I’m Feeling Vulnerable as My PF Progresses

I’m Feeling Vulnerable as My PF Progresses

Just breathe, passionate help for the PF journey

I’ve been feeling vulnerable lately. I feel vulnerable having pulmonary fibrosis (PF), being disabled, using supplemental oxygen, and being ever-increasingly more dependent on others.

What do I mean by vulnerable?

Oxford English Dictionary defines “vulnerable” as “exposed to the possibility of being attacked or harmed, either physically or emotionally. A person in need of special care, support, or protection because of age, disability, or risk of abuse or neglect.”

It’s hard to be always worried about having enough oxygen to breathe. I often get kinks in my cords, have to check oxygen supply wherever I go, and deal with unexpected oxygen delivery problems.

I’m grateful to remain able to leave home to run errands, attend doctor’s appointments, and go on dates with my husband. However, it is a lot of work to make it happen, and this makes me feel vulnerable. I have to be vigilant about my oxygen, and so I always bring more tanks than I think I’ll need.

I had lunch with a friend recently, and I enjoyed our time together. At the same time, I was distracted as I checked my tanks to ensure I had enough oxygen and used an oximeter to check that my oxygen saturation levels were OK. I couldn’t be fully present with her, and I ended our lunch by letting her know I needed to leave to make sure I had enough oxygen to get home. Ugh!

It’s so hard to deal with all of this. Do you know what I mean? Sometimes I’d rather not leave home with all the hassle that’s required.

More dependence

Slowly but surely, I need more help around the house. I don’t have trouble accepting help; in fact, I’m grateful for it. It’s just hard to adjust to my reduced capabilities. I had a rough week last week when I threw out my back while moving something heavy. I upped my oxygen to make sure my oxygen levels were above 90 percent. My husband does so much for me, and I didn’t want to ask him because I thought it would be OK. It wasn’t.

I spent most of the last week in extreme pain and getting treatment for my injury. I’m better now, but I need to accept that I should do less and less, even if that makes me feel vulnerable and uncomfortable.

A balanced outlook

I strive to be balanced about the hardships of this diagnosis, as well as the challenges of living with pulmonary fibrosis. I try to live life to the fullest and be grateful for every day and every breath. At the same time, I try to be real about the vulnerable emotions and hardships that I am going through.

I’ve found that facing my painful emotions helps me to grieve and to accept reality, which then helps me to come up with solutions. As a therapist of 30 years, I found that people who didn’t allow themselves to grieve stayed stuck, and became depressed and anxious. It’s hard to let ourselves feel the feelings, but it makes room in our hearts for what we have to be grateful for, and what we need to do to make our lives as satisfying as possible.

My faith helps me as I reach out to God for strength, guidance, and wisdom. Here’s a video I made to remind me to ask Him for help.

I hope this has been an encouragement to you as you deal with the challenges that PF brings.

I’d love to hear from you

When do you feel the most vulnerable? What helps you to get through those challenges? How do you keep a balanced perspective?

Please leave a comment below or on social media.

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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.

14 comments

  1. Julie A Froblom says:

    I have seen ads for those machines that you can easily go out with that produce oxygen so you don’t have to worry about having enough. They are smaller and more compact, but I guess we have to pay out of pocket for those. Health insurance or medicare won’t cover those I don’t think. They should be available for everyone.

    • Hi Julie,
      I used to own the machine you mentioned. I had mine for the first two years, and it was great. Unfortunately as my PF has progressed that machine doesn’t put out enough oxygen to meet my needs. They only go so high. I have to use liquid oxygen now, because it delivers 10 lpm which I need when walking. Yes, I wish everyone could get them.

  2. Hi Kim!
    Thanks for this. I believe the grief and related anxiety can also be applied to our spouses & families.
    I was diagnosed with IPF a little over 3 years ago and am now on the waiting list at UCLA for a transplant. 6 weeks ago I had to move to the Los Angeles area to be within 2 hours of the hospital at all times. My wife and family are in Oregon. The separation is difficult. We are a very close-knit family, and before this my wife and I hadn’t been apart for more than a couple days – we love and like each other! She has been able to visit twice, and will again soon, but she has been experiencing anxiety – and it’s mostly due to her feeling like she has to “stuff” her grief around me and the family. She knows it’s not healthy, and that she has had her “leaky” moments – but to fully get out a good, deep cry has eluded her at this point. We both know it will be good for her, but that breakthrough hasn’t come yet.
    We are people of strong faith as well. We don’t know what the future holds, but we know who holds the future!

    • Patty says:

      Hi , My husband was diagnosed with IPF 2016. He is now using oxygen when doing strenuous things. We did buy a Inogen . Yes they are a bit pricey . But if you can afford to put out the money, it makes a big difference. Thy run around $2000. Steve I love that you are concerned with your families feeling . It is a rough road for you and them.I started to journal my feeelings. It helps to get those feelings out. And like you we are strong in our faith. One day at a time .

      • Hi Patty, Thanks for your response. What a great idea to journal your feelings. So glad it helps along with the guidance and comfort of our faith. Blessings to you and your hubby.

    • Hi Steve, Thanks so much for your comment. Wow, what a huge commitment you and your family are making in preparation for a transplant. I know it must be hard on all of you to be apart, but your life is worth the fight! I just said a prayer for you and your family. Our strong faith helps so much with all the stress and uncertainty that lies ahead. Many blessings to you.

  3. Carole says:

    Hi. I truly understand what you are saying. I do have a portable 02 machine that I can charge in my car so that helps me a lot when I go out shopping and such. I do find myself leaving it in the car when we go out to eat and I am just going in and sitting down. My numbers will stay pretty decent then. I guess I am still in denial somewhat. I recently got my first infection from I don’t really know what except it is not pneumonia but it is bronchitis so this sets me back a little. And since I also have Pulmonary Hypertension anything that hurts my lungs also puts more work on my heart so I’ve been down somewhat. And the meds I take for PF compromises my immune system. Anyway, you might look into a portable machine…..mine is Inogen. Medicare covers it if you are of age for that. I am 74. Good luck and hang in there. New discoveries are made every day!!!

    • Hi Carole, Thanks for the encouragement about the machine you use. I had mine for the first two years. Unfortunately as my PF has progressed that machine doesn’t put out enough oxygen to meet my needs. They only go so high. I have to use liquid oxygen now, because it delivers 10 lpm which I need when walking. Good luck to you too!

  4. Mike says:

    Things are done quite differently here in the UK. I went through six years of this with my wonderful wife until she died almost threee years ago.
    I’m not going to get into a discussion about “god’s” role in this because you wouldn’t like it, but one thing I must mention on a practical level is your remark about “kinks in cords” – I take it you mean your oxygen lines?
    They should not kink, or if they do they should not become occluded because they should have 3 ridges running down the inside of the tube – this makes it impossible for the flow to be stopped.
    I am not sure how your supplier works, but I suggest you ask – oxygen tubing should be safe.

  5. Judi Zoboli says:

    I totally concur with all you’ve shared. It is difficult, and I’m alone, which makes it even worse. Thanks for sharing your thoughts and feelings…it does make things a little better.

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