resentment about restrictions and effort for managing BE

Posted by six5532one @six5532one, Nov 2 7:40pm

How do you cope with resentment about the lifestyle modifications BE imposes? If I felt healthy, it would help mitigate my resentment. But I do all this and still feel fatigued. I am 40 years old and will have to do this for many more years.

I resent the way airway clearance, MAC treatment and acid reflux prevention have affected my life. I can't eat until I finish airway clearance, which takes a long time. I have to negotiate use of the sink to wash my nebulizer. During airway clearance it takes focus to ensure I hold each breath for 3 seconds, huff cough correctly, and don't reinfect myself when cleaning the equipment; that takes a lot of energy out of me. The vest sessions are very uncomfortable. I have to finish eating dinner at a certain time so I don't eat 3 hours before going to bed. As a result, I decline a lot of social outings and opportunities to connect with others. I could go on but you get the point.

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Profile picture for pacathy @pacathy

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.

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@pacathy I don't bring up sputum. I strain during airway clearance because nothing comes up.

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Profile picture for Sue, Volunteer Mentor @sueinmn

@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

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@sueinmn thank you for the actionable suggestions and admitting there was a time when you were resentful of anyone who lived a "normal" life. I have definitely been upset because I see people my age spending so much time on their hobbies and social life, unencumbered by the constraints of BE. It helped me to feel understood.

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Profile picture for mamiebarker @mamiebarker

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.

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@mamiebarker I occasionally discuss acceptance of this with a therapist but acceptance is a work in progress. I hope acceptance comes more easily as you continue working on it. I haven't considered how self-love and self-care might be practiced with regard to this situation.

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Profile picture for scoop @scoop

@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?

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@scoop I haven't. Starting a career pivot and fighting BE and MAC have me overwhelmed already. My pulmonologist asked me questions and ruled out rheumatoid arthritis and PCD based on lack of symptoms and ruled out CF after a blood test.

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Profile picture for picartist @picartist

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.

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@picartist thank you for the empathy and validation. I wish you and your wife the best.

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Profile picture for sarahlynn1960 @sarahlynn1960

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!🥰🥰

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@sarahlynn1960 I really appreciate your anecdote about the nebulizer attachments. It helps to connect with someone who relates to the level of frustration I feel.

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Profile picture for namd @namd

I know exactly how you feel. I like you have BE, MAC and acid reflux.
It is all so annoying. I have good days and bad. I was 55 when I was diagnosed. You are young to have all this. I have learned to cope. I have lost so much weight as there are so many things I cannot eat. I used to love socialising with friends but I avoid meals out etc. I still work 3 days a week and that keeps me sane and gives me a sense of purpose. Soldier on you are allowed to moan about it all. Treat yourself to things you can do. I am usually in bed by 8pm as I am so fatigued. Good luck on your journey.

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@namd thank you for sharing and commiserating. Avoiding meals out and dealing with fatigue are tough changes. I hope you feel better.

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