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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CrimsonCrow lizanneUK1962
Posted
Hi!
I was diagnosed 12 years ago, at 28, though I've spent most of my life with lung issues and I don't know exactly how long the bronchiectasis was there before it was found.
I'm constantly tired. Getting through a full day of doing things is pretty much impossible unless there's a (long) nap involved. And from what I've seen on this forum, if fatigue isn't "normal," it's at least pretty common.
lizanneUK1962 CrimsonCrow
Posted
Oh are you the same CrimsonCrow ? I need sleep everyday too.
I think some of "friends" think im lazy .
You probably never get a full uninterrupted nights sleep for coughing too which is exhausting.
Thank you for making me feel "normal" ?
CrimsonCrow lizanneUK1962
Posted
I think I've forgotten what a good night's sleep IS. It's almost 1:40AM for me here in the US, and I probably won't get to sleep for two or three more hours because of the coughing and wheezing. I have no idea why it's worse at night.
The hard part's getting up every morning knowing I have a list of things to do, and knowing that at best, I'll make it through one or two of those things and just run out of energy for the day.
In my case it's my family that think I'm "lazy". I'm in my fourth year of trying to get disability benefits (my pulmonologist insisted I try, because obviously this isn't going to get better, and I've lost my last three jobs to this stuff--not exactly conducive to work when you're constantly exhausted and coughing up blood!), and my mother, of all people, who's watched this whole thing play out for 40 years, likes nothing better than to tell me how "ashamed" she is (because no one in HER family ever asked for a "government handout"!). Because, you know, everything would be fine if I'd just get off my [redacted] and get a job.
Sorry, didn't mean to rant at you! It's just...very frustrating at times.
lizanneUK1962 CrimsonCrow
Posted
Oh my goodness, your mum ? She obviously see's what you go through on a daily/nightly basis. I'm the same, sleep a few hours then up coughing and trying to clear my lungs every night resulting in fatigue
You rant away CC, think you needed to get that "off your chest" too.
Some empathy would go a long way.
Please don't listen to those negative comments , you deserve TLC and understanding. I was like you, lost the job I loved through this dreadful debilitating illness. Living with the illness is frustrating never mind trying to explain your self to others because you look ok on the outside.
I'm sending you a huge hug my friend xxx
Russell27NOLA lizanneUK1962
Posted
Liz UK, I was diagnosed with BRX about 10 years ago. I am 70 now but have had a life time of respiratory illness: Dozens of Bronchitises and about 10-15 Pneumonias so my experience is not the same.
I have really only felt "ILL" in the last 5 years, but am now experiencing more respiratory exacerbations and fatigue. Its getting easy to sleep 10 hours when 8 was always my norm.
I dont tend to have daytime fatigue like yourself and others on this site, but I think it might be a next step.
Sorry you are having such fatigue. Waht does your doctor say about?
What about weight loss?
Russ
lizanneUK1962 Russell27NOLA
Posted
Hi Russell
I was told many years ago my lungs would deteriorate and 52yrs on they most certainly have. I find from November until March I am really poorly, obviously the cold damp weather in the UK . I live on my own ( ex husband couldn't deal with illness ) wasn't a good companion being ill and sleeping so much which i completely understand 😴 !
I feel the little energy I have is spent trying to keep on top of this illness, physio, nebuliser, nasal irrigation, meds and off course appointments ha.
I find the amount of phlegm my lungs produce is never ending, Not long after long physio sessions the phlegm starts to gather in my lungs again very quickly, it is a vicious cycle.
My specialist says the lethargy is normal but I have been reading some comments on here that some BX patients are working ?! That would be impossible for me and i take my hat of to them.
Roll on the better weather for all us bronchiectasis sufferers to get out in the lovely fresh air to improve our quality of life ??💪 xx
lizanneUK1962 Russell27NOLA
Posted
Oh Russell
Unfortunately no weight loss for me.
I also have asthma and on steroids so I'm blaming this for my appetite ha.
Hope you are coping as well as expected through these winter months xx
CrimsonCrow lizanneUK1962
Posted
lizanneUK1962 CrimsonCrow
Posted
YES - It is never ending !!!!
Wish we even got a few days respite from it 🤢😷🤧😟
Operalyn lizanneUK1962
Posted
Hi! Yes I've had bronchiectasis for at least 69 years - I have had it since I was a year old (measles was the cause - please get your children vaccinated!).
