This topic contains 9 replies, has 6 voices, and was last updated by  Lorraine 3 weeks, 1 day ago.

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  • #12496
     Charlene Marshall 
    Keymaster

    As an IPF patient, I find responding to the question: “how are you feeling”, both exhausting and frustrating.

    I understand that the intention behind this question is out of concern and genuine interest in how I am doing while living with a life-threatening lung disease at 30 years of age. However, the impact of this question sometimes takes more out of me mentally than what it is worth. I explain this in more detail in my column posted below. In summary though, I find my response to “how are you feeling”  changes or is tailored to the audience that is asking, despite the fact that how I feel does not change no matter who is asking.

    Recently I spent time with extended family members who all ask me how I am feeling. Mostly my responses were that I was doing “ok”, or “pretty good”, because who really wants to hear about my regular struggle to breathe? My answer is usually a cross between not wanting to burden others with the negativity of my illness, or just not wanting to talk about it because most others’ cannot understand (and I am glad, because it means they don’t have PF).

    How do you respond to the infamous question: “How are you feeling”, when the answer can change from moment to moment? I’d love to hear from you!

    Here is the link to my full column on responding to this question, and why I find it so difficult: https://pulmonaryfibrosisnews.com/2017/10/05/ipf-my-emotional-trigger-responding-asked-how-are-you-doing/

     

     

  • #12511
     Tom Nicholas 
    Participant

    I now respond, “I am stable, and that is the best I can be.”

  • #12522
     Charlene Marshall 
    Keymaster

    I really like that response Tom!

    It is short, to the point and honest…. a good answer for everyone, I think! I’ll try that next time someone asks me how I am doing. I appreciate your sharing it 🙂

    Warm regards,
    Charlene.

  • #12557
     Timothy Middleton 
    Participant

    What can you besides “I’m doing okay.” You can’t explain anything because people just ask more questions like how and what is it. They don’t underhand and it isn’t worth your time explaining.

    • #12567
       Charlene Marshall 
      Keymaster

      Hi Timothy,

      Thanks so much for your reply, and I do agree: what else is there to say sometimes?
      Usually the response you mentioned “I’m okay” is what my default answer is, because I don’t have any other answer. They really don’t understand what it is like to struggle to breathe, and I am glad they don’t, but as a result, my fear is that anything I say could be perceived as whining/complaining. I don’t know if people would look at it this way, but that is my fear if I were to truly tell people how I am doing when they ask. I think people also don’t understand that usually the struggle to breathe is a constant battle, it isn’t like today I am not doing well and tomorrow I’ll be fine. Unfortunately PF just doesn’t work that way …

      Thanks for contributing your thoughts, and I hope you’re doing alright.

      Warm regards,
      Charlene.

  • #12597
     Eric Cummings 
    Participant

    Hey Everybody, I tend to use “Well I’m on the right side of the grass and I’m still suckin air” so  today is a good day🤠 It sets a lighter mood to the whole thing.

  • #20967
     Pearl Christine 
    Participant

    Hi am new to this site and have been trying to navigate a reply to a lovely post by Lorraine to me via the How are you Feeling topic, , don’t know if I`m in the right area but have scrolled to where I could find the topic. so here goes,

    Thank you so much for your kind post Lorraine, 3 weeks ago when I was diagnosed with LF (Drs nor sure yet if it is idiopathic or auto immune, am waiting for more blood tests doing)I went online to search for support, updates and help etc. I found this one. It seemed to be the most supportive and helpful of any I could find even though our NHS is good (I live in the North of England) So glad you were able to find some comfort from Wendy`s post about the Self Compassion site, will be visiting it myself. As a retired RN and almost 80years of age I know what scared and apprehensive meant for my patients but feeling it yourself is a whole new ball game! and hope that the Guided Meditations helped you. I know how much a good therapist can help in a time of distress and pain. Saw one some years ago for a past and painful episode as a young girl, the experience and care she gave was invaluable at the time and have taken away from that many lessons and applications which I use to this day. It must be hard as well having to take care of your elderly parents, do you have any siblings who could help bear the load so to speak? From exploring this site I can see that there is much support and help to turn to when you need and I hope you have found a counsellor who can support and help you on a one to one basis.
    I am learning that at this very early stage that coping with this on a daily basis is like eating a large elephant, one small bite at time, one day at a time. Kind regards to you and to all who are coping with LF
    Christine (known also as Pearl but prefers Christine)

    • #20990
       Lorraine 
      Participant

      Hi Christine: And yes this forum and its members are very helpful and supportive, bar none. And the level of information-sharing is outstanding and greatly appreciated.

      Thank you for your kind and supportive response. Unfortunately, I do not have anyone else that can step-up. So far we are doing well … and I hope and pray that I can continue to help my parents and aunt. What weighs on my mind and heart of course, is if I cannot.

      I will meet my counselor next Friday, for intake and then start my regular session in mid-September. I hope it is a good fit and helpful — I am ready!

      On an average, The Guided Self-Compassion Meditations (MP3) recordings are about 20 minutes long. I practiced several times over several days and it did help.

      I like your advice, “I am learning that at this very early stage that coping with this on a daily basis is like eating a large elephant, one small bite at time, one day at a time.,” I will try that philosophy.

      Best wishes and with appreciation,

      Lorraine

  • #20981
     Charlene Marshall 
    Keymaster

    Welcome Christine!

    Thank you so much for your reply, and trying to get in touch with Lorraine ( @lorraine ). I’ve tagged her here so she will see your note, thank you for taking the time to read it. Warmest regards, Charlene.

    • #20991
       Lorraine 
      Participant

      Thank you Charlene for tagging me. Wishing you the best.

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