I wonder.: I do not post much now, nor... - Lung Conditions C...

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I wonder.

Lynne1955 profile image
79 Replies

I do not post much now, nor will in the future.

It has however, become really apparent that less new people with lung disease are asking questions or blogging.

Might it be because this site has very little serious stuff on it now?

Just look before you disagree. Hardly any new people. I suspect they are put off from asking serious questions.

I wish you all well though.

Lynne xx

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Lynne1955 profile image
Lynne1955
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79 Replies
scrobbitty profile image
scrobbitty

That would be very sad Lynne, you are a very valued member here. I think it's cyclic with new people, they pop up quite frequently. I have seen many new people on the questions tabs. :) xx

Lynne1955 profile image
Lynne1955 in reply toscrobbitty

There are many people on here that are great. I will miss them, but some are now my friends on FB. Others who want to stay in touch can PM me. I will still check those xx

scrobbitty profile image
scrobbitty in reply toLynne1955

Well for those that you would miss, at least pop in and leave a comment in support as and when you feel happy to do so. :) xx

in reply toscrobbitty

I can only echo those sentiments :)

Sandra x x x

Whatever makes you happy, Lynne! Life is far too short to put up with anything that bothers you. I do see quite a few newcomers.

in reply to

I have described my lung condition on many occasions. Believe me, it is real!! I have an aptment letter to show for it.

in reply to

And the meds. sheet!!

It's sad that it has come to this Lynne, sad for others also who may be put off by the general chat choices that could easily be fulfilled elsewhere.

Sad that the community appears to have lost the reason for being for the greater good of all.

I will miss you but will keep in touch.

Hugs BC x

in reply to

Well, looking at the questions just now, I immediately see 3 that have not been answered, if only to direct the people to the BLF helpline - great advert for anyone new visiting the forum tonight! I have noticed recently that there have been quite a few new people appearing. If there is a wide range of topics then that must be for the "greater good of ALL". Perhaps videos imploring us all to be kind and trying to "restore faith in human nature" have nothing to do with lung conditions either, but we are still being subjected to them. I read what interests me and ignore the rest.

in reply to

I am glad you found my blogs and comments of interest :) x

in reply to

I think you have misunderstood me!

in reply to

So sorry I read your last line to read "You read things that interest you and ignore the rest" since you know about my blogs and your have read my comments here I just assumed you enjoyed reading my blogs and comments ;)

Its very sad Lynne is leaving us don't you think? A great loss to the community.

in reply to

Lynne hasn't said she's leaving, just that she'll be here less and I hope she'll change her mind, she has plenty friends here.

in reply to

Its is a great loss to the lung support discussion forum.

There are plenty of us talk about our condition and ask and answer questions, from our own experiences a little light heartedness is also needed, i for one do not want to be reminded all the time I'm on a road to nowhere, and all i can do is slow it down,

sorry you feel the way you do about the forum, but if you look in questions there are plenty there being asked.

in reply to

Oh! One thing it would be nice to see is more questions being asked in the right place

Sorry to see you go Lynne,I personally like the humour on here,it's great to have a laugh,it's the best medicine.and on the questions side there is always useful info to help.

Do please pop in,I haven't been here to long but have always read what you have said.

Take care x

Is4bell4 profile image
Is4bell4

Awe that is a shame Lynne.

I think the newcomers like me start with serious health questions and then need some release and find coping with humour a nice way to forget, have a smile.

I am putting up a new blog soon, following on from my first post. I had worried about giving up smoking due to my UC. Well it has raised it's ugly head again. Afraid to go out should I get caught short.

I did know the consequences of a smoker, I chose to smoke to give me some quality of life.

AND yes! COPD are the results.

But guess I did manage to travel to all the places I have dreamed of that I was unable to do.

I gave up, and only 4 weeks later I am in trouble.

GP tomoz. altho' I guess I know the answer, a stoma

plus COPD. arghh.

Take care Lynne, pop in now and again.

xx Ros xx

I believe that with a large community of different people, we need a mix, humour, jokes, music, copy and paste You Tube videos, health advice that is backed up by the medical profession, personal experiences (health and otherwise). I believe that in the main that is what we have. However if you do not feel that way then I an sure you will be missed if you leave.

