resentment about restrictions and effort for managing BE

@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

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.

Sue, you really ARE a role model, but you have definitely earned it!!!
I wanted to add to everyone else’s’ great comments that I’ve had a few nights that I acted like a baby and threw my neb attachments across the room saying, “dammit, I’m just not doin it”. (By the way, those were the cheap neb disposable attachments - not my expensive new e-flow stuff 😳)
However I still will have “dammit” nites occasionally, when I’m “just not gonna do it”. By the next day though I’ve got my big girl pants back on and I’m peacefully back on track. It helps to remind me that in the end, it’s still my l choice whether i do all this stuff. So if it helps you, take a break now and then.
It also helpful that I adopted doing the different things slowly instead of changing my whole life all at once. Mostly that was because I only learned the different facts slowly from different sources, but if you are overwhelmed you could back off a little here and there, and ease into some things. We all hear you though!🥰🥰

@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 LOVE YOUR SUGGESTIONS!!! ❤️ I hope you had a fabulous vacation. You are a role model to us all,
Linda Esposito

@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

@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