Guest guest Posted November 13, 2009 Report Share Posted November 13, 2009 A book is going to take awhile and is a great idea. In the meanwhile, I wonder if we could put together a pamphlet to hand to friends and family telling them a little about the basics of ILD and how they might accommodate those of us so afflicted. Most people are curios anyway. For instance, today my husband decided that I won't be going along with friends to an estate sale tomorrow. He sited the chance of rain, cold temperature adding that he wasn't driving so we could not leave when I wanted to. He could be right but, he had already informed said friends that I wouldn't be going. We are restricted enough by ILD. It is hard not to resent others adding their own restrictions based on little or no knowledge. They also, without thinking, expect too much sometimes. I had been kicking around the pros and cons with no decision yet made. My " independent as a hog on ice " streak was ready to spring into action, hairs rising on the back of my neck! Then it occurred to me that he had my best interest at heart. Friends do the same offering to call another time because I cough, opining that maybe preparing a simple meal for them is too stressful for me. What they don't get is that only one person can weigh quality of life against his/her best interests. Deciding what activities to expend energy or risk on, would be at the sole discretion of the one who has this confusing disease. I feel like a complete invalid when they set me aside into a special category. That will come soon enough. On the other hand, I'd appreciate consideration without the need to constantly explain. In other words, we might direct those good intentions! For instance, exertion is not good, we don't want to park in the farthest section of the lot and walk, cannot keep up with a fast walking person; and you know the rest. Please add them to the list. For myself, I can't go near grass, mold etc... a place for a special items could be left blank. Would this be rude or informative. Would it work for anyone you find yourself doing things with? I'm thinking of even making a simple one on the computer for my own use. Maybe just a little card would do like a business card. Input please, and elaborate as needed. ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2009 Report Share Posted November 13, 2009 ann, It's not precisely what you describe but there is a Patient Handbook on the Foundation's website. If you call they will send you a bound copy or you can download the pdf file and print your own copy this evening. http://www.pulmonaryfibrosis.org/patient.pdf It is kept updated by the Foundation and is a great resource. Hope that helps! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Fri, November 13, 2009 5:08:42 PMSubject: Pamphlet A book is going to take awhile and is a great idea. In the meanwhile, I wonder if we could put together a pamphlet to hand to friends and family telling them a little about the basics of ILD and how they might accommodate those of us so afflicted. Most people are curios anyway.For instance, today my husband decided that I won't be going along with friends to an estate sale tomorrow. He sited the chance of rain, cold temperature adding that he wasn't driving so we could not leave when I wanted to. He could be right but, he had already informed said friends that I wouldn't be going. We are restricted enough by ILD. It is hard not to resent others adding their own restrictions based on little or no knowledge. They also, without thinking, expect too much sometimes.I had been kicking around the pros and cons with no decision yet made. My "independent as a hog on ice" streak was ready to spring into action, hairs rising on the back of my neck! Then it occurred to me that he had my best interest at heart. Friends do the same offering to call another time because I cough, opining that maybe preparing a simple meal for them is too stressful for me. What they don't get is that only one person can weigh quality of life against his/her best interests. Deciding what activities to expend energy or risk on, would be at the sole discretion of the one who has this confusing disease. I feel like a complete invalid when they set me aside into a special category. That will come soon enough. On the other hand, I'd appreciate consideration without the need to constantly explain. In other words, we might direct those good intentions!For instance, exertion is not good, we don't want to park in the farthest section of the lot and walk, cannot keep up with a fast walking person; and you know the rest. Please add them to the list. For myself, I can't go near grass, mold etc... a place for a special items could be left blank.Would this be rude or informative. Would it work for anyone you find yourself doing things with? I'm thinking of even making a simple one on the computer for my own use. Maybe just a little card would do like a business card. Input please, and elaborate as needed. ann Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.