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Sometimes it can be hard to love your life or your body when you feel trapped as a result of your chronic illness. Since being diagnosed with idiopathic pulmonary fibrosis (IPF) in 2016, I’ve really enjoyed reading articles or columns from other young adults living with a chronic illness. The topics always vary, but typically speaking, they always spark my interest because I find them relatable. TheMighty is an amazing website that showcases various stories about chronic illness.
I recently read a column on “the good days” of living with a chronic illness, and realized that I often neglect to remember or acknowledge those days. Many of my days are consumed with frustration of not being able to breathe or feeling tired, that I typically remember those bad days more often than the ones that I’d consider good days. Is that because I don’t acknowledge them as “good days” and consider them to be normal (or what should be the norm)? Something I need to consider next time I have a really good day.
I believe it is important to acknowledge the good days, even when they might be few and far between. I also realize what characterizes a “good day” might be different for each person, and I am curious to know: what would you consider a good day while living with IPF?
What would you be able to achieve/accomplish or physically be able to do in order for you to reflect and say “today was a good day”?
I’d love to hear your thoughts!
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I consider it a good day when I go for more than an hour without thinking about this disease. Usually there are physical and mental reminders that make forgetting about it impossible. On a good day my chest doesn’t feel tight or heavy, breathing isn’t a struggle, and I have some energy. I get errands done, finish some work, go to pulmonary rehab, and have dinner with friends. I’ve had some rough days this summer with the humid weather, so I really have appreciated the good days when the air is cleaner and lighter.
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So far, all my days are good days since I am only about 1 year since diagnosis. I suppose there will be some, if not many, ‘not so good days’ in the future. If I remember that every day is a gift, and stay truly grateful for all the people that God has put into my life… family, friends, coworkers, and unbeieveably talented doctors… it’s hard right now to imagine a ‘bad day.’
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Hi everyone, I too have many good days but seem to think more of the bad days, I have not had may bad days because I am just starting to feel the effects slightly. Bad days for me will be when I have to use oxygen continuously. I have so many great friends that encourage me to be strong, but many evenings when I’m alone I let my mind think of what the end stages will be like for me. I am thankful to God for every day I am still here. So very thankful, only he knows my fate. I am making every breath count. Thankful for this forum and my support group.
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I was diagnosed with NSIP and Bronchiectasis a year ago. I was told then that I was in the moderate stage of my illness. I use oxygen on exertion, 3-4L. A good day for me is when I have the energy to do things at home or run errands. A good day is when I run errands and I don’t think about the weight of my portable oxygen on my shoulder. A good day for me is when I can meet my friends for lunch or dinner. I try to dwell on the good days and not the bad. However, when I think about the bad I give myself permission to do so and I put a time limit on how long I’m going to allow myself to stay in a bad place. I’ve seen both of my parents pass, one with COPD and the other with Alzheimer’s. At the end of their life’s, they were given morphine to keep them comfortable as their bodies slowly shut down. This is how I imagine my end days are going to be and I’m ok with that. They died a quiet death and maintained their dignity! There was no suffocation, no duress as they lay accompanied by their loved ones. Just a sound sleep as they went to be with God.
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My dad died from emphysema. He was at 25% lung capacity when he started failing fast. He was put on morphine at the end and he did not wake the last two days. I pray for that kind of ending for me. I was diagnosed after endless testing last July. In June they considered a PF diagnosis. In July I was put on oxygen for activities. I’m now on it 24/7. My physical therapist thinks it could be upped to 4.
Today was a bad day at therapy. I struggled to get my minute’s in. I knew it when I got up today. At night I woke a few times gasping for air. Last Thursday was a good day. I did my exercises with no problem. The therapist said she didn’t expect me to do that well. It’s frustrating not knowing from day to day how I’m going to feel. I’ve canceled plans because I know how hard it will be to go. I hope during the summer I have a lot of good days. I’m anxious to get out in my flower garden. Everyone take care. I pray for all of us.
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A good day would be if my DR. would return my phone calls, If I could accomplish something without having to sit down for a while every few minutes. If I could maintain the feelings I have first thing in the morning before I am forced to get up to pee. While I am laying there I feel absolutely normal, no pain, no breathlessness, no lack of energy, but, as soon as I get up it can be rough for a little while, then it all depends on what I am trying to do. Mostly I have pretty good days as far as how I feel.
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