me happy but it will also be a wonderful gift to leave behind for those who love me.

To other IPF patients out there: Have you learned to love quiet moments or days without a schedule? What do you fill those days with? I’d love to hear from you!

***

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.

24 comments

  1. Don S says:

    Hi Charlene. This is Don in Vancouver. I can totally relate to everything you feel. I have the same struggles and we probably have the same fears. I know what it’s like to wake up feeling glued to the mattress, so tired you can’t get up. You’re not alone. Hang in there! Embrace the experience and know that this is just one step in the experiences of our eternal progression.

    • Charlene Marshall says:

      Hello to a fellow Canadian, Don!

      Thank you for reading my column and contributing your comments here. I am so thankful for anyone who reads my columns, and especially other patients who can relate to how I am feeling or my experience. Since so many days are spent feeling breathless and fatigued, it really makes me value and appreciate the “good” days. I am holding out for many more good days, even if they are embedded in days of fatigue… I will hang in there, and I hope you do too! Thanks for sharing, and best wishes to you.

      Sincerely,
      Charlene

      • Geoff says:

        Recently diagnosed with ipf. Fully understand how you feel. I didn’t understand how debilitating the tiredness was until trying to do more physical exercise on advice from specialist nurse. I am 66 yrs of age! You’re so young. There’s so much ignorance about the disease. Take care.

        • Charlene Marshall says:

          Hi Geoff,

          Thank you so much for reaching out, although I am sorry to hear of your recent IPF diagnosis. It is so unfair, and such a cruel disease. I certainly took my physical ability for granted before I became ill, and now I try to encourage others to live the best life they can as they have no idea when their abilities will change.

          Feel free to connect back any time, we’re all in this together. Wishing you nothing but the best!

          Warm regards,
          Charlene.

  2. Catherine says:

    I pray for your continued strength dealing with this ugly disease. Stay strong and healthy. Friday morning I lost my husband of 42 years. He too had IPF. The last couple of months were a struggle. He developed pneumonia at Christmas and had a hard time recovering. He had Hypoxia with Syncope the last few weeks. During an episode he broke his leg. Surgery was done to place a plate and screws. He passed away 2 mornings later. I thank you for your blog. I will keep you and all of your followers in my continued prayers. God Bless you. Catherine

    • Charlene Marshall says:

      Hi Catherine,

      Thank you so much for reading my columns and your prayers for health and strength. They are so very appreciated!

      I am also so sorry for the loss of your husband, this disease is very cruel and unfair, and I sure with your husband didn’t have to struggle and suffer. It sounds like he fought a courageous fight with his IPF, and I hope he is in peace and breathing easy now. Although, I wish that didn’t have to be apart from you and your family. Thank you for keeping all of us in your prayers.

      Sincere regards,
      Charlene

    • MOaishia says:

      I am so sorry for your loss. Holding you in love during this time. I repeat what Charlene says, thank you for keeping us all in your prayers, it truly means so much! <3 Love and light to you

  3. Timothy Middleton says:

    This is me, but I never knew how to explain it. My relationship ended due to the fact that they don’t understand why I never wanted to do anything. I really enjoy quiet time,reading,watching TV. I try and preserve all my energy for my full time job of 22 years and my 16 year old daughter’s volleyball games which has are draining but that time together is the highlight of my life and I won’t give it up because she will be off to college soon. My ex wanted lots of my time and attention for her to go do all this stuff but there was no energy left.

    • Charlene Marshall says:

      Hi Timothy,

      Thanks for reading my columns and for sharing a bit of your story, although I wish it had a different ending for you!

      It is so hard for us patients who are trying our best, but physically really enjoy (and need) our quiet time so that we can preserve our energy for things we need and want to do. It goes back to IPF being such an invisible illness that makes it hard for others to understand, although it is still so important to us that others are understanding and compassionate. I’m really sorry about your relationship ending, and I hope you are able to enjoy some quiet time to enjoy your days as you choose to Timothy. Best wishes to you.

      Warmly,
      Charlene.

