Life with pulmonary fibrosis - what we've learned

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August 2022

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Elaine, from Bolton

“Number one tip, live life to the fullest you can, enjoy all the things you once did but adapt to suit the person you are today.  I know to avoid spray lotions and perfumes and freshly cut grass.  Learn to know what triggers you, we’re all unique and what affects my breathing may not affect others.  

Enjoy your summer life, relax and bring sunshine into your day in whatever way you can.  If you can, visit the sea and gently breathe in that air, it’s a free tonic.”

John

“My best times have always been in the sunshine.  I suggest taking time, pacing yourself, and staying hydrated.  Do what makes you feel like you.  These last few days being able to sit outside and rest with warmth on me has been a gift.  I wish many more for us all.”

Maxine who cares for her husband Ron

“Did you know you can get your oxygen delivered even when visiting family or friends for one night?  Check with your hotel or Airbnb too for deliveries.  You can also get your prescription sent to where you’re going.  It really takes away all that stress.”

Jyoti Smith "young sufferer of pulmonary fibrosis diagnosed in 2015"

“The day is long and gets longer… enjoy it a little, and stay hydrated. Buy a teppenyaki (smokeless bbq).”

Ian and Dorothy regularly enjoy cruises. “When booking [a cruise], we ask for a cabin near to a lift in the middle of the ship. We head to the Medical Assistance area as I require a wheelchair and the staff guide you through the booking-in process and security. Excursions can be very tiring so we’ve found it’s better to have a rest day in between days out. Dining areas are often large, so we request a table near the doors and close to the lifts. Just remember everything is optional. Try to be flexible and enjoy the experience!”

“I’ve learned from a challenging experience on a flight earlier this year to make sure you have all your paperwork including relevant medical notes with you. You sometimes need proof. Check and double-check they have oxygen onboard.” - Sylvia, who cares for her partner Reg

*Note: We have become aware that some operators are not accepting bookings from anyone who requires supplementary oxygen or other medical equipment at the moment. We strongly recommend you check at the time of booking.

Seasonal tips

“Remember to cover up, wear a broad brimmed hat and put plenty of factor 50 [sun cream] on. Drink plenty all enjoy the weather and try to enjoy your garden, or walk with family and friends.” - Northern Trust Pulmonary Fibrosis Support Group

Sun

This article was sourced from our APF Insider magazine, packed with free information to help you live well, stories from others living with pulmonary fibrosis, research news and updates from our community. Sign up to receive your own copy.