What difference has being a member of... - Lung Conditions C...
What difference has being a member of the BLF community made to you? (You can choose more than one answer)
180 VotersPlease select all that apply:
I have made some REALLY good friends through the BLF. I dont respond any more because a) I am not knowlegeable enough, and b) was driven off by trolls.
You should return. We all have a little knowledege to share and can all empathise and show support in circumstances where knowledge is lacking. Trolls should NEVER be allowed to win.
hi auntymary hear hear sod the trolls just laugh at them and at the same time remember karma
You don't need to be knowledgeable to use this site , it is for giving and receiving , i am sure there are things you can help with , people have all sorts of needs and all sorts of people to talk to . Trolls are low life who can't hurt you unless you let them by not posting on the site and depriving us of your company xxxx Dinny xxxx
Hi Amazing Grace. Sorry to hear you encountered trolls on this site. Just to let you know, anyone who encounters abusive, malicious or deliberately misleading content can use the 'Report' option to the top right if each comment to let us know. You can also use the green 'Feedback' tab on the right of the screen. Naturally we take issues like this very seriously and action will be taken if required. As for being knowledgeable enough, the web community is all about sharing personal views and experiences, and no one knows about your experiences better than you! As the lovely comments by Aunty Mary and Dinny Rayner show, the community would like to have you back involved when you're ready, so hopefully we'll see you active again soon. Take care, the BLF team.
The right of free speech is there for all it can not be taken away, every voice must be heard or the story is broken up. Bring it on and have your voice heard by people that know where you are coming from, that know what you are feeling because they have been there.
I have learned a lot about the condition through this site and it has really shown me that a lot of people have this condition in varying degrees of severity.
Like Lynne the realisation that others are experiencing different degrees of severity and that they can still post -in many cases some showing they can take a lighter view than others but still pass on their knowledge. The almost only box I did not tick was the confidence in passing on concerns about the illness to doctors-maybe my own fault as I couldn't give up smoking straight away but have now with the help of patches.
I totally agree with you, I think it is because the GP's do not understand this kind of illness otherwise they would be more willing to help, we have found out about things from here and the web that the doctors themselves should have told us about.
This is a great way of finding out that you are not on your onw with lung disease, [copd] it is nice to talk to other sufferers good luck to BLF
It has been absolutely fantastic to moan and groan about what is happening in your life and getting so much help and advice back. The people on here are wonderful, and when you read all their comments you do not feel alone.
as above copd is a isolating discease and its great to recieve information and listen to other people in a simular situation it helps a lot thanks to B L F
I admit now to people close to me when I find it hard going and that helps as my needs are better accommodated and less is expected (eg distance of walking) better days are better celebrated and used too. There are so many kind and helpful people here and I am amazed at how much I have learned about living with COPD and managing it better. GPs and local respiratory nurses know a fraction of what I now know ! that's rather worrying. Congrats BLF for this open and democratic space. Still think some more monitoring from you would help us all even more - so butt in whenever you fancy 
i find it very helpful reading all the medication that different people use. have learnt a lot and find that some but not all have helped me also.
read the questions/blogs for ages before asking a question. Nicest bunch of people I know !
have welcomed me and my problems. picked up some coping methods and more importantly the realisation that I am not alone..bless each and every one.
thank you for providing this service.
Able to (try to) help other sufferers manage their condition
I feel that I can help others in some ways.Let others know that they are not alone and also advise them to join their local Breathe Easy group for further friendshipsetc.Richard Cornish
I often feel my family do not understand what i am going through and to have a site where i can talk about anything without feeling like a hypochondriac is important as it makes me feel optimistic.
I'm really relieved that I've only got asthma and that thankfully i'm responding well to treatment!
I have made some good friends on here, and did find it very helpful and good place to talk, but dont post anymore since the change over of the website, as i am not keen on the new site and looks hard to post and see posts and looks more like a blog and less like a forum
Sinead
The new community does look different from the old - but once you get used to it (and it doesn't take long) you will find it is much the same as the old - but I think it's much better. You can still "chat" through the blogs - and also ask questions.
I was a bit worried about the change in format at first but now I don't know why I worried. So come on give it a try.
Mark
It's good to have a place where we can ask questions, get advice, share experiences and hopefully help each other
I love this space, I would be feeling very isolated if I didn't have this website, my partner likes to bury his head in the sand, and if I feel poorly I end up having to reasure him that I'm OK, I dont want to worry my daughters, one of whom has her own health problems, a friend of mine was saying how her brother has COPD, and how it's his own fault for smoking, therefore I wont be saying anything to her. I am curious about how the old website looked, and how can we make it more of a forum, ..............also, what's a troll.............sorry not very saffey with new techno stuff, like computers, sat navs, tin opener's, peace all, hope it's not too cold for people
Have`nt long joined although been diagnosed with copd since last year, already finding the site helpful. feel very frightened of copd somedays.
