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    • #15036

      In February of this year, I wrote a column on Pulmonary Fibrosis News about the gift of quiet weekends. While I still love spending weekends in the comfort of my own home; catching up on outstanding tasks, spending time with my dog, relaxing in bed or just “puttering” around the house, it isn’t realistic to do that every weekend.

      Since my diagnosis of idiopathic pulmonary fibrosis (IPF) two years ago, I’ve been working on finding the balance of rest and productivity on weekends in order to feel organized and ready for the upcoming week. I have always been one to struggle with sleep on Sunday evenings, as I find my brain is constantly “on” and thinking about all the things I have to do in the week ahead. However, I’ve found one of the things that helps settle my mind on Sunday evenings is feeling organized. I like to have something made for lunches so I can just quickly assemble my meals and snacks for work in the mornings. It makes things easy and less hectic during the work week, and I also like to have a relatively tidy/organized house. Sometimes achieving these things can take all day Sunday, if not all weekend and they are physically taxing on me.

      That said, I also really need the weekends to rest my body as working full-time with a chronic lung disease is extremely exhausting. As of late, I am not even making it through the work week due to fatigue and I am really needing the weekends to regenerate. I also know that Saturday and Sundays are typically the time that works to catch up with friends, family members or run errands that I didn’t get a chance to do during the week. So, I’m left trying to figure out: where is the balance between rest and productivity on weekends?

      As a patient living with IPF, what do you primarily spend your weekends doing?

      Have you found a good balance between rest and productivity?  If so, do you have any good tips to share?

      The common phrase: “there aren’t enough hours in a day” seems to apply to me lately, except change it to hours in a weekend. I need the rest, but I also need to get things done so I’ve yet to find that good balance. I’d love to hear any tips or tricks you’ve discovered that might be helpful!

    • #15203
      Faye Moore
      Participant

      Although I do not have any tips, I would just like to respond… This is So True! I was diagnosed with pulmonary fibrosis 3 years ago. Was very fatigued but not on oxygen yet, tried to get disability but was denied because they said I could find an easier job☹️😡. I am currently still working full time, but often call in sick probably once every other week, the weekends I Must get rest just to try an make it a full week at work! PF Sucks! I am only 47 years old, I used to be so active in my kids/family life! Now it is frowned upon when I sleep my weekends away😪. Thanks for posting, I feel so alone with this disease, it’s so hard for others to understand because I look so healthy!

    • #15218

      Hi Faye,

      Thank you so much for writing and contributing to this topic thread. I always appreciate hearing from others about this, as so many people just don’t understand… I always know that topics like this will be understood by people on this forum. That said, I sure wish it wasn’t this cruel disease that brings us all together.

      What a terrible and heartbreaking response you received about going on disability… “you can find an easier job”… that is awful. I’m really sorry that was your experience! I am also still working full-time and I feel like I call in sick excessively as well. Thankfully my place of work is really reassuring and supportive but the added stress/anxiety/worry of losing my job due to not being able to work can be so hard to manage. Hang in there, I truly understand the unfairness and frustration of this disease. You aren’t alone and we’re all here for you!

      Warmest regards,
      Charlene.

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