resentment about restrictions and effort for managing BE

It can all be overwhelming and you're entitled to every emotion you feel. Big hugs. You're not alone.

@kate2025
So true! It's like going through the stages of grief.

65532, Yes it’s so true. I think we all have time when we think „why is my life like that” but we go on. This illness means a lot of time „about me” and creating my routine- eg I wake up earlier than my husband because we want to eat breakfast at a reasonable time and same about dinner. So yes I am frustrated some days more than others. I hope you create your own routine that alllows you live- you are so young.

six5532one...
Resentment is natural, but you can change a few things. Instead of washing equipment, use a sterilizer. I found that a UV baby sterilizer holds my C_PAP, nebulizer mouthpieces, and flutter valves easily. Set and forget.
Airway clearance: I use postural drainage ( directions on You tube )and listen to books on tape. Lying down is less fatiguing. The vest (check your strength, it may be too high for you)I use when at computer or the other way around. I did genealogical research for 12 years this way and looked forward to it. Find something you like to do while using your machines and procedures. For GERD, I took meds for 40 years and each one was unsuccessful until Voquezna came out this past year. It works differently and is great for me. For BE, the Brinsupri is great. It just came out August 12th and since I've been using it , I'm off antibiotics for 2 months and feel great. I know the infection will come back during the winter, but I'm so thankful for these two months of feeling well. On antibiotics I take ginger chews for nausea and they help. I know this disease saps your energy, so start with one change at a time. Good luck.
Be active in getting better treatments.

I'm also a fan of the bottle sterilizer for easing the work-love my Bololo and find I use it for other things like sterilizing the jars I keep boiled distilled water in, etc.
I agree that it's a big adjustment. Do you bring up a lot of sputum?
One other thought-there's a free Autogenic drainage app I like to guide deep breaths and huffing.

@six5532one When you ask "How do you cope with resentment about the lifestyle modifications BE imposes?" you could be talking about any of a hundred or more chronic diseases or conditions that afflict us. We have all been there!
For years I lived with chronic pain, unable to manage it with OTC meds, unwilling to use opioids, and was resentful of anyone who lived a "normal" life. Then I was diagnosed with Bronchiectasis, MAC and Pseudomonas and began my venture into all the complications you mentioned. In 2020, Covid hit and cut me off from people for fear of infection. It was all too much!
At that time, my wonderful PCP referred me to a Pain Rehabilitation Clinic, where I was taught to look at things differently. First, I read the book "The Way Out - Healing Chronic Pain" by Alan Gordon and Alon Ziv. I had a comprehensive medical assessment to make sure there were no "easy fixes". Then, through targeted PT, counseling, meditation, massage and other things I have now forgotten, I began my journey of looking at my life differently.
I learned to accept my pain and work to minimize it (no magic pill there). Next, having spent a lot of time traveling, seeing what out ancestors dealt with daily just to survive, I have coped by turning the feeling of resentment on its head and being grateful.
What? In years past, people like us, if they survived our infections, ended up living on the couch or in a dark bedroom - if they were privileged. If not, they just worked until they dropped. We, on the other hand have access and knowledge - increasing week by week - of how to manage our conditions and keep on living.

What do I recommend?
First, look at EVERY option to reduce your daily burden. If that means buying extra sets of nebulizers and Aerobikas so you can do your cleaning and sterilizing less often, do it.
Find useful distractions during airway clearance - read, learn a language do a puzzle - after a few months your BODY knows how to hold your breath & huff cough.
Don't stress about reinfecting yourself cleaning equipment - ordinary soap, water and hygiene take care of that.
Talk to your doctors the vest - if you are not infected and your BE is moderate, it may not be necessary every day - I use exercise (yoga or walking, or even vigorous yard work) to get my mucus moving.
You can socialize with your eating restrictions - maybe only on weekends, maybe for brunch, maybe by just showing up and walking around with a glass of water in hand, maybe with a group that focuses on an activity (painting, quilting, museums) rather than food and drink.

Finally, as you have said, your are going to live with this for many years - make your self-care fit your life, not the other way around. Seven years ago my ID doc told me "Bronchiectasis is a disease you are going to live with, not die from. Take reasonable precautions and go live your life." That is my mantra

@sueinmn this is great advice. Many thanks.

It is absolutely overwhelming and exhausting. If I allow myself to think Beyond today, I get very caught up in negative emotions. I have had to work very hard on acceptance. On a daily basis, I wake up and accept that this is my reality now and the best thing that I can do is to follow the protocol that has been given to me , work to physically to tolerate it as best I can and to try to practice self-love and self-care. I treated it like a 12 step program.

@six5532one I hope you benefit from the good advice offered here. Question for you: have you had an immune system workup in addition to the BE and MAC?

I Wash and rinse using dish soap and a baby bottle sterilizer will certainly speed things along. Piro Blue cup Nebulizer works faster than most. Good luck, I know it's tough being young with a family and I am empathetic with what you are dealing with. I'm an old man caring for a disabled wife but you have it tougher because you are young and still a long life ahead of you. Things will get better. I've seen so many changes in medicine in my lifetime and you'll see the same. God Bless You.