I am 26 & have Bronchiectasis. I get ... - Lung Conditions C...
I am 26 & have Bronchiectasis. I get tired & nauseous a lot. Started feeling low & isolated. Anyone else feel this way ?
Hi imply-87 sorry you feel like that you can feel isolated with this complant I have it aswell every day is different. Do you live on your own if you don't mind me asking.?
I live on my own except for Eric my dog. The days must feel very long for you. How long have you been immobile to this extent? X
About a year. I could walk around reasonably well until I had pneumonia in April last year and since then I've been on oxygen and find it really hard to go out. Eric is a cool name for a dog. I've got 2 cats and one in particular is very loyal and affectionate.
I'm not able to work and my hobby is making jewellery which I am trying to turn into a business. I find it therapeutic and positive to have something to show at the end of the day. X
What's your consultant saying about this? I find a pet can be a comfort my kids bought me Eric his 2 in march I wouldn't be without him. You'll have to put pics of your jewellery. X
Unfortunately my consultant and I don't really get on & I feel he has never really fully understood my situation especially the impact that my symptoms have on my day to day life and that of those around me. My GP agrees and after a long battle, I have finally got a referral to see a specialist at the Brompton hospital in London where I am hoping to get on better. Has anyone else been treated there ?
Just spotted this one, I used to live in the Barbican London and know a friend who went to the Brompton its supposed to be excellent she even stayed in the grounds overnight they offered her a room as she was travelling a long way, do get there London is of course the center of excellence, the Brompton I am told is way up there, let me know how you get on with that, xx
Hi impy87, I am so glad that you are being referred to the brompton, a few people on this site have been treated there. Please let us know how it goes , that's if you don't mind. Best of luck.
You could write another post asking for advice from others who had been, if you wanted.
That's brilliant, I've heard it's excellent though not been myself. Several people here go and I think they refer to it as 5* !
One of my daughter's best friends spends a lot of time there with advanced CF
I'm expecting to be discharged from my nearest (teaching) hospital's chest clinic in a couple of weeks, if I ever need a referal again I shall insist on the RB - wish I'd insisted before as it's only half an hour away.
You can self refer apparently thoughI dont knowhow that works. 
Even if you have people around you it doesn't mean you don't feel isolated if others haven't felt like that they can't understand. X
I think you are great, and would love to see your jewellery...
Hi Bally, thank you. Are you on facebook ? Yu can see my jewellery on my page....
rmsjewellerycreations
I haven't worked out if I can put photos on here !
Evening.
I've got emphysema and have a a really large family but I feel really isolated sometimes and totally out of control of my life. Which is why it's so great we can come on here and chat with people who know how it feels.
Hope you feel better soon.
Kim xxx
Hi Kim, thanks for your reply. Although its not nice that other people experience the same feelings, it is a comfort to know that they understand how you feel. Do you find that a lot of people think you can't feel isolated if you have people around you or a big family ?
I've only been a member of this community for about a month but so far I have found all the members really supportive and helpful, and yes it is great to be. Le to come on here and share experiences and just talk. X
Hello Kimmy59, I too have emphysema and live with my daughter and her family but like you say we are not always in control and can be isolated at times, so frustrating when we struggle to breathe, no one can truly understand unless they are the same, its great to be on this site with people who are the same.
Best Wishes Jude xx
Hi Impy-87 and welcome.
I have Bronchiectasis also and a few other lung complaint`s thrown in,
I am married and have seven grandchildren and believe it or not, on bad days I can feel down and lonely.
Lonely because I haven`t got the energy to talk or the puff to be social.
On good days I can make up for that, so for every down..........there`s an up.
So don`t let it get you down.
Tom.
There's a saying your lonelier in a crowd and it's true, but I'm really grateful I have family I don't know how people cope on their own.
