Striving for a Quieter, Less Stressful Lifestyle
One of the reasons I enjoy traveling is its provided gift of reflection. While experiencing other cultures and countries, I ponder how I live my daily life.
Since getting my idiopathic pulmonary fibrosis (IPF) diagnosis, my need for control and organization has increased. It is a way that I cope as a young adult with a chronic, life-threatening lung condition.
Being in control of my medications and managing my illness gives me power over this disease. IPF robs me of physical energy, and when I don’t schedule, organize, and prioritize, I don’t accomplish what I had planned. That makes me anxious. I can’t push through when my body is too tired, regardless of deadlines.
While on vacation in Hawaii, I have observed and embraced the culture and pace of the Hawaiian Islands. On Kauai, especially, things are slower and more relaxed. I have realized that I have a deep desire for a quieter lifestyle; one that embraces time with friends, family, and doing what I love.
Like any change in habit, learning to slow down and release the need for control will be easier said than done. We know stress negatively impacts us, yet we rarely eliminate the causes of stress in our lives. As I watch people relaxing on the beach or enjoying a glass of wine on their patio, I challenge myself to think of things I can do to achieve a quieter, more relaxed lifestyle.
I hope that writing about the changes I plan to make upon my return home will hold me accountable. I will also look to the amazing online PF community for suggestions. I am going to focus on the following questions:
- Do I need an answer now? In this age of technology and instant gratification, it seems everyone wants a quick fix. I need to remind myself to have patience when working through tough decisions. I don’t need to come up with an immediate solution.
- Who can help me and what resources are available? I am fortunate to have reliable friends and family who help when I need them, though I often am too stubborn to ask. I am challenging myself to do better at this. We don’t need to feel alone. If struggling with IPF/PF, organizations such as the Pulmonary Fibrosis Foundation can assist.
- What can I do in this moment? I feel most out of control when I can’t achieve something I need to get done. My reality is that sometimes my body is just too tired. I am going to start asking myself what I can do in certain situations, instead of what I can’t.
- Will this stressor/event/challenge lead to something better? I never used to believe this, but too many things have happened to me — even on this trip to Hawaii. I am going to remain open to the possibility that whatever I feel stressed about in the moment may lead to something better in the end.
I am determined to be more intentional about how I spend my time. This couldn’t be more important than when faced with a progressive disease like IPF.
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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
Gordon Duff
I think you should be proud of the way you are coping with your life with IPF. I’m twice your age and I was diagnosed with IPF in May of this year and I have the support of my family and friends but it is hard for them to understand how this is affecting my life. My wife and I have 24 year old twins with CP and it is hard for me to help her with them so we are taking it one day at a time
Sincerely Gordon Duff
Charlene Marshall
Hi Gordon,
Thank you so much for reading my columns and reaching out via the comments. I really appreciate your kind words, and will hold onto them tightly when I am having a tough day. Some days I feel like I can cope with and manage a lot, whereas other days, my struggles are hard to accept. I completely agree that it is so difficult for our friends and family to realize the impact of this disease on us - describing breathlessness is so hard. Kudos to you for taking it one day at a time, it really is the best we can do. If you ever need an ear, or someone who truly understands what it is like to live with this cruel disease, please don't hesitate to connect. We really "get it" on this site!
Kind regards and best wishes,
Charlene
Rand O'Brien
Charlene,
This is my first post, can't quite figure out how to do it correctly. You had a question last week about Healthwell Foundation. I was dxed with IPF in 8/18. Started Esbriet. Healthwell gave me a grant to cover co-pays for the year. What a gift!! However, this year, 2019, their funding for IPF has dried up. They noted to check back later in the year, as they might have gained some IPF funding.
I had an allergic reaction to Esbriety 8mos. in. Had a rash on my hands, detoxed from it for 2 wks. then started back up and my hands swelled with a new rash to about a 1/3 their size!! Yikes, went off it and started Ofev.
Have been on it since May. No real problems. Will have the usual testing in Nov. But my O2 monitor has shown increase in the past month. Some side effects, the usual with Ofev. However,I'm a psychotherapist, I remembered the old remedy that my HIV/AIDS clients used with their major Rx's is a good dose of whole psyllium. I take a glass of "colon cleanser" with a scant 5 tbls. each morning and it works fine. Also has a lot of soluble fiber for cholesterol Not saying for everyone, but it works great.
Thank you for all you do. I retire in December and will be more active on the list. I'm in NH.
Charlene Marshall
Hi Rand,
Thanks so much for reading my columns and reaching out via the comments. You did great for your first post! :) Hopefully you get my response okay ... let me know and if not, I'll email it to you. I've only recently heard of many people's grants at Healthwell being eliminated due to their funding all being used - so unfortunate, as so many people need help in the US with that medication. So glad they could help folks when they did though! Glad to hear you're managing OFEV okay, and glad you got off the Esbriet. I've heard of many people being allergic to it! Glad the option is working for you and thanks for writing. Wishing you a happy retirement and looking forward to getting to know you a bit more throughout the forums. I love NH -such a beautiful state :)
Cheers,
charlene.
John Gay
I was diagnosed with IPF 6 months ago. I was given 1-3 years survival. My main complaint is the side effects of the medication, Prior to and subsequently since then, I suffer severe diarrhea along with weight loss and fatigue. I already have started to empty my "bucket list" ;however, I realize that family is the most important people I need to help me through these trying times. I thank God I have a wonderful loving wife who helps me cope with this debilitating disease.
I am 74 years old with plenty of stuff to do: I need to stay in shape and join a group of IPF patients for info on coping skills.
Charlene Marshall
Hi John,
Thank you so much for reading my columns and reaching out via the comments. I hope you're being relatively kind to yourself - I remember how hard the first few months were after my diagnosis, especially when given that prognosis number. The good thing is that it is just a number! Regarding the awful GI side effects from OFEV - I am also on that drug, have you tried immodium but the sublingual administration? The oral tablet didn't do anything for my symptoms but the sublingual tablet (under the tongue) did wonders for me. Worth a try maybe. So glad you have your wife by your side, and good plannig: support groups really do help when it comes to coping and staying active is also really important. Hang in there and feel free to write any time - Charlene.
Judy Krasovec
Looking forward to learning about traveling and so many of your experinces!
Charlene Marshall
Thanks so much Judy! I am looking for a way to post pictures and 'chronicle/journal alongside' them what each photo was. I was so lucky to capture some incredible pictures of marine life, like sea turtles and whales. It was incredible. I'll make sure to update you when I figure out how to do that :)
Charlene.
Angie
Charlene, Your positivity and determination to lead a less stressful life comes through loud and clear in your post, but in a very quiet stressless way. If that makes any sense. You are determined to make changes, but plan to avoid adding stress while deciding what changes to make. It's good message for all of us. Thank you.
Charlene Marshall
Thank you so much for your kind words Angie, I really appreciate them! :)
I am caught in the vortex of wanting to really live a good life with IPF, and make it known that people can live with this disease but also one that is as stress free as possible. I'm glad that message came across in my writing, it is really important to me and I appreciate hearing feedback from readers. Thank you!
Charlene.
Mary Ann Canter
I like your plan! I gave the article 5 stars.
Charlene Marshall
Thank you Mary Ann - I love hearing that my writing helps or resonates with readers, and I so appreciate hearing comments. Living a life like this, one that is quieter and less stressful is easier said than done, but ultimately so important to us I believe. I'm up for the challenge! Thanks for writing. Charlene.