Wendy Dirks

I just saw this topic, sorry for my slow response. My husband gets horrible muscle cramps in his legs and feet and I get them in my chest too after bad coughing bouts. He drinks tonic water – loads of it – as the quinine is supposed to help reduce cramping. Maybe worth a try?

Thank you so much, Charlene – I know you have been going through a very difficult time from reading your posts on the news page. I am so sorry. That illness of yours has been a real setback. Know that I’m thinking of you too and hoping that you recover a bit. In 2018 I was sick for months with inflammation throughout my body, not just my lungs and…[Read more]

Wow, that was really informative, thank you so much, Jill! Now of course, I want genetic testing to see whether I have the variant that means I have a better prognosis. But that’s probably asking too much – what if I don’t?

Thank you, Jill. I didn’t know there had been alleles identified as risk factors. When my dad died in 1989, his doctor told us to be extremely vigilant about our lung function because the genetics of the disease were unknown. I was surprised when I was diagnosed with hypersensitivity pneumonitis and asked my consultant how a father and daughter…[Read more]

Thank you, Mark. Yesterday I thought that I had come to a place of acceptance. I thought that facing my own mortality as one does with this illness, I was able to accept my son’s death. But today I don’t even want to get dressed. I need to shower – we all know what an effort that requires. It’s really difficult to work up the energy. I have to…[Read more]

Thanks for this, Noah and Charlene! I have read this chapter and it has lots of common sense tips for good nutrition. I do have a couple of questions that have arisen this week while my health care team try to get my new ambulatory oxygen at the right flow with the lightest possible cylinder. Back for more walk tests on Monday!

The nurse told me…[Read more]

Thanks for sharing, Jane. I’m not taking Ofev so I’m not suffering any side effects but small meals are definitely part of my life now!

That’s an interesting thought, Karen, thanks!

Richard, it sounds to me like you have found the perfect solution for you! I also used to be the one who always went “home” for Christmas as everyone else in the family lived close to each other and I lived hundreds of miles away. I get it!

Thanks, Fred – that makes sense. I don’t usually eat large meals any more anyway – I can’t. I follow what’s called “intuitive eating,” which is a way of reconnecting with our bodies and eating when hungry and stopping when full. I get full quite easily nowadays, and I’ve noticed I eat a lot less than I used to. Making sure I’m eating healthy meals…[Read more]

Oh, Susan – I really feel for you! I think I’m okay as after the cleaner left my husband went around and wiped everything down, door handles, etc. People don’t mean to be thoughtless – but they are!!!

Thank you, Nan! I think scaling back will be the way forward. Having grandchildren is such a blessing – ours are 16 and 10 and I do enjoy their happiness at Christmas.

Thank you, Karen! I think your point about expectations makes a lot of sense. And Samantha, I agree that you don’t need to be superwoman – you already are. One of the happiest Christmas celebrations I’ve had since my illness was simply being home with my husband who is my caregiver. We slept in, puttered about, ate a late dinner and it was…[Read more]

Taleena, thank you so much for sharing your thoughts. My dad died of IPF in 1989 so I understand the importance of making memories for people. I was my mother’s caregiver in her final illness in 2005 from cancer and I remember her last Christmas vividly. She insisted on getting her hair done. She lived in Chicago and it was bitterly cold. We…[Read more]

Thank you, Burma! Those are excellent suggestions. I’m sorry you ended up in hospital but it sounds as if you were able to have a lovely time anyway.

Thank you for responding, Charlene – I’m so sorry you have been so ill. I think you’re right about not making any decisions at the moment. I’m feeling a bit cheerier today anyway. The one thing we did do that was a wonderful Christmas treat was adopt a 13 year old cat from a shelter. Casper is just the sweetest thing ever. The second of my two…[Read more]

Thanks for responding, Susan! Your solution sounds very sensible. At least it’s over for this year! And the world won’t end if I don’t get the tree put away for a few weeks.