Kim xxxx
Hello, I have a daughter with problems at 19 and she has lost out on her teens not the same as you but I have your condition but spend all my time keeping her busy and up-beat, the jewelry is a great thing to be doing. I am in the trade as a retailer and its hard to promote but maybe trying to get a web site going would be a new challenge if your work is unusual and you think it sells. Try for a grant as well to get you started retail is a good therapy it works for my daughter and social media is great for keeping friends going when you cant go out with the girls etc. main thing is your not a young person alone in all of this, you will meet friends on here as well, keep in touch Sue x
Hi Sue,
Thank you for your message and encouraging words.
I am on lots of treatment including ventolin, Ipratropium and sodium chloride nebules every four hours, prednisolone tablets, montelukast, chlorphenamine, inhalers and 3 antibiotics. My meds are reviewed regularly and often changed by hospital teams. I think modern drugs are brilliant and definitely have their place but it's frustrating to take so many and feel that there is not always benefit. I am also on oxygen via a concentrator for about 18 hours a day.
It is a comfort to know I am not alone.
I think a lot of my jewellery is unusual, it definitely has my unique touch to it, I already sell it by doing jewellery parties and people contact me via facebook to place orders. I am working on a website. Rosie x
Well done Rosie at least the jewellery is a good thing for you, let me know how you get on always around for a chat and keep strong, its tough I know especially when your young feeling poorly but as my daughter says there are many worse off that's a good focus. The web it great and social media lets you feel part of friends lives even when some are overseas imagine life without it keep well spring will come soon Sue xx
Hi imply 87, I was wondering what treatment you are being given...do you see your consultant and respiratory nurse regularly. You are so young to be suffering like this
I have three adult asthmatic daughters and they have all had periods when they have been housebound when they were younger, but they are ok now with the right medications.
There are people on this site with bronchiectasis , maybe they can help you. Good luck with the jewellery, have you tried selling it on eBay?
Thinking of you
Hi, yes being unwell, short of breath, nauseous and so damned tired can make you feel very lonely. This forum is wonderful, we all have lung conditions and we get it, we get how each of us feels. There are good days and bad days, but this online family will keep you going through the bad times. It's not nice to know someone else feels as bad as you, but it helps because they totally understand it. The jewellery is a great idea. Make some gemstone jewellery related to our lung conditions and show it on here, I bet you would sell it! I too have a cat and I would be really lost without him. Keep your chin up.
L A xx
Yes, nobody who doesn't have this condition can understand that some days you can run around and some it feels that you are dragging an elephant up the stairs backwards. Also I find it difficult to be interested in food and find that it is when I have failed to eat little and often that nausea will set in. Dry toast and tea or lucozade are the only things that eventually get me over it. It is isolating. I look very well and at school, at work, even socially I have been accused of being lazy when I have turned up feeling like death. People without bronchiectasis would have taken to their beds at the slightest hint of a chest infection. Keep going and try to find some gentle form of exercise that you can do to a DVD. yoga, stretching etc. It stretches your lungs and helps to loosen the sputum. Getting that poison out of your body is the most important thing and also any exercise is hard whilst you are doing it but does make you feel better. I have very extensive lung damage and yet an FEV of 66% which astounds my consultant. Good luck, we are all with you.
Hi stillstanding63,
Thank you for your reply and advice, really helpful. I do stretching combined with my breathing exercises. I am amazed that your FEV is 66% - I expect a lot of that is down to your hard work and perseverance so well done.
I too have been accused of being lazy or "just down in the dumps" when I have made an effort to attend something when I would rather have stayed in bed. Its a bit dis-heartening isn't it when you try so hard and people who don't understand the condition knock you down.
The other thing that really gets me is when people say things like " if your lungs were really as bad as you say then you wouldn't be able to do x, y, z" or "but your look so well"
Do you get this ?
I often say to people now that if they were on 40mg of prednisolone a day for 4-5 years they would look well too !
One positive I think having bronchiectasis and learning to live with it is that is has taught me not to be so judgemental and not to judge a book by its cover, something I think most of us are guilty of at some point.