KingoftheCocktails profile image
KingoftheCocktails

I think there is something for everyone.It has grown since it's inception into a site full of vibes with topics of all kinds which I find most desirable to this site. I have had many new bloggers over the past few weeks saying what a nice friendly site this is and enjoying the fact that they can get knowledgeable friendly advice of all types here and from the BLF

KOTC

in reply toKingoftheCocktails

Its a pity all those new bloggers don't stay with us KOTC. Very sad.

in reply to

I'm a new blogger and have stayed BECAUSE of the humour.

I have had COPD for 5 years, don't want a serious site, already belonged to one, it made me seriously depressed, everyone who I worked with told me to leave it, which I did, The site is friendly and helpful, I want to enjoy my life, laughing is one of the best tonics

Puffthemagicdragon profile image
Puffthemagicdragon in reply to

Well said ! :)

I think there are plenty of sites out there that are all very serious with no humour. I prefer a site with humour and friendliness as well which is why I come on here. I think the majority of us prefer that. Those that don't are free to go elsewhere. Surely thats better than keep complaining about this site isn't it? I have learnt a lot here about my lung disease but I do enjoy the mix. Why not do the more serious sites Lynne then come in here if you fancy a bit of humour as well?

Having said that I will miss you if you go but it is your choice.

Bev x

in reply to

loads of general chat and fun forums out there also Bev. We just need a healthy mix which appears to include anyone that may venture here. But generally leaning toward a lung support discussion forum.

in reply to

And thats exactly what this site does BlakeyC

in reply to

Shame Lynne has spoken and others have left because they share a different view.

in reply to

Agreed, hypercat!

Lillytan profile image
Lillytan

Can I comment....as a new person to this site I would like to say that everytime I have asked a question quite a few wonderfully generous people have responded and given me advice along with support and I am very grateful for this...And I am also very grateful to read the happy, positive posts that people are putting on here, it shows strength of character..not giving up and into the illness that has befallen you y'all and a sense of humor/ joy for life that will help people on here either long term or new ones to have a bit of lightness in their day...ugh, sorry hope that makes sense....as for the phone number , it has been given to me a few times, I've just not called yet as I'm not sure what i would say! So I want to send a thank you to all on here and also wish every one a good nights sleep!! Xx

in reply toLillytan

I'm also new and agree whole heartedly with you

in reply toLillytan

hi lillytan, I joined a few weeks before you and have had the same experience, everyone jumping in and helping me when I needed it, and giving me loads of support. You sleep well too

anna xx

KingoftheCocktails profile image
KingoftheCocktails in reply toLillytan

Thank you for your kind words Lillytan

I just looked back at blogs and questions I have answered in last 24 hours, plenty of mixed topics for me. Have answered health related from swollen ankles to ct scans, supported people grieving, and others who have been down or poorly, a few jokes and nutrition blog regarding carbs in our diet. I have seen quite a few new people on the board lately, and was only telling my son how many new people have joined since me 12 weeks ago. Quite new myself and I blog and ask questions. Lovely community shame you're choosing to leave it.

anna xx

sillywitch profile image
sillywitch

I have noticed a lot of music video links on here recently, they seem to be popular, at least to the people who blog them, & I know there are too many music sites to mention, perhaps they help lungs if you are singing along, I would never inflict my singing voice on anyone, but many seem to just be pointless unless thats the sort of thing you like, we dont complain about them though, it,s not our way!!!

The Witch

Perhaps those who complain about too much humour and not enough lung related topics could confine their blogs to that. Lead the way so to speak. Otherwise its the pot calling the kettle black...

in reply to

Perhaps you could consider that those who speak out aren't doing so just to complain....

And perhaps also you could consider that when someone blogs lung related topic that its not pushed right off the board by cliche chat blogs one after the other mmmmm?

Pity that.

Someone new who may have found something lung related useful to them.

Puffthemagicdragon profile image
Puffthemagicdragon

I try to answer all the newcomers questions or point them in the right direction. I don't get in from work until about 10.30 pm some days so my responses may be a bit late.

I have very severe emphysema and I need a good laugh now and again so I can forget about it once in a while. Also laughter is to do with the lungs so it is lung related ! :)

in reply toPuffthemagicdragon

I can understand that Puff, its a pity the new forum layout is not yet formed, its a pity we are losing Lynne's presence also.