  4. Colleen in MI says:

    Hi Charlene…great column. I can truly relate to this. I still work full time and I’ve come to the conclusion that my weekends are spent resting up so I can make it through another work week. I’m a single parent (daughter 20 in college full-time) and I need the health insurance so I have to work as long as I can. I lost my job of 29 years last year and started a new one shortly thereafter. I tried to keep my disease a secret as long as possible but once I had to use my o2 at work for walking around, mostly going to the 2nd floor, I had to tell them. Needless to say I was quite concerned over telling them and what they would think, but they have been supportive and now I just backpack up and walk where I need to go. My O2 Odie (the name I gave my o2) is right here by my side. Once I go on it fulltime I’m not sure what will happen. I still do stuff on the weekends, but it too tires me out. I feel bad for my daughter, who is now my caretaker and my boyfriend who are pretty understanding but I feel guilty putting them through this disease (I met my boyfriend during the diagnosis stage and was upfront with him). I don’t feel it’s fair to him to deal with this disease. Most men at my age are looking for retirement and going and doing things and I’m going to be limited at what I’ll be able to do. If my boyfriend decided he couldn’t handle this anymore, I’ve decided to remain alone. Unfortunately, I don’t have a close circle of friends like you. Thank you for your articles, I enjoy them very much and I’m sorry that someone so young has to deal with this nasty disease. P.S. Sorry I went off subject! 🙂

    • Charlene Marshall says:

      Hi Colleen,

      Thank you so much for taking the time to read my columns and for contributing your thoughts and experiences. I’m glad to hear that my column is relatable for you, I love to know this as I strive to write columns that other patients will feel connected to based on their own experiences.

      I am so sorry about the loss of your job, I hope it wasn’t due to your diagnosis? It sounds like your current workplace is very understanding though, and I am so glad to hear this. My workplace is amazing as well, but I certainly can understand the concern that came with sharing your diagnosis. I was very nervous too. Everyone has adapted to my tanks or portable oxygen concentrator being present with me (I’ve named mine as well!) which I am thankful for.

      Your relationship with your daughter and boyfriend sound very special, and I am glad you have this. I know the feeling of it feeling unfair to them, but I try not to think too far ahead and trust in their ability to cope or tell me if they aren’t able to handle this diagnosis anymore. Sometimes my mind jumps ahead 5 years and I wonder how my disease will have impacted people, especially if I am no longer here, but then I try to bring myself back and focus just on the moment.

      Feel free to connect anytime, I truly understand what it is like to live with this disease. If you have any suggestions for topic ideas, please let me know 🙂 I’m so glad to hear that you enjoy reading them.

      Warmest regards,
      Charlene

  5. Karen says:

    Hi Charleen,
    Thank you for your really insightful columns which give me the opportunity to read what other PF patients have to contribute as well. I am new to this site and very impressed with the generosity and honesty in each of the posts I have read. It really is a comfort knowing others are trying to make the very best of their lives in the most comfortable ways for them while continuing to relate as well as possible with friends, family and co workers. It seems we are a pretty tough group who occasionally can come here to be real. From my heart, thanks to all.
    Karen

    • Charlene Marshall says:

      Hi Karen,

      Thank you so much for reading my columns and contributing your comments. I always love to hear from people who find my columns helpful, so I am really glad you reached out.

      Yes, the “community” that has formed around not only my columns, but all the Pulmonary Fibrosis News content and through our new forums https://pulmonaryfibrosisnews.com/forums/) has been really amazing. Friendships have been established, and so many people take the time to help you with questions or concerns. I feel very privileged to have connected with so many wonderful people, so please do feel free to join us at any time, and use these platforms to chat about anything on your mind… you are always welcome. It is also a wonderful place to find inspiration and see people living their best life despite this cruel disease.

      Thank you again for your kind words, I will cherish them always. And please know you’re very welcome here.
      Wishing you all the best.
      Warmly,
      Charlene

  6. Kenneth cameron says:

    Hi Charlene;

    This is my first time posting to a board. I am also a fellow Canadian but now reside in the northeast in the US. I really enjoy your writing. Trying to figure out if I should move back home. I am new to all of this so it takes me a little while to digest.

    Continue writing for I enjoy your writing.

    Kenny

    • Charlene Marshall says:

      Hi Kenny,

      Thank you so much for taking the time to read my columns and write to me via the comments. I always appreciate hearing from those who read my columns and find them helpful. It is such a honour to write for Pulmonary Fibrosis News!

      There certainly would be lots to consider about moving, especially back to a different country when it comes to healthcare and access to services pertaining to a chronic illness, such as IPF. I can only speak to Ontario’s centres, and we’re pretty lucky here in terms of some really dedicated and committed researchers and healthcare professionals to PF/IPF.

      Feel free to reach out any time, I know this disease and the information about it can be overwhelming. I certainly will continue writing, thank you again for your kind words. Best wishes to you!

      Warmly,
      Charlene.

