Enjoying What I’m Able to Do as My PF Worsens
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As my PF worsens, the list of things I’m able to do and places I’m able to go grows smaller. I’m sure as a patient and a caregiver, you know exactly what I mean.
Grieving as my PF worsens
I grieve for all I’m not able to do and the events I’m not able to attend. Two months ago I missed our niece’s wedding two states away, and I probably won’t be able to attend my best friend’s son’s wedding in a few weeks. Some friends recently invited my husband and I to come over for dinner, but I didn’t feel like I could handle being away from home that long.
As my PF worsens I get fatigued easily, especially when away from my “perfect” environment at home. This includes my recliner, liquid oxygen, and not having to walk very far to get where I want to go. I’ve also found that it is hard for me to really pay attention in social conversations for over an hour. This is a huge change for me, when as a therapist for 30 years, I could see eight clients in a row with no problem.
Enjoying what’s still possible
Even with all these losses, I embrace and enjoy all the things that I still can do. I don’t take anything for granted. Yesterday, I went to the grocery store and did my shopping. I enjoyed walking slowly, looking at everything, and bought what I needed. I’d been wanting to go for several days, but didn’t feel up to it until yesterday.
Picture by Kim Fredrickson
A few days ago, I planted a few plants in our front flower bed. It is a raised bed, so I could stand while doing it. I had about ten plants I wanted to plant, but knew that would tire me out. I planted five that day, and five the next day. I really enjoyed filling in the bare spots with some beautiful color, and working with the dirt.
Tomorrow, my hubby and I are going to the movies. We have a theater near us where you can watch a movie and also order lunch or dinner. Being able to have a meal makes it extra fun, but the real benefit for me is that there is a lot of extra room around the seats. This leaves plenty of room for my portable oxygen units. We have to bring in three units so I have enough oxygen to spare. I push one on a cart, and my husband carries two of them. This is a fun thing that I’m able to enjoy – and I’m going to enjoy every minute!
How about you?
What kind of things are you still able to do that you enjoy? Do you have any new hobbies that you like? I’d love to hear the ways you embrace and enjoy what you are still able to do.
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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
Bob Wells
Kim
My new normal came with big changes including an increase for resting to 4 liters and 10 liters plus for activity. Like you I tire much more frequently.
I find that going out for meals or having friends over for meals mid day works best.
If our home concentrator only operated by remote it would dramatically change our lives.
Thanks for all your writing. It is much appreciated.
Bob
Kim Fredrickson
Hi Bob, thanks so much for your encouragement and for sharing your experiences. I sure wish I could operate my concentrator remotely too!
Ray Hastings
i have PF and starting on my 6th year. my wife and i enjoy going on cruise ships. My condition is worsening so it is more difficult but i have found some things that help.
1. i have an o2 concentrator that allows us to travel without the hasse of o2 tanks.
2 at most of the the cruise terminals you can rent scoters for use on the cruise ships. they are not super expensive and allow you to move around the shop without getting winded.
good luck and i hope you start to improve
Kim Fredrickson
Hi Ray...I'm so glad you are still able to travel and go on cruises. What a wonderful idea to rent a scooter! Happy cruising!
JUDY KRASOVEC
I do get tired ! STILL I DO grocery shopping I found a small Wal-Mart that only us grocery and the aisles are cut into so you don't have to go up and down each long aisle.that helps . I was able to go to the rodeo and truly enjoyed it¡ I can't do the pro bull riders anymore the smoke stays in the arena. SAD Still can work in my yard just not as long. Go to the movies when there is anything worth seeing. Out to lunches,still look forward to that. I've had a couple of life long FRIEND just drop me after I got sick, that has and is difficult to understand but your column helped with that. Puzzles and books when it cold and can't get out. Now that flu season is upon us ,WORRY¡!
Kim Fredrickson
Hi Judy, So glad you have a variety of things you can still do that you enjoy. So sorry about the lifelong friends dropping you. That is so very hard. I know what you mean about flu season. I'm worried too.
Rhonda Galyardt
What keeps me happy and is still being able to play golf. I have a portable oxygen concentrator I bring with me. I get short of breath after my tee shot, and if I have to walk up to much of an incline (exertion) but manage to recover, or use my O2. Enjoying the afternoon with girlfriends visiting after golf is also fulfilling. Another pleasure is my loving pets, they put a smile on my face daily. It's a must to continue our simple pleasures to help us all stay positive and as strong as possible. ?
Sam
Hello,
My father has pulmonary fibrosis and he lives alone. He has had the disease for about a year and it is idiopathic. I am stationed overseas with my husband and I'm not sure how to handle his condition from afar. I don't know when is a good time to go home, how long should I stay home with him, when to get him a caregiver, or any of the issues and challenges he will face as this disease progresses. He is in his 70s so no chance for transplant. He still drives himself around but it's getting harder. His diet is poor. I'm just at a loss as to what to do when I am so far away, we are stationed in china and he is in Virginia. Any advise would be greatly appreciated. Thank you so much.
Wendy Corley
Sam, I am almost 68 and 8 weeks post transplant. Several people in my support group have had transplants in their mid 70's and are doing great. The age thing is old school if you are reasonably healthy otherwise. Mayo Clinic Jacksonville is awesome for organ transplants. Hope it will work for your Dad.
Kim Fredrickson
Hello, So very sorry for how difficult it is to be so very far away from your Dad. You pose such good questions. Here's a couple of ideas to consider: Make a phone appointment with his doctor and share your concerns. See if he/she can connect you with a social worker who could be an intermediary. Ask one of his neighbors or friends to look in on him every few weeks and bring him a meal. Arrange for food to be delivered via local grocery store. These are just a few ideas. I hope it helps a little. You are in a very difficult situation, too.
Sam
Thank you both for your reply! I will talk to my father about the transplant. He is 73 so not sure what they will say. Yes I've heard the Mayo Clinic is excellent.
Wendy How do you feel post transplant? Is the condition markedly improved? The doctors at Johns Hopkins in DC are talking about putting him on an experimental drug but the cost is extremely high.
How does one find a support group? I want him to join one. I wish I was home to be arranging all this.