Its also lung related to discuss lung related boom boom ;)

Well said Puff!

lynne - by the way only two of your last 10 blogs were to do with your copd. for the remaining

2 were moaning about this forum

1 was about your allotment theft

1 was about your holiday in devon

1 was about your gardening and bbq and wine

1 was a music video

1 was about your name change

and 1 was a link to something neither you nor me could understand.

why do you want to complain when you do the same as every one else? I do not understand.

in reply to

Aren't you just friendly helpful and supportive.

jeeeeeeeeez

I think I will say good bye to you all and hope you continue to enjoy yourselves disregarding all others.

in reply to

Is that a goodbye goodbye, !! :) yippee

Or a see you tomorrow goodbye !! :( boo hoo

in reply to

Good!!

in reply to

Oh that is great news! I hope you actually do.

Is that a promise? :)

medow profile image
medow

Opp's. ! I think there's a great mix on this site, I like the way we all keep connected, whether with funnies, what we've been up to, stories of people's holidays, gardens, pets, it builds the relationships on here, keeps us in touch, lets us know more about each other, other than our lung conditions, and then when we are scared, unsure, need some advice, or need some support, we get this from people that we know, because people on here are so generous with themselves, more generous than me, I feel like I 'know' people on here through the stories they post x x x peace all

in reply tomedow

me too medow, I love this community, it is all the different topics that gives different personalities, new and old, a chance to join in. Maybe someone that has been just reading for a long time, will come across a topic they feel they can relate too, then they can just jump in, once in the water is so lovely they too will feel at home.

Hope you are ok tonight as you like me are up very late :)

anna x

in reply to

Can you not sleep either, Anna? x x x

in reply to

no I can't sleep tonight - wide awake

in reply to

Me too, such a shame as well, I was looking forward to a sleep. Such is life ;)

in reply to

i think you and me are always last to sleep, I was yawning my head off at 8ish, now not a yawn in sight :)

willowgirl profile image
willowgirl in reply to

hi, ive been a member for a while, dont think ive blogged or asked ??????, possibly because ive that many things wrong id be on comp all day., but i do find the answers i need and enjoy the banter, feel as if i know you regular posters so thank you, i do pop an answer on sometimes if i feel i can, i also think this site is a life line for those house bound and cannot do everyday things that the more mobile of us can so that possibly why some folks say its the same people all the time., if i find something of no interest i just move on to something that is, life is to short to keep moaning about things of this nature, as the saying goes "you cant please all the people all th time" so from a resident lurker please carry on, am sure one day i will become a neighbour to you all on a permanent basis, also agree that some of the serious sites are too depressing, as said before i can go on a medical site if i need to know anything , here i find out how real people deal with symptoms and side effects etc......carry on as we are, love the site and people on it, hope you all have an easy day xxx

in reply tomedow

Medow, you've summed it up brilliantly. We do get to know each other through our honesty, our sincerity and our genuine caring for each other. I am not defined by my copd, I try wherever possible to be me, not my illness. But I know if I blog on here for help, I'll get it, such as tonight when I blogged on my respiratory specialists appointment. So many people came forward with advice, it's heartening knowing I'm not on this journey alone. :)

Sandra x x x

SusieQs profile image
SusieQs

I for one will be sorry to see Lynne go. Being relatively new on here she has taken the time to answer a lot of my questions. It seems to me that people forget what others have contributed to this site and are quick enough to crawl out of the woodwork and jump on them if they speak out of term.

Sue.

in reply toSusieQs

Hear hear

in reply toSusieQs

Hear hear.

Thank you so much for showing your support Sue and Jennyren.

peege profile image
peege in reply to

you damn well stick around too BC. The information you put up is invaluable to me and others who might be floundering with our different levels of disease. P

peege profile image
peege in reply toSusieQs

Same here Susie, thank you for saying that.

Lynne very supportive to me over the last few months I've been here.

To others always encouraging, especially to people trying to stop smoking, advocating exercise and being generous with her knowledge.

I will miss her presence, if I read correctly she's not going, just posting less.

Lynne's been quite unwell recently and I for one feel badly for not being more supportive to her. The above spat is awful. Very sad people can be so mean and unkind. Thanks again

O2Trees profile image
O2Trees in reply topeege

It is awful Peeg. I do not understand the vindictiveness and have already reported it as Im sure others have - its completely inappropriate to the site.