    • Kenneth cameron says:

      Hi, I just read your bio …. I just came back from Australia over New Years. Not sure how to find any personal info but I would have sent you an e-mail. I will be in Toronto tomorrow. My cousin is taking me to St. Catherine’s.

      Kenny

  7. I was just diagnosed with pulmonary fibrosis. I had never heard of it. My doctor put me on steroids which is terrible. I’m also on oxygen which is very helpful. I told my doctor I need to stop taking the steroids because it makes me so sick. She said I can’t stop taking the steroids because it will make me sick. I plan to get a second and third opinion on how to treat this disease. I’ve had the CTScan . I live in New Jersey and so far I haven’t been able to find a good pulmonary fibrosis doctor, I have seen three and they were terrible. If any one that live in New Jersey know of a good pulmonary doctor, I would be greatly appreciated.

    • Charlene Marshall says:

      Hi Delores,

      Thank you for reading my column and sharing your comments with us. I am so sorry to hear of your PF diagnosis, and I certainly agree with you: steroids can be terrible to adjust to. Were you put on prednisone? There may be some people out there who can help you manage the Prednisone side effects, and give you tips and tricks for it if your doctor wants you to remain on the steroid. Was your CT scan the high-resolution CT scan (HRCT)? This is an important step in your diagnosis.

      I am Canadian and therefore, can’t speak to many specialists in the US. However, if you wanted to join our forums at:https://pulmonaryfibrosisnews.com/forums/, you might find someone from NJ there. I know for sure there are a couple members from NY 🙂

      Take care and connect with us any time Delores.
      Warm regards,
      Charlene.

      • Kenneth cameron says:

        Hi, I just read your bio …. I just came back from Australia over New Years. Not sure how to find any personal info but I would have sent you an e-mail. I will be in Toronto tomorrow. My cousin is taking me to St. Catherine’s.

        Kenny

        • Charlene Marshall says:

          Hi Kenny,

          Thanks for your message, and welcome back to Canada! Australia is wonderful, I thoroughly enjoyed my time there and have actually been working on capturing my memories while there through creating a photo album this weekend. Please feel free to contact me directly at: [email protected] if you’d like. Stay safe if visiting Toronto, we’re just wrapping up a 2-day ice storm here!

          Enjoy St. Catharine’s and hopefully a visit to Niagara Falls as well, since you’ll be so close.
          Take care,
          Charlene.

  8. Ron Cade says:

    Hello Charlene: So sorry you are having to deal with the IPF.

    I’m a old guy with IPF but there are things to do. Water faucets dripping. Car brakes to replace. I did hire a yard work guy. That’s a bit much for now but sure wish I could do it. Its good exercise you know.

    I have been dealing with this IPF for five years I’m sure. Diagnosed two years ago this month and went on Oxygen 24/7 soon after. I mostly want to let you and the others know about PFWarriors.com. lots of info there with some videos. I get to go to a support group at UT (University of Texas) Southwestern in Dallas, Texas, and hear lectures from doctors and other specialist. Thought I would share this info. Last Saturdays video not posted yet. Maybe soon I hope.

    The best to you. Hang in there.

    I must also say I hope all are ready for our end time. I need to tend to the funeral things. I’m a Christian and continue Bible study. There is no anxiety here. As I understand Scripture, I’m in good shape for my end of life here. My hope is that all others have this same hope and peace of mind without anxieties. Cheers!

    • Charlene Marshall says:

      Hi Ron,

      Thanks again for reaching out and as always, for reading my columns!

      I am sorry that we’re all using this platform to connect over our IPF diagnosis. I sure hope I live long enough to see a day where this illness is eradicated for good.

      I empathize with you about still wanting to do the things that we once could before our diagnosis, and the things that bring us joy. I miss doing things around our home for myself as well. Although, I still do quiet hobbies around home I certainly miss the things I used to be able to do and no longer can. Hang in there!

      I actually didn’t know about the website you shared, I’ll have to check it out! There are some amazing resources out there, for which I am very thankful. I know others will benefit from this as well, thank you for sharing!

      Sending you the very best as well Ron. I haven’t done much funeral preparation either, it is something I haven’t yet been able to bring myself to discuss at thirty years of age, although I do acknowledge it’s importance when living with a disease such as IPF. Thank you for sharing a bit of your story and wishing you nothing but the best.

      Warm regards,
      Charlene.

