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    • #33157

      The simple task of breathing should never be hard work. Unfortunately, those of us living with idiopathic pulmonary fibrosis (IPF) know that it can be hard work, and many of us wish that others would never take their respiratory health for granted.

      For those who have never had a respiratory condition and truly don’t know how it feels to be short of breath or to struggle to breathe, they often think rest is what we need. I always hear people say to me, “Charlene, you need to rest more to feel better” or “why don’t you have a rest” and I find this word triggering. While I know they are well-intended, rest does not fix the symptoms we struggle with when living with IPF. I always say to people that having this disease is not like having a broken leg, migraine or something else; rest doesn’t help because no matter what we’re doing, our lungs need to be working.

      Does anyone else feel triggered by others telling you to rest?

      If so, how do you manage it? I’m curious to hear from you!

      Stay tuned: I think I’m brewing up a column idea focused on this and will share it when its complete.

      Take care,
      Charlene.

    • #33175
      Keith Emery
      Participant

      Charlene, I agree with you entirely. Rest does not help with my IPF breathing problem. Only if I become breathless through activity and need a few moments to recover, do I see rest as helping. I try to push myself when walking so that my lungs are exercised, although I probably can only walk 100 yards before having to stop to catch my breath. Resting in a chair or bed does not help me in any way.

    • #33183
      Steve Dragoo
      Participant

      @charlene-marshall

      Hi,

      Agree 100%. My wife has said try going without the O2 (crickets…) What does help is eating very healthy, taking a basket of supplements, water, tiny exercise to condition the muscles as much as possible (I must be careful as when I do too much I pay for it with cramping later) and keep the weight off.

      Oh did I forget to mention rest? Yup…

      Stay well,
      Steve

    • #33189
      Bill Mattila
      Participant

      This is all true, but everyone is defensive about their Disability to move like they used too. You have to accept the reality of it👀. I have to think about all the rest of my problems Catheter and all no breathe. I have had problems for 15+ years and still alive and almost 80. So I like to Whine about the Doctor that did a shxxxxd job on my prostrate…… Sincerely WM

    • #33191
      Rosanne Matzek
      Participant

      What really bothers me is when friends and family make decisions on what I can and cannot do. I get excluded from social activities because they think it will be too difficult  for me.  Do they really think it is better that I am isolated at home? With my oxygen I can still do most activities.  I’ll stop to rest if needed. Please don’t make me more of an invalid than I am. Let me be as strong and active as I can.

    • #33216
      Virginia Currie
      Participant

      Rest is not a solution.  People think that I can enjoy life by staying at home and not working.  When I was working as a nurse, I’m able to cope with the side effects of coughing and shortness of breath until I became stressed from taking care of patients.  I felt I was deserving them.  I was so focused with shortness of breath and cough that I cannot concentrate with being a nurse.  I am on disability now.  I cannot be sicker than my patients.  However, staying away  causes me intense emotional distress.  Reading this forum eases my mind that I’m not alone in this battle.

    • #33223
      Christopher
      Participant

      I would just like to say that reading this forum eases my mind as well.That we are not alone in this battle,

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