Thanks for your post.

libbygood profile image
libbygood

There are many of the 'not so serious' bloggers who answer questions, me being one. We also need humour on this site, if Lynne feels humour inappropriate then that is her choice. I have noticed many new people just lately saying how they have been helped and also cheered up by the humour and what a caring and helpful group we are. I love the lightheatedness but I also know if I have a lung related problem I will be helped. Every so often this topic comes up, we are all poorly lets just live and let live.

Lib x

CornishBrian profile image
CornishBrian

I am new to this site because I have only recently had internet and then found the site. BUT...I am not new to COPD as I was diagnosed 22 years ago. I come onto this site to read blogs and info that others post and when I am a tad immobile because of my condition, I come on here to be cheered up and to meet a community that have the same sort of problems that I have. In the 22 years that I have suffered, I have gain a terrific amount of info from various sources, some traditional and some "fringe". I have also taken part in research at Nottingham City Hospital. The point I am trying to make is that I can go quite easily to various groups and organisations for upto date and accurate info. However, they can't supply humour , companionship and the feeling of being cherished, 24 hours a day, 7 days a week AND all without any risk of infection. More power to their elbow I say. If the could supply an occasional whisky on line too, so much the better.

in reply toCornishBrian

What a lovely thing to say, thankyou from one of the more lighthearted members. If I haven't saiid it, welcome to the site. Your knowledge and experience will be invaluable.

Tina x :)

It's an Internet forum, it is quite normal for people to come and go.

I am pretty new myself, I joined in April this year looking for answers to some questions I had about asthma.

The main reason I am still a visitor is because in addition to the useful information I got and always get when i pose a lung related question, I also got to know some lovely people here and I really enjoy the chatty and jokey threads, they cheer me up and I need that this year as a lot of sad things have happened in my life.

What I don't understand, if I may say so, is why some people keep on complaining about the non medical threads when they are usually people who post threads on other topics too.

If someone wants to leave, go ahead and leave, don't keep starting threads or writing posts all over someone else's thread threatening to leave. It sounds like attention seeking when done too often. If you don't like it, explain why and contact the admin and HU.

I have left forums and at some point I will leave this one, we all move on in life and membership of an Internet forum is almost always temporary.

What is special about this forum I find, is the amazing support and spirit of friendship I have encountered here. Thank you to those people, you know who you are :-)

Lynne, I wish you well and look forward to seeing you post whenever you do pop back in xxx

The other person who threatened on this thread that they'd leave, GOODBYE.

I certainly have been helped with my condition. I do feel guilty that it is probably age related. Also the support I have been given, regarding my husband, who doesn't have a lung related condition. I am so grateful for this. Lovely people, but there always has to be the odd one that is hard to understand.

sassy59 profile image
sassy59

Dear Lynne, please pop in from time to time as I like to read your points of view on various topics, lung related or not. A few weeks back I decided I would not come on here very often because the bickering that was going on was mind numbingly dull and boring but then I thought about it and decided, what the heck! I like the site and enjoy the mix, some more than others, and if I do not like a blog or comment I just ignore it and don't reply. It is good to have humour, music, fun and lung related topics on here and I have noticed lots of newcomers lately so come on, stay and join in. Go on......you know you want to! xxxx :)

Lynne1955 profile image
Lynne1955 in reply tosassy59

Hi Sassy, lovely to hear from you. In my post I said I did not post much now, and won't in the future. I didn't say I was leaving the site, although many have interpreted it that way. Nor did I say that I didn't think there should be any humour, in fact I've always supported a degree of humour, I just wondered about the amount of it now.

People have read far more into the blog than it actually said.

So I might pop up from time to time. X

sassy59 profile image
sassy59 in reply toLynne1955

I did get the idea that you were not actually leaving but it is always good to hear from you. You are certainly entitled to your opinion and I look forward to reading a blog from you at sometime in the future. Take care. Lots of love. xx

James48 profile image
James48

Laughter is absolutley the best medicine. It's a great community and needs to keep going. Maybe the moderators could bring our attention to unanswered questions somehow - a red symbol or something?

I can see how it puts people off when opening the blog every day, there's lots of jokes but it's easy to pick and choose what interests you.

I have found plenty of information using the search function, as many questions have been asked before but new and up to date information is always needed. I have been dissapointed by people not answering e mails relating to specific aspects of their condtion that I also experence. :)

Gordon57 profile image
Gordon57

I've always supported having a bit of humour within the blogs, but sometimes despair at the sheer amount of 'jokes' that get posted as individual topics. It is these that seem to detract from the purpose of the site for me.