Like tomC, I have grandchildren. Immy, you have such a good attitude towards life. Wish you all the best of everything.
I try to stay positive not just for my own benefit but for those around me too. Also, I feel I owe it to all the people who have supported me along the way
Impey, Like TomC, I have grandchildren. I think you have a great attitude, and good that you like to come and have a talk. (You might get this message twice - I am good at forgetting to press the submit button.) Love pergola x
I have chronic asthma and bronciectasis, after a bout of pneumonia two years ago I went down hill, really felt that I was never going to be better. But two years later I am now on permanent antibiotics, have been fairly infection free. Still working and have 4 grandchildren. Am feeling a lot better now, but I need time on my own just to get myself back together. When you are having a flare up you do feel very isolated, but things can get better. Try and keep yourself busy and your mind occupied. Take care of yourself x x
Hi Shirleyj,
Thank you for your reply and sharing your experience with me. Its good to know that there is light at the end of the tunnel - I guess its just a case of staying positive and trying to keep myself as well as possible physically and mentally until I get to the end of that tunnel.
I think its a good point you make about sometimes just needing a bit of time to yourself - I do this too. I try to have 20-30 minutes each day where I can be alone and just gather my thoughts, it helps keep things balanced and in check.
I also keep my mind occupied by doing puzzles, making jewellery and watching comedy. I find it hard to be honest with others about how I truly feel but the last few weeks, I've tried to be more open with my friends and family and they have helped me make plans to still enjoy things in a manageable way.
Stay in touch, its good to hear your views. Rosie x
I have Bronchiectasis , Tiredness is part of it, I too find that hard to come to terms with, the nausea could be down to the medications you take, I find the meds help my lungs but make me feel unwell, and unfortunately I have to take them. I try to put the fact that I have Bronchiectasis out of my mind if it gets me down I concentrate on my Dog or making Teddy Bears , and go outside for a walk in the fresh air, this always makes my feel better, be determind not to let it ruin the rest of our lives. I don't know if you have been on BronchiectasisRUs website but there are always people worse than ourselves who are making us laugh there, its a good place to start.
Hi Fern369, No I haven't been on that website, not heard of it before, will definitely visit it now though. Thanks for the suggestion. I've had the nausea before I started any lung treatment & despite drs changing meds around, I often sill feel sick so they think its related to having the constant infections and also due to my oxygen saturations being low. (They are usually around 70-75% on 4L/min oxygen).
I too used to love walking and getting fresh air, I'm not able to walk now but my brother takes me out in my wheelchair so that I can see the great outdoors and not spend all day inside.
Making teddy bears sounds fun and very creative.
I am focusing on making jewellery at the moment as it is something I can do by myself, from home and is good for keeping me mentally well.
Hi Impy
I have bronchiectasis too and get very tired. I work full time and often just collapse into a deep sleep on the sofa when I get home from work. I have it throughout both lungs and Since I have had it after a nasty virus last year i have had to make many changes. The tiredness gets me down and I miss the gym and i find my energy levels deplete throughout the day. It is hard not to get down but I do at times but slowly learning to live with it. I hope you feel brighter soon stay in touch its nice to hear from others with the same condition x
Hi Joolz10,
Thank you for your message and yes I will stay in touch, you are right it is nice to be able to hear other people's opinions and experiences with the same or similar conditions.
Hi impy! Welcome to our group of lung problems. We try to refresh the mind who come here.
since your bout of pneumonia, have you seen your consultant. Can you ask to be referred to a pulmonary nurse team. they are really lovely and down to earth. If you can, have the energy to join a Pulmonary Rehabilitation. they meet once a week for 6 weeks usually. The nurses and physiotherapist there wuld explain all about lungs, their problems, the drugs, the way one gets tired and breathless and the way to overcome it. they assess you and you participate in gentle, necessary exercises. If it sounds daunting, it did me and a lot of others at first, but there are real benefits to draw form this, especially becoming freer in your breathing, even with oxygen bottles.
