Things to Regularly Reevaluate as a Patient with Pulmonary Fibrosis
For patients living with a life-threatening illness, adjusting to change and reevaluating our abilities is an ongoing task. This is because the progression of our disease causes physical limitations and restrictions and our values may change over time.
When our physical capabilities change, it is important to consider the activities and tasks we’re doing compared to what might be less physically demanding. As an example, for a long time after my IPF diagnosis, I remained chair of several committees as a volunteer. It became apparent as my lung function declined that I needed to give up these roles because of fatigue. I needed to preserve my energy for the mandatory daily tasks.
Reevaluating involvement in the tasks that take a toll on us physically is just one piece of the puzzle and, in my experience, these are easier decisions. What has been difficult for me is reevaluating my social capabilities, and how much I want and can do for others.
I used to take great joy in helping people. Now, I risk compromising my health if I put the needs of others first.
Share what abilities do you usually reevaluate while living with pulmonary fibrosis in our PF News forums!
Are there things in your own life that you’ve had to reevaluate based on your capabilities or physical health?
I’ve made a list of things I regularly reevaluate based on my capabilities.
- How much I do for others: If I am working on a project and stay up late to complete it, or feel stressed about the quality of my work, my physical health can be compromised. Having lots of tasks to do for others can sometimes interfere with my overwhelming appointment schedule as well. So, I limit how many projects I am working on for others and consistently reevaluate what that limit is.
- Physical versus mental and emotional energy: “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 reevaluate 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.
- How often you put yourself first: If you find yourself overwhelmed, frequently tired, angry or upset, I challenge you to reevaluate how often you are putting yourself first. Doing this on a regular basis is important, and yet many of us still don’t.
- 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 reevaluate how much I am compromising for the sake of others and make changes when there is an imbalance.
Join in the conversation about what you might be reevaluating in your life as a patient with IPF in our Pulmonary Fibrosis News forums.
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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.
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Comments
Dixie Rose
I'm an artist and do several festivals in the spring thru fall, now I have to have someone help me put my tent up and paintings,+ I'm a face painter and am scared to death I will have a coughing fit while painting a little kids face, so many things have to come into consideration I just have to cut back and that hurts me financially .. Dixie
Charlene Marshall
Hi Dixie,
Thanks so much for reading my columns and for getting in touch via the comments. Participating in festivals as an artist sounds like such a great hobby to get into, even if you do need someone to help put your tent and paintings up. Sometimes I do craftshows with the things I make, and also require help with the table set up, etc. It is a bit tough to accept I need the help, but I try to be in the mindset that at least I can still do these things.
In terms of the coughing and face painting, yes I can imagine that is a hard thing to accept. Do you use any puffers that even temporarily help alleviate the coughing? Perhaps taking those in advance of doing some face painting might make you feel better? I know this isn't the ideal solution though.
Take care Dixie and thanks again for connecting!
Kind regards,
Charlene.
Pauline Butler
Recently diagnosed with PF.l am struggling in this hot weather. I am currently taking steroids and Amoxicillin for another chest infection which diesnt want to clear up.l am very exhausted due to coughing..l am not on oxygen yet.!!Has anyone got any pearls of wisdom.Thank you
Charlene Marshall
Hi Pauline,
Thanks so much for reading my column and for getting in touch. So sorry to hear about the struggles in the humidity...unfortunately the heat is something that significantly impacts me as well. It induces coughing, shortness of breath episodes and I feel extremely fatigued! Likely having a chest infection is just exacerbating (or making worse) your lungs response to the heat, so I do hope once that clears up, it may be a bit easier for you. I am also regularly on steroid inhalers to manage the coughing and need to use my oxygen in the heat as well.
I wrote a column not too long ago about tips on how to manage the heat with IPF. Not sure if it is helpful for you, but if you're interested the column can be found here: http://pulmonaryfibrosisnews.com/2018/05/31/pulmonary-fibrosis-heat/
Goodluck and I'm hoping you feel better soon!
Kind regards,
Charlene.
Donald Otis
You know, the world would be a better place if we all followed this advice, sick or not. I call it ROE - our return on effort. We seem to be in a place where sacrifice is expected - we 'should' be doing things that may have no actual return to us.
As you note, for those of us with a shorter runway than others, this is brought into sharper focus. I do find that I am on that balance line where, on the one hand, I do not want to be defined by IPF, while on the other, of course, I am. I have no choice but to be. And so, my friends and family have no choice but to accept that I have limits both physically and emotionally, as well as by through I will and will not do.
I read your column all the time, and I am always torn between admiring your spirit and hating this disease even more. You do have an impact in the world; I am just sorry this is how we had to meet.
Charlene Marshall
Hi Donald,
Thank you so much for reading my columns and contributing your comments. I always love hearing from you, and find your responses very thoughtful and encouraging! You are right... about so much ... following the advice of doing things that bring you joy first and foremost is something we all should be doing. I like the return on effort (ROE) idea, and trying to let go of what we 'should' be doing, especially the things that have no return to us. I am guilty of this, and for the first time I am noticing the impact on me.
I also agree with you about not being defined by our disease, but we are regardless. I always tell people, IPF isn't like a sore back, neck, broken arm etc, in that just because we rest, it doesn't mean things will get better. Even when we're resting, we need to breathe and this is where our disease differs - there really is no way to find good relief from the difficulty that comes from not being able to breathe. I also like that you noted emotional limits, this is so applicable to me lately. I feel like I'm an emotional wreck and will admit that to people but also be honest and say I don't know why I feel this way. Sometimes I blame it on steroids, and sometimes I say I am grumpy because living with a life-threatening disease just sucks and there is no other way to put it.
Thanks for sharing your thoughts and for reading my columns. I also so appreciate your kind words Donald, thank you. I will continue to write, it is so helpful for me and being able to connect with folks through my writing gives me a new sense of purpose and meaning. Thank you again for reminding me of that.
Kindest regards and best wishes!
Charlene.
Lauraine Lagace
I am taking care of my sister who has IPF.,.does any one have the problem of nose dripping +++ at movements but completely stopping when lying down ???? And any one knows what I can do to minimize it for her ???¿
deborah daniels
Yes, I have IPF and have a constant dripping nose.
Charlene Marshall
Hi Deborah,
Thanks for getting back to Lauraine on this pesky issue. I know others with IPF have really struggled with a dripping nose since their diagnosis, and it has actually been a popular topic that patients are discussing in our Pulmonary Fibrosis News forums. The thread on the information can be found here: http://pulmonaryfibrosisnews.com/forums/forums/topic/stopping-runny-nose-using-supplemental-oxygen/
Hope this helps you :)
Charlene.
Charlene Marshall
Hi Lauraine,
Thanks for reading my columns and for getting in touch via the comments. I know it is tough to care for a loved one with IPF, so kudos to you for helping your sister through this tough time. As a patient with IPF, I've never really struggled with a runny nose but I know many patients have. This was actually a popular topic that has been discussed on our Pulmonary Fibrosis News forums, and the topic can be found here: http://pulmonaryfibrosisnews.com/forums/forums/topic/stopping-runny-nose-using-supplemental-oxygen/
I hope this information is helpful for you and for your sister to get some relief.
Kind regards,
Charlene.