June 27, 2018 at 7:36 pm #13212
Living with a chronic lung disease, such as pulmonary fibrosis (PF) is tough and can be physically, mentally and emotionally exhausting. Adjusting to changes and constantly re-evaluating our abilities is an ongoing learning for those of us living with PF. At least, this has been an ongoing task for me as it certainly is not something that I have mastered yet, despite living with this disease for 2+ years now.
Some of the things I used to do before my diagnosis of IPF are no longer possible for me, plain and simple. There are other things that I can do occasionally, and depending on how I am feeling (ie. whether I’m fatigued, struggling with a cold or what the weather is like) and even more things that I can still do the majority of the time but not always. It is the latter two tasks that leave me continually re-evaluating what I still can do with IPF and what I cannot.
Specific tasks aside, there are many life-type responsibilities that I am constantly re-evaluating and trying to focus on whether I can do them or not, how often and what might the risk me to my health and happiness. Here are some of those “bigger picture” type things:
- Physical versus mental and emotional energy expenditure: “Pick your battles.” Sometimes I am frustrated with processes at work, and other times with what people say, do or how they behave. I often have to take the time to re-evaluate the physical energy that I expend in resolving my concerns, plus the emotional and mental energy. Sometimes it is easier just to let things go.
- What brings you happiness versus what doesn’t: I have to admit that I’ve never been good at putting myself first, however, in the last few months I’ve been committed to doing this. If I don’t want to do something, or if it is something that won’t bring me happiness, I choose not to do it. As all with IPF know, life is too short to be doing things that make you miserable. I wish I didn’t have to be diagnosed with IPF to learn this lesson.
- What you’re willing to compromise: I am no longer willing to compromise my physical health and forego rest or personal time for the sake of someone else. I need the time to rest and recuperate, and I enjoy my quiet time to work on my tasks and projects. I often have to re-evaluate how much I am compromising for the sake of others and make changes when there is an imbalance.
Are there specific tasks (ie. sports or hobbies) that you re-evaluate your ability to complete since your diagnosis of IPF/PF?
What about the broader-picture things, similar to things I’ve listed above: are you constantly re-evaluating those as you learn to live with a chronic lung disease?
June 28, 2018 at 5:53 am #13216Dave-Wendy BarrerParticipant
I think the largest and fasted changed that occurred was golfing, a social outing that I now realize I took for granted. Thinking it would be a hobby I would do in retirement and into my 90’s, being part of a league with 100 other guys for years…. Sunday morning with a few close friends, fun tournaments and annual trip to Florida during the long cold winter for a week of daily golfing and drinking with a few buddies. This is creating a tremendous hole that will be hard to fill.
Its a huge hit to a weekly routine and future vision that seems to be changing monthly. After so many years participating, I expect its something that I may never get over.
I have however… like you eloquently wrote in “quite time with tasks and projects”….. dug into more art projects with sketching and design, its a great way to occupy your mind and accomplish more compact shorter term goals one picture at a time.
I wonder if there is a way for everyone to post their projects I would love to see the creativity…if the web designers are reading, a drag and drop option would be amazing. Im still getting use to the forum…maybe it exist already.
- This reply was modified 3 years, 5 months ago by Dave-Wendy Barrer.
June 29, 2018 at 7:45 am #13236
Thanks so much for taking the time to respond to this thread, I am really curious to hear what others have to say about this topic. Sometimes re-evaluating what I can/cannot do as a result of IPF feels a bit redundant to me and I wonder if I am the only one doing this, or if I am just giving myself more ‘mental’ work (ie. things to think about).
So sorry to hear about the loss of your beloved golfing hobby, that has got to be so tough! My brother is a golfer and I know how much he enjoys it, beyond just the actual game but the social piece is so important for him too so I can understand why it would leave such a hole. Can you participate or play golf at all right now Dave, or has it become too difficult in general for you? Sorry about this loss, I felt the same way when it came to my hockey team.
Glad to hear you’ve invested some time and energy into “quiet hobbies”… this was a saving grace for me! I’ve re-established and found my love of art, scrapbooking and home do-it-yourself (DIY) projects as a result of my illness and these have brought me a lot of joy. They don’t compare to the social and physical activity that my love of playing hockey brought me, however, it is still something I am glad to have. Glad you were able to find some joy and passion in this as well.
This is a great idea Dave re: patients posting their projects! I think I’ll create a forum about this, where folks can upload the projects they’ve been working on with IPF/PF and share with others in this forum. I know many folks have connected with me, also saying that they have begun working on quieter hobbies since their diagnosis and I know we have some talented photographers in the group. I’ll create that forum today and make sure I post a link to it. I don’t know how to change the ability to add photos as a ‘drag and drop’ but I can link instructions on how to add photos successfully to a forum. 🙂
June 28, 2018 at 11:08 am #13229gilParticipant
“What brings you happiness versus what doesn’t: I have to admit that I’ve never been good at putting myself first, however, in the last few months I’ve been committed to doing this. If I don’t want to do something, or if it is something that won’t bring me happiness, I choose not to do it. As all with IPF know, life is too short to be doing things that make you miserable. I wish I didn’t have to be diagnosed with IPF to learn this lesson”
Similarly, I have an “Absolute No List” of things I will no longer accept such as: tolerate gossip; be around people who are angry or negative; do things simply to please others when it isn’t something I want to do; etc… I got the idea for the No List from my niece who got it from a book by Cheryl Richardson… We all have Lists of goals we want to do and I found it helpful to also have a list of things that are no longer acceptable either because it increases my stress or because I end up doing something not good for me or something that I would rather spend the time doing something I like.
Also, as Dave Wendy above, I do shorter term art projects and when IPF inhibits certain hobbies I replace the activity with something I can do.
June 29, 2018 at 7:50 am #13237
As always, it is SO great to hear from you! How have you been doing? I’ve been thinking of you and hoping you’re doing well. Thanks for contributing to this thread and getting in touch with us. Any updates on your move?
I really like the idea of an “absolute no list” and I think I’d feel less guilty if I wrote out the list proactively and stuck to it, as opposed to reactively just saying no to something. It is a good idea – do you remember the name of the book by Cheryl Richardson, by chance? I struggle with saying no to people, and just don’t want to do this repeatedly where people stop asking me for things but like you, I don’t want excess stress and I don’t want to lose out on time doing things I enjoy. Do you mind if I write a forum post about this, giving you the appropriate recognition? I think so many others need to know about this “absolute no list” and you wrote about it so eloquently in your response to this thread. Please let me know.
Also, Dave shared a really good idea: opening a forum on this site where folks can upload the quiet hobbies or projects they’ve started while living with IPF/PF. I thought maybe you could add some of your photography or the other projects you’re working on? I’m going to start the forum and I’ll add a few of my favourite things I’ve done to get us started.
Thanks again for connecting Gil, it’s great to hear from you!
Wishing you well,
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