Have you got a saver device? i.e. the bottle only releases the oxygen when you breathe in and not when you breathe out.
Hello, thanks for your message. Yea I have seen my consultant many times since pneumonia. I am already seen by a pulmonary nurse and respiratory physio at the hospital. I was assessed for pulmonary rehab just before Christmas and they said I would prob benefit from it in the future but that I am not medically well enough to do it at the moment. Its good to know there is something in the pipeline though. At the last oxygen assessment they said a saver device wouldn't be suitable for me.
Yes, it,s horrid, I have c.o.p.d. and get the same symptoms when overtired....
Hi Impy-87 love your name and it suits you. I bet you can be a little imp. If you are feeling low it isn't showing in your posts. I have been uplifted reading all the messages.
Hi Suzy6 - thank you.
Most people who know me say it is my sense of humour that has kept me going and yes, you are right, if I wasn't human, I would probably be an imp !!
A lot of my friends and my respiratory nurse call me Impy ! I think it does suit me. One thing I always say to people is that comedy isn't the opposite of serious, trivia is the opposite of serious and to think that comedy can t be used to help describe/educate/live with a serious issue, is ridiculous in my opinion.
Thanks for your message and I'm glad my positivity comes across. Hope you are feeling well at the moment and be nice to stay in touch. X
I too have Bronchiectasis but not nearly as bad as you. I go to Pulmanary Rehab and although thankfully I don't need Oxygen, several others in my group do. I have noticed how much better they seem now from when they started.I do hope that you get well enough to go as I know it would help you to feel less isolated (we had a really good laugh today)Meeting up with others with similar health problems makes you realise you are not alone. Do you have a Breeth easy group in your area? you may be able to go to a meeting if you have. Just a social thing, no exercises but may help you stop feeling low.
Hello ptliverpool,
Thank you for your message, I found your points helpful and I agree that if I could go to pulmonary rehab it would make me feel less isolated, help to increase my fitness and stamina and be a social activity too. I am hoping that if I continue with my current treatment plan and help myself as much as possible by taking responsibility for some of my health by eating well, doing physio and breathing exercises then I will be able to do pulmonary rehab at some point this year - it is my goal. It is good to hear from someone with the same condition the positive impact that attending pulmonary rehab has had on you and the others in your group. Thank you for sharing your experiences with me.
There is a breathe easy group about half an hour away from me & I would like to go, just got to work out a way to get there ! X
Hi Impy.
Re the breathe easy group. Try contacting them, They may have someone with a car who lives near you who could pick you up etc. I have a car and used to pick up a lady near to me to take her with me to PR as it is hard to get to on public transport. I was only too glad of her company on the journey.
Hi and welcome to the site I have COPD severe I was 42 when diagnosed 10 years ago I gave up smoking put weight on took the weight off. I feel very isolated none of my friends have COPD and no matter how I try to explain they don't understand. You are very young to have a lung condition and being on oxygen I fully understand why you feel the way you do take care.
Hi onamission, love your name !
I'm sorry none of your friends seem to understand how you feel or what you are going through. Thank you for your reply and your understanding to me.
Feel free to stay in touch, maybe we can help each other ? X
Glad you like the name onamission to live till I'm 140 determined to get my pension and some out of this contrary. Sorry for my delay in replying I have been to see my daughter she gave birth to our beautiful granddaughter.
Congrats onamission a new baby girl in the family.
Thanks Steph it is my daughters first baby and I'm so pleased for her and her husband.
Hi there Impy, a very warm welcome to the BLF. Just wanted to say hello as I cannot help with the bronch or with your other health issues which must be so hard for you. It just isn't fair at all. I'm hoping that because you are young there will be medical breakthroughs while you're still young to give you a better quality of life.
It's wonderful that you are optimistic and positive.
Re your jewellery making and starting a business, have you seen the Etsy website?
My niece, in her 30's, is a textile designer, sells her designs all over the world, runs workshops in London and at home on the Cambs/Suffolk border, has won national awards for her modern innovative patchwork - oh and published a beautiful book!
