Reclaiming Joy on Difficult Days with Pulmonary Fibrosis

Reclaiming Joy on Difficult Days with Pulmonary Fibrosis

younger than 30

Having to deal with difficult days is inevitable for patients with idiopathic pulmonary fibrosis (IPF). The difficulty may be physical in nature, meaning our lungs cause us trouble. This complicates basic tasks such as taking a shower or getting dressed.

Sometimes a medical appointment reveals bad news, or fatigue causes heightened emotions. Patients living with IPF might experience disappointments, such as missing out on a social gathering due to our illness.

Regardless of the cause, it is important to balance the hard stuff in our lives with joy.

How do you reclaim joy following your difficult days? 

Whenever I’m having a difficult day, my close friend asks me, “What are you going to do to put some joy back in your day?”

I must admit that I was frustrated when she first asked me this question; I thought she was discounting the difficult situation I had encountered that day. At that moment, I did not want to focus on something joyful. However, I began to appreciate the question when I realized the strategy behind it.

I, like many with a chronic illness, succeed in difficult situations when I have some control. When I’m facing a painful procedure, I do better when I get to choose how I sit for it, or when it takes place. As a hospital patient, I can feel incredibly vulnerable, and when all control is taken away from me, intentionally or unintentionally, it can cause a lot of trauma.

My friend knows the importance of being given some control in a difficult medical situation, as she has seen the negative impact on me when I’ve felt like control was taken away.

Her question about reclaiming joy is about giving me back some of the control that I need to make it through tough times. And I realize that I can choose what will make me feel better and happier following a difficult appointment.

She often reminds me that reclaiming joy doesn’t have to be a grand task. It can be something small and seemingly insignificant to someone else.

I have had some physical setbacks and emotional exhaustion in the last few weeks. And so I’ve asked myself, “What can I do to reclaim some joy?” I don’t always know the answer yet, but I have compiled a list of things that bring me joy.

  • Petting my dog: Being around animals is incredibly therapeutic, and my golden retriever usually knows when I’m upset. It is hard not to feel joyful when an 80-pound fur ball sits on your lap and licks your face.
  • Crafting: I get joy from making others happy and giving back. Making crafts of some kind for other people, whether it is home décor pieces or handmade cards, makes me feel good and is not physically demanding.
  • Journaling: Getting my thoughts down on paper is very helpful, and often leads to a release of the pent-up emotions that accompany difficult days.
  • Cooking: This is something I’ve recently taken up, and it brings me a lot of joy. While this is a bit more physically demanding and I tire easily, knowing that others enjoy something I cook makes me joyful.

What hobbies or tasks bring you joy on difficult days?

***

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.

8 comments

  1. Linda Sayre says:

    How can I send this to my family. They think I am just feeling sorry for myself and don’t understand what this does to your mind, body and soul.

    • Charlene Marshall says:

      Hi Linda,

      Thank you for reading my columns and getting in touch! In order to email this column, you could copy the link in the web address bar (where you type in a website address) and paste it into the body of an email? I hope this helps if you think sending it to your family would be beneficial. It can be so hard when others don’t understand what this disease to us both internally and externally, and I hope sharing this column with them sheds them light on your experience. Hang in there, and feel free to connect any time – we’re all in this together!
      Warm regards,
      Charlene

    • Charlene Marshall says:

      Hi Gil,

      Great to hear from you! I couldn’t agree more – it is a great question, and I am so thankful to my friend for asking it. I can’t take credit for the question, it is hers but it sure has helped me reframe my thoughts on difficult days due to my disease. Glad you liked it too! 🙂

      Charlene.

  2. MaryLynn. Neill says:

    One might play the piano,listening to music is always therapeutic for me.. Photography in the morning is great…
    Reading ( getting a new book). Is therapeutic as well. Your hobbies need to intensify and concentrate on them..

    • Charlene Marshall says:

      Hi MaryLynn,

      Thank you for reading my columns and getting in touch via the comments. I couldn’t agree more about our hobbies, and focusing on them as a therapeutic outlet! The only thing I wish I could do on top of my current list of hobbies is play an instrument, as I find music so healing as you seem to as well. I am trying to learn the guitar, although it is harder than I thought. I’m so glad you have piano and find it therapeutic, as well as photography… both beautiful hobbies that can also be shared with others. I enjoy reading as well, and I’ve been doing a lot of crafting over the past few years. Being able to focus on this has been so therapeutic for me.

      Thanks again for writing and wishing you nothing but the best!
      Charlene.

  3. Dianne French says:

    I was recently diagnosed with PF. I had never heard of it and immediately begin to research it on line. I was absolutely stunned, to come to the realization, that I had a terminal disease. My family and I are still trying to sort out our choices, fears and the outcome of all of this. Finding this site, which offers comfort, knowledge and compassion is helping me face the future better. My doctor says I’m eligible for a new drug which won’t cure it, but hopefully will slow it down. I’m haven’t told anyone but my immediate family and still have to let friends know of my situation. It’s hard, because, I’m very active in many groups and have a calendar full of future events I’m chairing. . . when to end my engagements. . . that is the question. I don’t want to act too soon and yet, my fear is I’ll wait too long?
    Reading all the heart felt post here, has helped me to realize, I’m not alone and that in itself, is precious. I will seek to, find my joy everyday and to cherish my loved ones as long as I’m able to.

    • Charlene Marshall says:

      Dearest Dianne,

      I am so sorry to hear of your recent diagnosis of PF! I remember the time period after my diagnosis well, it was filled with so much shock, sadness, anger and confusion. Please lean on your close friends or family during this time, or feel free to connect to this online community for support as well. There is much to be considered with family, as you mentioned, and I am glad you have the support of others to do that. Do you remember the name of the drug your doctor mentioned you are eligible for? Perhaps some of us can help you. There is lots of wonderful support and information available on our Pulmonary Fibrosis News Forums as well, which can be found here: https://pulmonaryfibrosisnews.com/forums/

      I remember having to give up many social events as well following my diagnosis, which is never easy. My suggestion is, keep some of them, even if you need to ask for help to achieve them. This is especially true if it allows you to hang onto some normalcy throughout all of this and brings you comfort.

      You certainly are not alone and we are here for you. Hang in there and feel free to connect any time!
      Warm regards,
      Charlene.

Leave a Comment

Your email address will not be published. Required fields are marked *