Posted , 10 users are following.
Hi Folks , I'm new to the group !
I have severe bronchiectasis, was diagnosed 53 yrs ago at the age of just two yrs old.
Wondered if anyone here have been living with this most of their life too ?
If so do you feel you are always tired, I feel like I am sleeping my life away , the tiredness is unbelievable, is this normal ? x
1 like, 33 replies
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deborah00488 lizanneUK1962
Posted
Just to add another voice - yes I find fatigue the hardest symptom of Bronchiectasis to manage.
Just having to leave my third job in as many years due to ill health and wondering if I would be better off to stop trying!
lizanneUK1962 deborah00488
Posted
Oh Deborah, it's soul destroying when you have to give up your job. I tried so hard too but in the end knew it was impossible.
" Now " I get frustrated having to explain to people I hardly know why I don't work 😡.
Think we need to accept this and not give ourselves such a hard time xx
deborah00488 lizanneUK1962
Posted
Reassuring to hear others feel the same too.
lizanneUK1962 deborah00488
Posted
💞
Russell27NOLA lizanneUK1962
Posted
Lizanne an everyone else on the topic. I have to count myself very lucky so far, hearing what all of you are experiencing. I've been a "healthy" person with BRX for a long time. Being very sick in my 20's would have placed a great burden and mysrlf and my family I 'm sure, so I feel very lucky in that respect.
I think I mentioned Im 70 now and just beginning to have the kind of trouble all of you are experiencing. Mostly it's been a nuisance so far. But more fatigue is setting in and increasing hours of sleep. Sputum production is nothing like you are experiencing. I have a small ship vacation to Alaska coming up in June and just realized that I should not go becasue I may sfrieghten all the people on board with my coughing and also because I could get really sick. I dint feel this way three months ago when I booked the trip. Im aware the all of you are struglling with finances and I apologize for bringing this up, but I was less sick with my BRX early on so that I could save some money along the way. Liz, I think maybe ou should apply for assistance. Let your mom work this out for her self. Your health and good nature come first. Besides, it's the doctor's order.
Everyone else, I feel better now that I am talking with you'all, who are living this reoccuring nightmare. It's like "Groundhog Day" without most of the jokes.
Russ
Russ
lizanneUK1962 Russell27NOLA
Posted
Hi Russ, yes it's great hearing we are not alone and understand what each other's challenges are and it is very supporting.
Maybe you should have a word with your consultant about your trip . As for coughing, I know it's embarrassing but stuff the lot of them, I know it's easy for me to say as I have experienced people shuffling away from me in supermarket queues when I start coughing 😂 I like to point out I am not infectious
deborah00488 Russell27NOLA
Posted
mary08543 Russell27NOLA
Posted
IdiopathicBX lizanneUK1962
Posted
Hi LA and the others in the conversation ...
I can relate to you all. I have read comments about others on this forum who say they have BX and don't have phlegm or very little ? I am the complete opposite, it's like a tap that dosn't switch off with me the production of phlegm I also have.
Can I just saw, I could cry that I have been able to discuss this with you guys. As you said Lizanne it's not a topic people want to hear when your meeting for a coffee with them so thank you all so much.
Oh Crimson crow, about your mum, I have the same sort of problem with my daughter. I have a gorgeous granddaughter who I love with all my heart and my daughter has fallen out with me when unfortunately I have been too ill to babysit. She has grown up seeing what I am like and that her dad/ my ex husband left because he couldn't cope with me being ill so much , it's so hurtful.
Obviously it's the severity of the BX which has caused the fatigue with us.
People who manage to work must have mild BX
Sending my love to you all 💖
Operalyn IdiopathicBX
Posted
My heart goes out to those of you who don't have understanding families. I married my dear husband in 1974 - I was 26 and he was 22. He already knew about my bronchiectasis and my horrible old geezer's cough. He had to learn more as years have gone by - physiotherapy and huffing and horrible sputum (always referred to as gubbins in this house) and times I can't do stuff...mind you if at all possible my motto is do it and suffer afterwards. He never complains - if my chest is rattly he reminds me to go and do my physio... known as hacking and barking...and stop putting up with it. He's a good bloke and I am obviously very fortunate.
lizanneUK1962 IdiopathicBX
Posted
I feel your pain id/BX , bet there's nothing you want to do more in the world that spend time with your little granddaughter. It's a pain in the butt having this, it not only effects you but also your family's life. Hope you keep a bit better soon and you get to spend lots more time with your little granddaughter as she will be a tonic X
alouette Operalyn
Posted
Oh, Operalyn, that's very nice to hear. I also have an extremely understanding and supporting boyfriend. But I'm still on the fence about having children. I know I'm healthy enough to be pregnant, but I'm wondering if rasing them will destroy me, and I also don't want them to have a chronically tired mom who can't physically be there for them. Do you have children? Mind you, I also have Pseudomonas.
lizanneUK1962 Operalyn
Posted
Aw Operalyn, your husband sounds like a diamond, I am so happy for you to have such an understanding husband. I dated my husband for 6 yrs before we got married so he too knew about my illness. He was/is a social butterfly and wanted me to dress up and go out with him at the weekends but I didn't have the energy. He continued to go out on his own and met someone else. I was just unlucky in my choice of man .
He obviously loves you very much Operalyn xx
lizanneUK1962 alouette
Posted
I have one 29yr old daughter Alouette, had her when I was 26. I had a great pregnancy and delivered .I'm not going to lie it was tough but I was very fortunate to have a fabulous mum and dad who helped me so much. Don't know what I would have done without them. Was the best feeling in the world having my daughter.
My ( then husband) was jealous of the time my parents spent with us while he was at work and thought I should have being doing more myself . That's why he's my ex 😉
Sunmoonstars lizanneUK1962
Posted
Fatigue is common, my consultant said positive mental attitude the best approach and this is what I've tried to have. Sleep when you need to. Early nights if doing a lot. I work part time now, 4 day week and Friday's are a recovery day. The thing I've found helps most with sleep are pillows that allow me to basically sleep half sitting. Two really big pillows and then a v pillow on top. Gives lots of support. Best thing I ever tried may look odd but I get a good sleep and take my v pillow wherever I go if I can!