Lucie doesn't suffer ill health at all, I only want to show how from small acorns a business can grow and while her business isn't huge, she has fulfilment and loves what she does.
It's true that most members here are a fair bit older than you because many lung issues hit us in later years. There are many who've had bronch since birth/childhood and there are young members too with added health issues.
I wish the very best for you, sincerely, Peeg xx
Hi peeg,
Thanks for your message. Hearing about your niece Lucie has encouraged me to carry on with my jewellery. One of the biggest things for me to overcome is how to turn a big hobby into a small business especially with limited resources.
Yes, I have seen the Etsy website & aim to use it to sell my jewellery in the future.
I have a facebook page for my jewellery & also hold jewellery parties at home so that I can sell bits but also enjoy the social side without having to go out or pack all my stuff up.
Thank you for your good wishes, very kind. X
Try your local breathe easy group. It helps to talk to people that knows what you are going through.
Hi Impy
A very warm welcome to you hun.
Yes I get fatigue and nausea. Have had bronchiectasis since babyhood and latterly asthma and inflam arthiritis.
Sooo pleased you are being referred to the Brompton. There are quite a few people on here who go to the Brompton and I also know some on Bronchiectasis r us (BRUS) who do too and everyone speaks very highly of the treatment they have received.
Although I apparently spent some time in oxygen tents as a littly (yes I'm and old lass now), I am not on oxygen thankfully but there are lots of peeps on here and on BRUS who are.
I just love your positive attitude sweet - we're made of strong stuff us bronchiectatics that's for sure.
I am a sucker for dress jewellery, so let us know where we can see your stuff and I am sure you will have a customer here.
Tests and treatments have improved so much over the years since I started with this game, and there will be many more improvements with treatments and medication within your life time.
Lovely to meet you Impy.
love cx
Hi Impy, I am saddened to hear that you have bronch it is a difficult condition to cope with. I have had bronch since I was 2 yrs and am now a youthful pensioner! It is such a difficult condition to have when you are young as you can look quite well at times even when you are exhausted. People who have never experienced it have no real idea how it is affecting you inside. Even family members don't really get it. And it is so frustrating not to be able to do things. You are doing absolutely the right thing - keep as busy as you can.
Going onto oxygen therapy is an emotional rollercoaster - you don't want to for all sorts of reasons, but you know you must. Also with physio - you don't want to do it, don't want people to see you doing it, but you know you HAVE to do it.
And it is soooo tiring. With low oxygen levels, even on oxygen, we struggle to do everything beyond just sitting. I am on 5Lpm resting and ambulatory, 24/7. My oxygen nurse took me down from 8Lpm ambulatory because I am retaining co2 and I struggle now to do anything.
I've forgotten if you said how long you have had bronch. My sats dropped when I had a bad infection last Feb and haven't recovered. My new consultant (fell out with the old one!!!) has been great and is leaving no stone unturned. I hope your new consultant at the Brompton can sort you out.
Hello happyfeet59
Thank you for your comments, really helpful.
I totally relate to what you say about not wanting to do physio or for other people to see you doing it (especially on a bad day) but we know that is what we have to do to keep ourselves as well as we can. I too fell out with my consultant here at my local hospital so I am hoping to 'start over' with the new one at the Brompton.
I have had Bronchiectasis since I was an infant.
Take care x
Hope you don't have to wait too long. Glad to hear you are feeling more positive.
Hello folks,
I just wanted to say a huge Thank You to you all. I wasn't in a good place last week & I am happy to say I am feeling more positive this week.
I am sure part of that is down to all the wonderful support I have had from all you lovely people. I was slightly overwhelmed by all your kind messages and advice, so here is a BIG Impy hug to you all x
Hi
I have bronchiectasis and i do get very tired especially when i have chest infections which happens every 4-5wks despite being on preventative antibiotics. It makes sense that we would be tired when we constantly have so much mucus blocking our air ways
