4 habits that help me manage my lung disease
These strategies enable me to stay compliant with my IPF treatment regimen
Living with a chronic illness is a lot of work. Sometimes I liken it to a full-time job because it requires so much daily effort. Medication administration, doctor appointments, and symptom tracking are just a few responsibilities associated with disease management. Prior to my diagnosis of idiopathic pulmonary fibrosis (IPF) in 2016, I had no idea how challenging it was to live with a chronic illness.
I’ve learned a lot about myself since then. My illness has forced me to reflect on what brings me joy and what doesn’t. Living with IPF, a chronic and debilitating lung disease, leaves me physically and mentally exhausted most of the time. As a result, I only have time and energy for things that fill my cup. This has actually been a blessing.
In addition, IPF has also forced me to learn new habits. Put simply, I can’t do everything I used to do because I no longer have the energy or mental capacity. In order to accomplish everything I need to do, especially in terms of disease management, I’ve established certain beneficial habits.
Following are four habits that help me manage IPF:
1. Structuring my time
Between social commitments, managing a household, and growing in my career, my days are chaotic and full. Not working isn’t an option for me because a chronic illness brings numerous expenses. If I didn’t structure my days using both an electronic and handwritten calendar, I’d struggle to balance productivity and rest.
This has changed how I think about my free time and helped me prioritize activities that allow me to live well with IPF, such as exercise and my inhaler regimen. If I didn’t build disease management into my schedule, I’d likely find an excuse not to do it, which would be detrimental to my health.
2. Planning ahead
While it likely drives my friends a little crazy, I always want to know what our plans are well in advance. This allows me to plan for meals and breaks, especially when we’re out for a long chunk of time. One of my IPF medications, Ofev (nintedanib), can result in some terrible gastrointestinal side effects for me, especially on an empty stomach. But I can mitigate those side effects by coordinating my mealtimes and resting after physical activities.
3. Preserving quiet time
Prior to my diagnosis, I considered myself an extrovert. However, I now believe I’m an introvert. I can no longer keep up with my peers and am too tired to do much in the evenings, especially since my career is so intense. Preserving weekday evenings for recharging and spending time with my dog allows me to keep working full time. Thankfully, I enjoy time on my own and have made my home a calm and tranquil environment that is conducive to rest.
4. Multitasking
While managing a chronic illness involves many responsibilities, who says they can’t be made enjoyable? Oftentimes, when I have to do breathing treatments as part of pulmonary rehabilitation, I pair them with another task. At home, it’s not uncommon to find me listening to a podcast I’m behind on while exercising, completing my breathing treatments, or taking my medications. This habit allows me to comply with my treatment regimen while also crossing things off my nonmedical to-do list. Some weeks, I multitask to be more productive, but other times, it just makes the medical task more manageable.
What habits help you manage IPF? Please share in the comments below.
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, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
Comments
Jeannine
I admire Charlene and thank her for all her help and commitment to us. Thank you Charlene & God bless you
Paul Caden
you are a real inspiration to us all (no pun intended) :)
Margaret
Beautifully written and all so true.
I’m trying to slow down. It’s very hard.
Thank you
Libby Fisher
Thank you Charlene for all you have added to this website, all the information, helpful hints and strategies for coping with this disease. You have also given everyone hope through your indomitable spirit!!
Patrick Norton
Thank you for your wonderful comments and suggestions.
Marti Darling
Thanks for speaking up on this. I have been dealing with these issues for some time now. It makes sense but having to draw back from thinks that you feel responsible for and happened to enjoy is tough. I do focus on what brings joy and I am very grateful for those around me who give support and humor. I am not taking OFEV now. I had a hard time with the side effects. I don't blame OFEV it is my decision to not take it. I do what works for me. I enjoy your passion for life! I have a great dog that I love to be with. He is amazing!