Hi everyone,this is the first time for me!
You've alll helped me so much and I feel less alone
With my COPD, which I've had for several years,
Your courage and the heart you have for others
is just wonderful. I'm hoping some of your spirit will
brush off on me!
Love to all of you and so many thanks,
Shilevy xxx
I have been disappointed by how little information sufferers have been given in general. I continue be angered by the lack of attention to lung problems by the medical profession and the amount of resource pumped into heart and cancer research and care by comparison to the amount invested in lung diseases. This site so far has only cemented that view.
alblownout ,i agree with u 100 per cent
allblown out 100 per cent agree with u.copd wat is that,i have it now and never heard of it bldy shambles
Im new, but already feeling good been part this group, great help and advice given by those who like me suffer with COPD, and who better, thanks all xxx
after having years of asthma,and every med under the sun,too be told i had mod copd this year was like a death sentence too me ( and believe me i don't scare easily ) i went on a few sites before this,and just was so sure that my number was up,then i logged on too this site,and although i'm still new and rather shy too speak,the advise that is given freely,by people who know just how it all feels has been great,i can safely say although it is still a battle,the war is not over,i'm still ready too fight,so thank-you for this wonderful site
hi poeticlady,i was new to this site was tld at xmas cpd moderate,god i thought wat have i got,never even heard of the sod.ex gp bldy ignorant and useless couldnt even tell me my xray last june said copd bldy clown ignored it as ok dont want see u results ok.i have new gp now he is ok .i have since found out in my neigherber hood,ex gp as 7 patients all with copd,god help them.so point being he did no about copd and wat my xray was,slight hyperinflation of lungs the clown ,ive been told had he acted then id be mild and ceased cigs id have been ok,+ i ceased cigs at xmas end of them.i have learnt alot of hear,but wen im not sure i have rung blv and asked them,take care,
The site is helping me get through a long and often dark tunnel. Also, it has been great to meet so many friendly like-minds.
The first this I do in the morning is look on this site, there is such a mixture of personalities and the blogs and questions are so varied.
I can get up feeling awful and sorry for myself and there is always someone who has put something on to make me smile, even laugh. Lift my spirits.
If I have a question there are always people who can give advice. and if they don't know the answer point you to someone who does, or even to give something from my experiences which I think may help others.
I wish I had seen this site a long long time ago, I dip in and out all day I love to see how people manage with their conditions, such determination which I hope will wash off on me.
Wish I didn't go to bed so early as lots is written quite late at night.
Supporting each other that's what it's all about, hope it continues for al long time,
polly
I HAVE HAD ASTHMA FOR OVER 50YEARS,WHEN I NOTICED THE CHANGES TO MY BREATHING. BUT EVERYTIME I COMPLAINED TO MY GP THEY JUST GAVE ME MORE
INHALERS.UNTIL EVENTUALY THEY GAVE ME A LUNG FUNCTION TEST.THEN I WAS REFERED TO LOCAL HOSPITAL,WHERE THE BLF PUT ME THROUGH ALL THE TESTS,AND I WAS DIAGNOSED WITH C.O.P.D.I FELT IN ONE WAY GLAD THAT I WASN'T
JUST IMAGINING IT ALL.
SINCE GOING TO THE BLF,I AM NOT AFRAID TO GET OUT OF BREATH DOING EVERY DAY CHORES,AS IT USED TO WORRY ME SO MUCH I WOULDN'T EVEN DO ANYTHING.
SO EXPLAINING WHAT C.O.P.D. WAS,AND WHAT TO DO IF ANY CHANGES OCCURED
WAS A BIG WEIGHT OFF MY MIND,AND ALSO TO MY FAMILY.
Great for info advice, making friends Val
i feel beter when i read about others in my condition it helps me to cope
I am the members sec at Swansea Breathe Easy group and love talking to new members,or people just popping in to see what the group is all about and seeing how at ease they become when the start talking to people with the same problems.
I found I ticked every box in the poll, BLF community really has been a god send for me
Recent subscriber not able to comment as yet.
I look forward to reading what other members are doing/ thinking
Great site many thanks to the BLF for putting it up.
The advice, friendship and the opportunity to share with such a warm hearted group of people is priceless and I'm convinced of therapeutic help.
Many thanks.
Chris
