Tagged: community, emotional support, Living With PF
- This topic has 1 reply, 1 voice, and was last updated 1 month, 3 weeks ago by Samuel Kirton.
February 1, 2023 at 10:00 am #34224Charlene MarshallKeymaster
As my disease progresses and my physical abilities lessen, I am often asked how others can support me. This is especially true in my workplace and oftentimes, I don’t know what to tell them.
Sadly, idiopathic pulmonary fibrosis (IPF) is mostly an invisible illness, with the exception of supplemental oxygen use if patients have progressed to the point of needing to use it. This means that a lot of people make assumptions about your abilities when they have no idea just how difficult it is to do basic tasks like walking up stairs or carrying heavy items. One thing that really helps me when I am with others who know about my lung disease is when they offer to carry items for me, such as taking the grocery bags from the car into my house…. this preserves a lot of my energy!
Are there ways that others support you while living with IPF that are helpful? Please share with us below!
February 2, 2023 at 2:18 pm #34309Samuel KirtonParticipant
This is a great thread topic. This is one of those topics which can take on a life of its own. This applies to both pre-transplant and post-transplant.
I have always found others in our circle to be helpful but never pushy. If it was a task I thought I was able to accomplish I just had to say I needed to push myself. In other situations, we found we only had to ask. People were generally willing to help load or unload our car. Your grocery example is spot on. Our neighbors seemed to just know when my wife returned with groceries. Delivery people (UPS/FedEx) took the extra steps to bring packages right to the front door. FedEx told us they put it in their system to alert the driver when a delivery was scheduled for our address. Meals, especially after tough clinic days or following a procedure were welcome pre-transplant. Post-transplant there were more restrictions which made that less practical.
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