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    • #12983

      Many of you shared a passion or love for music following a post I made about singing and how it can be beneficial for our lungs as patients living with pulmonary fibrosis. Music can be therapeutic to so many people, whether it is playing an instrument or listening to powerful lyrics of a song that resonates with you. Sometimes, lyrics to a song can reflect how you feel so well that its almost as though the song was written for or about you.

      Throughout my own journey with idiopathic pulmonary fibrosis (IPF), I’ve turned to music a number of times and all for different reasons. Sometimes I use music as white noise, with the goal of drowning out all of my thoughts pertaining to this disease, and other times I blare it loudly in the car when I am driving somewhere, also in an effort to not “hear” myself think. Another reason I’ve turned to music throughout this journey is to feel connected to the lyrics of a few specific songs that seem to resonate with me and give me strength when I need it.

      As I was listening to them on my drive home tonight, I thought I’d share them with members of this forum in case they also bring you strength and comfort. I enjoy several genres of music and thus, I recognize that the songs I list below may not be favourites of yours due to the wide array of musical genres out there. However, perhaps you too will find some comfort in the lyrics of my favourite songs. Here they are:

       

      • I Hope You Dance by Lee Ann Womack. This has been one of my favourite songs since I was a little girl. It sounds morbid, but if anything ever happens to me (or I suppose, when it does…) I want this song played. It is so uplifting to me, and reflects so many of my wishes for my friends and family. I can’t even choose some of my favourite lyrics out of this song, because I just love the whole song. If you’ve never heard it, it is a good one to listen closely to and try to live out the lyrics of the song.

       

      • Fight Song by Rachel Platten. This whole song talks about fighting back against something (in my case my illness), being strong and not giving up. If you’ve never heard it (it is a popular radio song), this is also one you should listen to, in my opinion, to encourage you during hard times with PF/IPF

       

      These are just two of the songs I turn to when I feel as though I am struggling and know they will lift my spirits a bit. I have many others as well, but before listing the rest of them; I am curious to see if any of you listen to the same ones!

      What songs resonate with you, or give you strength while living with IPF/PF? What is it about them that you enjoy: a particular lyric, the overall relevance or does it have significant meaning to you? I’d love to hear from you!

       

       

    • #13015

      I love the song Great are you a Lord by Sons and Daughters. Here are a few of the lyrics:

      You give life, You are love
      You bring light to the darkness
      You give hope, You restore
      Every heart that is broken
      Great are You, Lord
      It’s Your breath in our lungs
      So we pour out our praise
      We pour out our praise
      It’s Your breath in our lungs
      So we pour out our praise to You only

      Thank you so much for all your articles Charlene.
      You’re an inspiration to us all.

      • This reply was modified 2 years, 3 months ago by Charlene Marshall. Reason: formatting
      • #13028

        Hi Karen,

        Thank you for sharing one of your favourite songs that resonate with you! I’m excited to hear from others about this topic actually, I think everyone’s musical preferences are often so different.

        I really enjoyed reading the lyrics of this song, and will have to give it a listen. Most definitely relateable to me as a patient with IPF, and likely to any other patient living with a chronic illness as well. Thank you for sharing and for your kind words, they are so very appreciated.

        Warm regards,
        Charlene.

    • #13018
      Mike Sturgill
      Participant

      Great are You Lord! Awesome song, one of my favorites. How powerful it is especially on those days when I don’t struggle with breathing as much. I perform with the worship music team at my church and this song in particular can raise my spirits and help me appreciate each and every breath.

      • #13029

        Hi Mike,

        Thank you so much for replying and sharing one of your favourite songs with us! I mentioned above that I am excited to hear from others on this topic, so I appreciate your taking the time to share this with me.

        It is so important for us to have things that are uplifting to us, and I am glad the lyrics of this song are able to do that for you. I hope you can continue performing with your worship music team for a long time to come 🙂

        sending you best wishes,
        Charlene.

    • #13045
      Alfred Arnold
      Participant

      After being diagnosed with IPF it made me think of my mortality.