I had a difficult school life - missing months at a time. I worked in offices from the age of 16 to 66. I did work part-time in my 50s and 60s.
I am also stupid. I am very tired often - especially in the afternoon. I don't expect to be...in spite of the fact I have tons of sputum most days and have to do 40 minutes of physio every day. You would think I would be used to it. Fortunately I am retired at the age of 70 and can rest which helps.
Mental attitude helps me - although I have my desperate days - I have had it so long I know no other way so I just ignore it in spite of the physio, the antibiotics, the nasal washes, the puffers and all. I act as if I haven't got it. This can cause it's own problems but if I had considered myself different I would have had a miserable life. However I have been very very tired this week and I shall allow myself a rest every afternoon without arguing with myself that I should be doing something!
lizanneUK1962 Operalyn
Posted
I had a difficult time at school too Operalyn. I was ALWAYS embarrassed the kids knew I had to cough up disgusting phlegm, you don't want to be different when your young. At the age of 55 I am just beginning to open up about it, who wants to tell people most of your day is spent coughing up purulent phlegm hah, not a very nice topic 😷.
Yeah I agree mental attitude does help it gets so tough sometimes though dosn't it ? knowing there is no cure and we never get a break for coughing up large amounts of disgusting phlegm each day. When you say you won't argue with yourself, I agree, it's all about accepting this is my life, I can't do what my friends do but on good days I may be able to do something nice.
Yip- we should not feel guilty if we sleep, that is our bodies telling us we need to rest xx 🌹
alouette lizanneUK1962
Posted
Wow, I'm so sorry to hear about everyone's problem, but it's also comforting to see that we're all in the same boat. I have recently fallen out with a friend who accused me of being selfish because I never go visit her at her home which is at the completely other end of town. And she knows about my issues and how often I get tired. Needless to say, I don't need friends like that. I know this is hard, especially when people close to you don't understand (like Crimson Crow's mom!). Btw I'm 31, female and have the lovely combo of BX + PA.
I avoid fatigue by taking supplements and avoid gluten - I seem to have an intolerance because it makes me puffy and tired, as if some sort of an allergy. I don't work either, I freelance from home, which helps my lungs enormously, but is also responsible for my weight gain and a poor social life.
lizanneUK1962 alouette
Posted
Aw..you too Alouette ? It is comforting knowing we are not alone . I've only one genuine friend who understands my illness. Have lost a few nice friends as I think they got bored with me not accepting invitations to go out due to me being unwell . It can be a very isolating illness, do you find this?
Then when you have the odd good day and feel like getting out for a few hours you don't have anyone to go out with 😢, it can be tough.
Yeah ...a "friend" would never accuse you of being selfish. If she had a day in your shoes trying to live with BX she would understand .
Please excuse my ignorance Alouette but you say you also have PA, could you tell me what this is ? Do you live in the states ?
I have also gained weight 😞 ( I'm blaming the steroids ha ) , my social life is sleeping and watching television (especially in the winter months )xx
alouette lizanneUK1962
Posted
Lizanne, PA is Pseudomonas Aeruginosa, a lovely little bacterium that once you get in your lungs you can never get rid of. If you don't have it, take all the necessary precautions, because it affects your quality of life very negatively!
lizanneUK1962 alouette
Posted
Oh of course, I sussed out BX was abbreviation for bronchiectasis but i was wondering about PA, feel so silly as I have the dreaded pseudomas bug too. Think that's why I'm on constant rotation of antibiotics which i hate You can tell i am new on here xx
alouette lizanneUK1962
Posted
I forgot to add, I'm from East Europe (but I speak American English). I've had PA for 7 years now, the worst thing is seeing my lungs deteriorate year by year. I can remember being able to do things two years ago which I can't now, mostly due to large amounts of sputum. But I'm due to go to the hospital for a round of IV therapy, maybe that fill fix things up a bit. The thing giving me hope is the new advances they keep making, especially that team in China where they managed to regenerate scarred lungs. My goal now is to keep myself as healthy as possible before there are new kinds of treatment.
lizanneUK1962 alouette
Posted
Yeah I agree Alouette, it's frightening when you feel the decline in your lung health, think that's why our lungs must produce so much phlegm due to the pseudomas. Seems like there was very little research for bronchiectasis but it is so good to hear things are progressing now, fingers crossed for our future.
Meant to say your partner sounds so lovely and supportive too, hopefully all works out well for you if you decide to have a family 💞 xx
lizanneUK1962
Posted