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]
The past two weeks have been hell. Bear with me. On Thursday, our new rescue cat needed to go to the vet. I am now using ambulatory oxygen and the kerfuffle of getting it ready for the short period I would need it while transporting Casper seemed too much bother. On Friday, I had a tooth extracted because my dentist didn’t want to put me through…[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!
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]
I’m very frustrated again (seems to be my usual state lately) for two reasons. First, my cleaner turned up with a cold and I sent her home. No matter how frequently I tell people to 1) stay away from me when they’re ill and 2) stay away from me when they’re wearing perfume – nothing seems to make them remember.…[Read more]
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 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]
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