resentment about restrictions and effort for managing BE
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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@pacathy I don't bring up sputum. I strain during airway clearance because nothing comes up.
@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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1 Reaction@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.
@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.
@picartist thank you for the empathy and validation. I wish you and your wife the best.
@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.
@namd thank you for sharing and commiserating. Avoiding meals out and dealing with fatigue are tough changes. I hope you feel better.