Be a Good Friend to Yourself

I loved your post!! My dad had pulmonary fibrosis as well as a heart condition. Reading your column will help me to understand it better

I too loved your column, I live in the UK so am lucky enough not to have to fight for any treatment, our National Health Service has been good to me so far. I was diagnosed in March 2015 with Interstitial Lung Disease - up to then I had always had a parrot and several budgies. My consultant felt this was the cause of my ILD, sad to say I no longer have a budgie but do have 2 dogs. Having the dogs means I walk everyday for an hour - hour half, I am sure this keeps me well. Yes I get breathless at times but do love the morning walks watching the sunrise and the sounds of nature waking another day. Keep strong PF friends, I do not know you personally but share your struggle which binds us together across the pond.

I think I will enjoy your column. I look forward to sharing the journey with others going through the same thing: idiopathic pulmonary fibrosis. I do think we need to our own best friend without feeling guilty or selfish. Two things I will share that I do are (1) never hesitate to ask for help. This could be in a store where I need help reaching an item or calling my children or grandchildren. For example I have called my grandson, who lives 10 minutes away, to come help me unload the groceries from my car or carry heavy items upstairs. Many people would see this as a huge imposition on their grandson. I see it as he is big and strong and able to help. I do not call often but if I need help I ask. (2). I decided I will not feel I have to attend all events I am asked to or do activities I don't enjoy. Just today I did not go to the local high school play with my daughter. In the past I would have gone but not any more. I did not want to lug my oxygen around, I did not know any of the students and I wanted to avoid any germs. I stayed home and worked on a puzzle. When my daughter came home she said the play had not been too good. I was glad I stayed home. Asking for help and not going places when asked is fairly new to me but they make my life better for me. I am being good to myself.

Thanks so much for sharing your journey! My partner of 20 years was diagnosed with PF as a result of her radiation that cured her cancer in 2004.

This journey is difficult but together the community can help make this load lighter.

I'm looking forward to reading more about your journey Kim and what you have learnt along the way. I was diagnosed with IPF Oct 2015, during IPF week, which was a nice touch! I find that a good/quirky sense of humour is an important factor when dealing with the various aspects of the journey! On a more sobering note my father passed away from IPF a number of years ago and my sister has a possible similar diagnosis, so it is hard to avoid the obvious genetic dimension. Despite this I do manage to remain positive and I do what I can to keep current with research and clinical trials, a number of which I'm participating in at the present time. I'm also involved with an ILD Support group, which I helped to set-up at my local hospital with the help of both patients and HCP and which is a great support. There is still so much to learn and we (both patients and health professionals) need to continue to do our bit in raising awareness of these little known but devastating collection of repertory conditions. Best wishes Kim in your endeavour.

Hopefully this may help other iPF patients. When you have this condition, you begin to experience more tiredness when trying to do things such as:
Walking - I have found it to be beneficial by doing my daily walk at my local grocery store. I grab a grocery cart, put my portable oxygen machine in the basket and make my two to three trips around the whole store. I have made many friends that work at the grocery, that will talk to me and most of all be there if I have a problem. I can also find food sales.
Exercise - I go to the local YMCA every other day and get some weight training to help keep me strong. Again, you make friends with the staff and other members who will all help me if I have any problems. Do what your body will allow, anything is better then nothing.
Showers - I always wear my oxygen hose into the shower and only take it off when washing my face and hair. I also have my cell phone next to the shower in case I have any problems.
All three of the above will differently tire you out, but do it at your own pace. Never be in a hurry and do not be afraid to try anything. You will learn to live with IPF. I am starting my fifth year as an IPF patient, and was diagnosed as a advanced stage patient. Never give up, there is always tomorrow to look forward to ????

Hi Kim, I look forward to following your blog and learning how people are handling their PF. I am the youngest in a family of five children. Three of my siblings have died from IPF, and my surviving brother just recently learned that, after taking his annual breathing test, his oxygen level has slipped to the range of mid-50% from mid 60s a year ago. He is 73 and has accepted that he is on the IPF path, although not yet having to use an oxygen machine. I am the youngest, a long-time smoker (quit 2 1/2 years ago), am 67, but have not been diagnosed. Yet. Generally I'm in pretty good health, but realize how easily that can change. Learning more about how people are coping with it will certainly be helpful. Thanks to everyone for sharing.