Pulmonary Fibrosis News Forums Forums PF Communities PF Life: Young Adults The Dramatic Highs and Lows of Living with IPF.

  • The Dramatic Highs and Lows of Living with IPF.

    Posted by Charlene Marshall on November 17, 2018 at 3:11 pm

    Back in July of this year I wrote a column about the dramatic highs and lows of living with a life-threatening illness, like pulmonary fibrosis (PF). I can’t recall if I’d written a forum post about it or not, but the feelings I captured in this column are all resonating for me again so I thought it would be helpful to share.

    I am once again dealing with the dramatic highs and lows of living with IPF, and its tough not only for me but those around me too. I know my emotions are included in this, and on some days I can feel really happy if I am having a “good” day and other days I can be absolutely miserable; both I feel are my right and are sometimes warranted. I am not too stubborn or proud to admit either that sometimes my drastic change in mood(s) are not also not fair to those around me. However, I don’t know what to do about that.

     

    Do you experience the dramatic highs and lows of living with IPF?

    If so, how do you find balance from those which can be mentally, physically and emotionally exhausting?

    Yesterday as an example, we had a meeting with my medical team and I was on the verge of tears through it all. I was mad, sad and scared and thus, I turned inwards and withdrew from the conversation. Maybe not the most effective coping method, but it is all I knew to do in the moment. By the afternoon, when I was in my own, comfortable surroundings I was much better and fully engaged socially again. The change from my morning to afternoon felt so drastic! For those around me, this might be tough to witness or understand but I don’t know what to do about it.

    Can you relate to this, and if so, how do you cope with it? 

    Charlene Marshall replied 5 years, 4 months ago 3 Members · 4 Replies
  • 4 Replies
  • patricia-hayden

    Member
    November 20, 2018 at 12:08 pm

    The highs and lows used to be more in number then now. I think acceptance has been my biggest help. This has come about slowly and is still not 100 percent everyday and probably never will be. But as I let go of the control , it becomes easier. My belief in God has helped greatly and has grown as I deal with this disease and phase of my life.
    Happy Thanksgiving to All

    Patricia

  • Charlene Marshall

    Member
    November 21, 2018 at 8:45 am

    Hi Patricia,

    Thanks so much for your reply and getting in touch regarding this topic. I always appreciate reading others’ comments and experiences with this as it is something I really struggle with!

    I think I’ve come to accept my disease pretty well also, and as you say it does take time: some days are better than others, that is for sure. I do need to work on letting go of the control, as I think it’ll help my ability to cope better, and I think help with the “lows” I reference in this column. Appreciate you sharing your thoughts, and happy Thanksgiving to you!

    Warmest regards,
    Charlene.

  • arlyn-thomson

    Member
    November 23, 2018 at 9:08 am

    Indeed, acceptance is very important, and faith in my superior power is also very helpful. I’ve also found that Pulmonary Rehab has shown me that I’m not completely at the mercy of this disease. Pulmonary Rehab has taught me that I have some control over how I feel, both physically and mentally.

  • Charlene Marshall

    Member
    November 24, 2018 at 9:52 am

    Hi Arlyn (I love your name by the way!!),

    Thanks for joining the PF forums and responding to this topic. I couldn’t agree more about the importance of acceptance, and I know a lot of people have found that or been comforted by their faith. Really happy to hear your Pulmonary Rehab program is also going well, are you doing the program through your local treatment center or doing it privately? I found Pulmonary Rehab very helpful for me as well, both physically and mentally as it really soothed my anxiety when it comes to feeling short of breath. Really glad it is helpful for you too! Thanks for writing and sharing your experience Arlyn.

    Take care,
    Charlene.

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