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    • #15620

      Recently PF forums member Chuck Harrison and I were having a discussion that we’d be interested in hearing from others about. Chuck had explained to me that sometimes he feels the need to rebel against his lung disease, IPF, and asked if I’ve ever experienced this as well, which I definitely have.

      I can only speak for my experience with this, but I think the “rebelling” I have against my illness is to take back some control, because so much of living with a life-threatening illness is out of my control. I don’t intentionally rebel and do things that I know will cause me harm, but sometimes I just don’t want to do what I am supposed to as a patient with a chronic illness. These things include:

      • Travelling: I know travelling can pose a risk to someone living with a lung disease, especially for someone who is also immune-compromised, but this is something I refuse to give up until I absolutely have no choice. I’ve always wanted to see the world, and my biggest fear after being diagnosed with IPF was losing my ability to travel, so in a way I am choosing to “rebel” by continuing to travel as a patient with IPF.

       

      • Eating certain foods: as an eventual transplant candidate, I am followed by a dietitian who helps me with healthy meal ideas, especially because some of the medications I am on really suppress my appetite and we all need to eat to give our bodies the energy we need to fight this disease. One of the things I’ve been told to be mindful about is the amount of sodium I consume due to a previous kidney injury, but sometimes I really want some chips or other snacks that are high in sodium. I would consider this a type of rebellion too, because I know I’m not supposed to have these foods but I occasionally eat them anyways.

       

      • Skipping medications when I want to feel well: any of you who are on anti-fibrotic medications can probably relate to the gastric troubles they can give us. Sometimes if I have a really important activity to attend, or when I really want to feel well, I’ll intentionally skip a medication dose. I know this isn’t wise, and I don’t do it often but its a way to control how I feel, which sometimes feels necessary.

       

      • Cancelling appointments: sometimes I am so tired, and our disease is incredibly exhausting so in an effort to conserve some energy I will cancel or re-schedule appointments to reclaim some time to rest.

       

      Have you ever done any of these to intentionally “rebel” against your disease and reclaim some control? Please share your experience with this with us.

    • #15659
      Chuck Harrison
      Participant

      Hi Charlene ,
      Well as we discussed about rebellion , you hit all my triggers for this act .
      Foods ( chicken wings , chips , and an assortment of others.
      Medications , I take so many day and night , that it just seems like a chore day in and day out , so there are times that I skip .
      Appointment , I’ll cancel in a heartbeat , these are times that I have to many , that’s when I feel I’ve lost control of my life and to feel that I some control left I cancel ! So it’ll be interesting to see if we’re the only two nuts on this blog . Lol

    • #15699

      Good Morning Chuck,

      Thanks so much for your reply to this topic thread, and sorry for the delay in getting back to you. I am officially home from NYC, what a wonderful time I had and I look forward to sharing some details with this special online community over the next few days. Just using some time to catch up on everything 🙂

      Really glad I nailed down your experiences of rebelling against your disease, it is definitely something I do! Everything you described are things I also do when I feel out of control and want to take a little back from my disease. Thankfully this doesn’t happen often, but it certainly does on occasion. I’m also curious to know if others experience this – please share if you do! 🙂

      Cheers,
      Charlene.

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