This topic contains 6 replies, has 3 voices, and was last updated by  Mark Koziol 3 months, 2 weeks ago.

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  • #18708
     Mark Koziol 
    Keymaster

    As we suffer through pulmonary fibrosis (PF) we prioritize taking care of our physical symptoms, but how many of us also take care of emotional well-being? I recently came across an article from the National Institutes of Health (NIH), titled “Your Healthiest Self: Emotional Wellness Toolkit.” As patients with pulmonary fibrosis, our emotional well-being is inevitably affected by our disease. Along with everyday stressors we encounter, we also have the disease related stress factors we must deal with. I recently wrote a column for Pulmonary Fibrosis News; which will be published on Wednesday, April 24 2019. The column details how the thought of death once consumed me. These feelings have since subsided but they overtook my whole thought process up until my transplant. The thoughts of death still roll through my head at times, but they don’t consume me as intensely as they did before.

    I am not big on talking about my feelings or do I have a “woe is me” attitude; I tend to keep things to myself. The emotional toolkit offers strategies to cope with PF,  and the majority of coping mechanisms can be done by yourself … you do not have to relay your message to someone else! I like this publication particularly because of this reason. I played college football at YSU and my head coach was Jim Tressel. He is a great mentor and one of the things he would stress to us is: you have to love yourself because if you don’t love yourself no one else can. I believe in this wholeheartedly.

    Please read the article, the NIH publishes great material and resources.

    I am curious to learn strategies some of our forum members have used to strengthen your emotional well-being?

  • #18734
     John L 
    Participant

    Thanks Mark…I have been on an emotional roller coaster since this diagnosis earlier this month. Been glued to the internet. Trying to manage my acid reflux. Deciding between Esbriet or Ofev? What to eat, or not to eat? Learning as much as I can is also draining at times & wearing me down. Grateful to this forum for some identification with others that have been dealing with this horrible disease & have been coping much longer then me. You guys give me hope! In time, i’m hoping to make the needed adjustments to bring more balance into my life. Keep doing what you’re doing Mark. You are an inspiration!

    • #18736
       Mark Koziol 
      Keymaster

      Hello John, thank you for reading and commenting on the topic. John, everything is a process, you will manage through this. With regards to the Esbriet-OFEV debate, you have to look at the pros and cons of each medication. I chose the OFEV because I love being outside and Esbriet would inhibit my ability to stay out for long periods. You may have to try each one. The eating thing; from your picture you look like you are in pretty good shape. Just keep doing what you are doing. There really is no special diet to follow for people with PF. I had to lose 80 pounds so I went about it differently. Remember to take care of your self and only do what you can and get your rest. Keep in touch. Best wishes, Mark.

  • #18926
     Wendy Dirks 
    Participant

    I read the tips from NIH but to be honest, it’s pretty difficult to be told to be active, spend time with friends, etc., when you can’t walk more than a few feet without stopping to catch your breath. I know I need to prioritise exercise more than I do – I can go swimming, or to a follow up class post-pulmonary rehab, or a wonderful chair yoga class and I find myself just not doing it. Why? Just getting up and getting dressed and organised is so much work! Today I was going to do all kinds of things and instead, here I am not even dressed! (I did do some work at the computer – yes, actual work). I need a shower but I have come to hate showering so much that I dread it. So before some of us can follow all these tips, we need some motivation to just put our clothes on! When I’m like this, I start feeling horribly guilty and that makes me feel even worse. I give myself pep talks, telling myself that it’s okay, I’ll shower and dress tomorrow, it isn’t the end of the world, yes, it’s okay to take a nap. But it’s difficult.

    • #18933
       Mark Koziol 
      Keymaster

      Hello Wendy, sorry I didn’t respond to your comments. It ok not to do anything. We can’t all be ON everyday. We all have gone through the same emotions as you. It’s ok if we just wake up and breath! This is a nasty disease we are subjected to. Naps are great and healthy for you. Just for us to get enough air, our bodies are working overtime just to get enough oxygen. This is naturally going to exhaust us. Wendy do what you can do. Thank you Mark.

       

  • #18927
     Wendy Dirks 
    Participant

    Oops, just realised I haven’t shared any positive strategies, just complained… sorry.  I do try and meditate more or less regularly. 🙂

    • #18929
       Mark Koziol 
      Keymaster

      Hey, we are allowed mistakes. Thank you. Every time someone comments, someone else can gain knowledge. Thank you Wendy. Please keep making mistakes and telling forum members wonderful things to do assist them in their battle. Best wishes. Mark

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