      I told all members of my immediate family that I would like “The End of the End,” by my favorite musical artist – Paul McCartney played at my funeral. The lyrics are uplifting to me and I would hope comforting to those I leave behind:

      At the end of the end
      It’s the start of a journey
      To a much better place
      And this wasn’t bad
      So a much better place
      Would have to be special
      No need to be sad

      On the day that I die I’d like jokes to be told
      And stories of old to be rolled out like carpets
      That children have played on
      And laid on while listening to stories of old

      At the end of the end
      It’s the start of a journey
      To a much better place
      And a much better place
      Would have to be special
      No reason to cry

      On the day that I die I’d like bells to be rung
      And songs that were sung to be hung out like blankets
      That lovers have played on
      And laid on while listening to songs that were sung

      At the end of the end
      It’s the start of a journey
      To a much better place
      And a much better place
      Would have to be special
      No reason to cry
      No need to be sad
      At the end of the end

      • This reply was modified 2 years, 3 months ago by Charlene Marshall. Reason: formatting
      • #13060

        Hi Al,

        Thanks for sharing and as always, it is wonderful to hear from you!

        How are things going with you, any update on the anti-fibrotic medication change as a result of the Esbriet reaction?

        Thank you for sharing the lyrics of your favourite song, I’ll definitely have a listen to it as I enjoyed reading through the lyrics you posted. I have thought about my mortality as well since being diagnosed with IPF, and sometimes think about what I want read or played during my funeral. That being said, I haven’t really allowed myself to go there as it still feels too uncomfortable for me. I know it is important though, so likely with time…

        Thanks again for sharing and I hope you are doing well!

        Kind regards,
        Charlene.

    • #13077
      Alfred Arnold
      Participant

      Hi Charlene,

      Good to hear from you. I hope you have recovered from your recent setback.

      I am still battling with the itching and scabs from the Esbriet adverse reaction – very annoying and difficult to sleep. I am seeing improvement – definitely on th mend. Stopped taking Esbriet on 5/31. Will not make a decision on OFEV until my next visit in July. Discussed having another lung capacity test before going on another oral medication. Esbriet caused my liver enzymes to be significantly elevated.

      Another song you might enjoy, which I added to my favorites playlist – Mull of Kintyre. Written by Paul McCartney and Denny Laine of the band Wings. It was the biggest hit in Britain where it became the 1977 Christmas number one, and was the first single to sell over two million copies nationwide. It’s an ode to the natural beauty of the picturesque Kintyre peninsula in Scotland.

      Kind regards,

      Al

      • #13087

        Hi Al,

        Thanks for your reply, and as always for your kind words!

        I am still recovering, although doing much better. If I could rid this cough, and the feeling of “heavy lungs” (the only way I know how to describe it) soon I’d be much happier! Thank you for asking though, I am definitely on the mend 🙂

        Ah so sorry you’re still experiencing the symptoms of the reaction, that must be so frustrating! I hope the relief options the doctor gave you, if any, have been helpful even to be able to rest/sleep comfortably. That has been awhile now, hasn’t it… almost a month, as you said you stopped on 31/5. Did they give you a timeline in terms of how long it would or might last? I’ve heard of this symptom of Esbriet as well, the elevated liver enzymes. Let us know how you make out re: the discussion of starting OFEV. I am on this medication and thankfully have been quite side-effect free as a result of it.

        Thanks for sharing another song option for me – I’ll definitely look it up! It has to be good if it sold that many copies. I am also looking at going to Scotland this coming September, pending I can travel, so it seems fitting! Have you ever been over to that part of the world? You know me and my love of Australia so I am currently deciding if I should head over to Europe (I’ve never been) or go back “home” to visit friends in Australia who are more like family. Still to be decided, and hugely dependent on cost of flights too! It is on my “to-do” list this weekend to look at flight options/cost and make a decision by the end of the month…

        Thanks for writing, I am going to go pull that song up on Youtube now!
        Cheers,
        Charlene.

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