  9. Alfred Arnold says:

    Hi Charlene,

    Last week (4-8-18) I moved to the single large brown 801 mg Esbriet tablet after finishing the initial dose of the 267 mg white tablets. All was going quite well with no side effects. On the 4th day (4-14-18) a rash developed. I contacted my Pulmonolgist and we decided to to stop Esbriet for now. I may go back to the 3 small white tablets 3x/day once the rash subsides.

    The rash got progressively worse turning into a case of full blown urticaria (hives). I went to my Dermatologist who gave me an injection of Triamcinolone, a Triamcinolone cream, Hydroxyzine HCl for nighttime itching and recommended Allegra taken in the morning. After another 2 days with no relief and further progression of the rash I went to my primary care physician (4-18-18) who gave me an injection of Dexamethasone and prescribed a 2-week regimen of decreasing doses of Prednisone.

    I am seeing some relief but having trouble sleeping due to the itching and some acid reflux which I get from time to time. I decided to go down to my den and lay on the strato lounge and turn on Pandora to the Enya station. I find the music soothing and relaxing when stressed.

    I noticed that you visited Australia. I found out when I was 16 that my birth mother who died in a car accident when I was 2 was Australian. My father remarried several months later. The accident occurred in Germany where my father was stationed. He and my mother were out celebrating as I took a turn for the better in the hospital as I was suffering from pneumonia.

    I assume because of the guilt and pain my parents didn’t tell me until I was 16 that who I thought was my mother was actually my stepmother. This was a great shock to me. I remember going straight to my bedroom, lying down and turning on the radio. The first song playing was “There Will Never Be Another You,” by the Australian Group, The Seekers!
    It wasn’t until about 15 years ago when I was about 55 that I found my Australian family in Melbourne. After entering my mother’s maiden name into the National Australian phone book on the internet, I came up with a list of 25 names and addresses. I wrote a letter including personal information about my mother and sent the letter to the first person on the list – asked if the information was familiar to write back, or send my letter to the next person on the list.
    About 10 weeks later I got a thick envelope from my mother’s cousin. The letter was thick because she photocopied 10 pages from a family book that was published in the 1970’s. It contained my section of the family tree. You can not imagine how blown away I was when I came across my name with birth date!!
    What I didn’t realize was that there was a second thin letter postmarked from Australia. It was from the sole surviving youngest sister of my mother. My Aunt Win who will be turning 90 next year received my letter on her 70th birthday!
    A few years later I made the trip to Australia and met Aunt Win and my 3 first cousins and my mother’s cousin, who everyone calls “Babe”
    This was truly the most emotional, heartwarming event in my life. We were treated like royalty everywhere we went as we met relatives in Melbourne, Geelong and my mother’s birthplace – Horsham.
    I kept a diary each day of the trip along with photos. My Aussie family knew about me and kept memorabilia that they gave me. I found out that my Australian grandmother wanted to take care of me after the accident, but my father’s mother also wanted to take care of me and as it turned out I grew up in the USA. I wonder how different it would have been if I had grown up in Australia.
    I know now that it would have been among a loving family Down Under.

    I could go on but wanted to leave with one final amazing item. My first cousin John has a mirror image of my family. He has a wife quite similar to mine, an two sons that are each a year younger than my two daughters. My daughters tell me how similar I am to John, my laugh, demeanor and sense of humor.
    We had many phone conversations and emails before the trip. I found out that John’s wife’s favorite singing group is The Seekers. She has attended many of their live concerts. She sent me a live version with artists commentary of “There Will Never Be Another You.”

    It still gives me chills as I write this. Who knew when I penned what I might call “A Message in a Bottle,” would return a treasure of love!

    Kind regards,
    Al

    • Charlene Marshall says:

      Hi Al,

      Thank you for reading my columns and as always, contributing your thoughts and insights. It’s great to hear from you! 🙂

      I am so sorry to hear of your skin reaction to the single, higher-dose of Esbriet though. Did they say what this would have been caused by, or that for sure it is due to the anti-fibrotic? Was it painful for you? Has the rash subsided with the interventions from your Dermatologists and primary care physician? Sorry for all the questions!

      What an amazing outcome to your story of seeking out information about your birth Mother and her family in Australia, thank you for sharing. I have been to Geelong, and some of the other places you mentioned near Melbourne, Vic. I actually surfed in Geelong before I fell ill. The conclusion of your comments gave me goosebumps as well Al, and I am glad to hear you were able to seek out the information you needed to learn about and feel more connected to your Mother’s family. What a gift to treasure!

      Thanks again for writing…. it certainly has started me day off on a wonderful note!
      Warm regards,
      Charlene.

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