Hello Ling, Please don't let this condition we share discourage you from living a full life.
Over the nearly years since my diagnosis, life has changed, but we still travel, eat out, go to concerts and plays...just more carefully.
The occasional short shower in a hotel/motel is not a problem - I request an accessible room, which usually has a hand-held shower wand so I can keep the water away from my face.
I continue to swim - in an outdoor pool or the Gulf/ocean.
We choose airy restaurants with the tables well spaced and eat outside of peak hours.
I often choose to wear a mask indoors, and I notice this autumn that many others are as well - even in our church, at the market, at a school performance recently.
I am super cautious about staying away from people who may be ill (my extended family has many with health issues, so this has long been our practice to keep each other safe.) We are still deciding about whether we will join our community Thanksgiving dinner, or whether that is too many people for our comfort.
Just remember that you need to figure out your personal risk tolerance. My philosophy is to do everything I can to keep my lungs clear, control my asthma, limit excessive exposure to MAC in soil/dust (eg masking & washing off, having others handle digging and mulching) and in concentrated water vapor (eg hot tubs). I refuse to worry about "incidental exposure" - occasional showers, drinking water. I was sick for 3 years before diagnosis, then treated for Pseudomonas and MAC for almost 2 years; now I have been exacerbation-free for 35 months without antibiotics doing these things.
I think we are all frightened and super-cautious when first diagnosed, then we find a routine that works and settle into it.
Sue
Hi Sue,
You are truly inspirational. Yes, we have to live, and life is short (not a cliche). It seems to me that we may not be able to eliminate Mycobacterium bacteria in our daily life no matter what we do. Maybe the best thing we could do is to keep the airway as clean as possible. I am wondering if this bacteria is cleared by itself for a normal and healthy person. Does that mean if we keep our airway clean, the bacteria will behave the same to us? That is a question I would love to find out. To ask for an accessible room with a hand-held shower head is a great idea. I am thinking of changing one of our showers to hand-held. I believe dining outdoors is no problem, concerts and plays are also ok, because we can wear masks. You mentioned that pandemic normalizes mask wearing. That is true and it is to our advantage. I used to get away from people who wear masks. Now I appreciate people wearing masks. I have two grandkids, one is 9 and one is 6. I am very open to them, if they are sick, I just can't afford to be around. I still need some time to sink all in, be careful and not paranoid.
Many thanks for your experience sharing!
Ling