I still do many activities with our friends as couples & with just the ladies. I just do everything a little more slowly. We still go into NYC for shows & still travel. My limitations are stairs & hills. I always check & make sure our hotels have elevators .
On a recent trip to the city we went by ferry & had to park. I pulled out my handicap sign & one of husbands laughed & said how did you get that? He had no idea & I just said don’t worry it’s legitimate 😊I no longer explain myself or my situation.

I deal with it inking I'm grateful to be alive after Catching Covid my severe side effects lasted nine whole months it was terrible . I'm living with PAH fibrosis and ILD there is always no someone else that that has it worse than my self then my heart goes out to them .

I am so grateful for these comments. You have no idea how much they help me feel better, about myself. It is a struggle to get dressed and go places. So I choose to stay home. Not to mention having to take the oxygen tank with me.
Thanks for all the good, positive thoughts.

I know that my inability to hike to our mountain cabin and to go on backpacking trips with my husband is a big part of the destruction of our relationship. The physical activity and getting out in nature is what we had in common. It's what attracted us to each other. He now goes on backpacking trips with his girlfriends and goes to our mountain cabin with them. The other thing that has caused us to grow apart is that I stopped drinking 27 years ago, after we had been married for6 years. I started going to therapy and standing up for myself. I didn't do everything he told me to do. I developed self esteem. He told me during a recent conversation that our marriage started going downhill after 6 years. I reminded him that was when I stopped drinking and also, I got lyme disease and was disabled by it for several years. Then, I got it a second time and it knocked me down again. When one starts using drugs and/or drinking, one stops maturing emotionally. Using that, I'm married to a 14 year old boy. You know, he acts like it. That explains a lot.

Hi Joan, I too have PAH and while it is not as debilitating as others have it, I don’t know how I am going to feel on any given day. I am not on oxygen, but the overwhelming fatigue, shortness of breath and chest discomfort keeps me at home more than I want to. When I make plans to go out with friends for lunch, I try and pace myself in the am. But once I get dressed and put makeup on I look forward to going out and do enjoy myself. I do what I can and I have explained to my friends why I can’t do what I use to. Are there things you can do with your friends and be more of an observer than a participant? Can you invite friends over and bring food in for a luncheon? Or a game day. Do you call them to stay in touch? I know just getting dressed is an effort and then getting yourself wherever you have to be is exhausting. Maybe join a senior center, reading club. Some have on line activities. It is difficult and a darn shame when our friends disregard our health concerns. Good luck and keep us posted.