If someone posts something, be that a lung condition, a blog about a day out, the results of their cat's x-ray, or whatever, then people tend to give light hearted comments in their replies to brighten up the place. What seems to be causing the problem is that several people will all post 'humour' and the other blogs get shuffled off the main page, displacing the more useful content for those visiting the site. You'd be amazed how many people think that's all the content this site has, those 10 subjects on the main page - but there are hundreds of previous posts that are available, if you just know where to look... ;)

Yes, there are changes supposed to be happening, which will give additional areas to post in. I understood these would be defined by the service user, so the BLF will set up whatever categories they choose and maybe the humour will then be tolerated much better as it will not be cluttering up the main blogs area. There was also talk about a chat area being set up, where those who wanted to have a bit of banter could express themselves amongst other like-minded people.

And that's the point, not everyone is like-minded. Thousands of people have joined as members, the greater majority have not posted anything but came to get information about their condition and I fear that many have been put off because they see the site is flooded with 'humour' so much. I used to answer a heck of a lot of questions on many topics but that input has diminished a heck of a lot as much of what is being posted is being flooded with arguments and stuff that is nothing to do with this site. This is Health Unlocked, with a sub-forum under the banner of the BLF.

People are also being put off contributing, or even staying, by a minority who like to cause mayhem by posting inflammatory comments to incite others to respond, and therefore corrupt yet another topic. I have been vocal about the lack of moderation at times, and the way the site has degenerated to the point where people are leaving because someone has 'had a go' at them like this. We are told to 'ignore and report' but it can then take days before something is actioned.

There are many things 'wrong' with the site, I've mentioned the low level of moderation and control, but there's also a distinct lack of information on how to use the site - how do you find information on a particular topic, how do you read previous blogs, how can you add a smiley face, or link to some information on another site...? What links are allowed? The list goes on and needs something positive to help newcomers, and even some long term users who don't know how to do some things.

Mark, the helpline manager and moderator of this site for the BLF has said "The popularity of the web community has completely taken us all by surprise. If I could add another thing to my wish list, I’d want a dedicated adviser to have a full-time presence on the web community as I believe this is a great avenue for reaching out to patients, carers, parents and healthcare professionals who can’t always make it to our Breathe Easy support groups."

(source: blf.org.uk/Page/Meet-the-fa... )

The moderators do not define the way the site works, they just use what's made available by the Health Unlocked team. The changes to the site, which should allow for some new categories, may help. In the meantime I will happily click 'report' if I see things I disagree with, especially if the questions area starts to get as out of hand as the blogs have. :(

This site has a purpose, but allows for a great deal of flexibility and, as I started out by saying, there's room for humour within topics, but I do agree that there's often a big difference in the balance when the blogs get flooded with 'jokes' as separate topics. That's where a line needs to be drawn, but I don't see it happening. Instead the BLF could do as they did before, and just shut the forums down as they simply can't devote the resources and time to manage this area.

sassy59 profile image
sassy59 in reply toGordon57

Well said Gordon. xx

Bliss2 profile image
Bliss2 in reply toGordon57

Well said Gordon I love reading your blogs xx

Chinka profile image
Chinka

I think this is a great site, its all things to all people. If you don't like it you don't have to read it, if you have nothing to ask or say, that's okay too. I for one do not always want to talk about my illness, I don't ask many questions because there is usually someone that asks before me so I just read your answers. Like the person earlier, if it does not interest me I don't read it, thats not being rude just me exercising my right. I think you are all wonderful, whatever it is you do and whatever say, keep it up..

O2Trees profile image
O2Trees

What i dont think is always recognised is that people have different ways of coping with their illness. I look for information - its what helps my anxiety, but i know for others too much information makes for further anxiety, and humour helps more. There is no right or wrong way.

And there's nothing intrinsically wrong with having humour here but as Gordon and some others have said, its the balance which is the issue. I'm not interested in looking for humour here - most of it isnt my style - neither do i wish to share my life on the site, other than relating to copd and connected health issues. But I realise these things are crucial for many, especially for those living alone, so if we ever get it, separate headings/pages will help.

In the meantime, please people get over the nastiness - its unworthy of folk who in other ways seem empathic and intelligent.

peege profile image
peege in reply toO2Trees

hear hear, nicely put, thank you

lrryjay profile image
lrryjay

Hi all, I am new to this site. I very rarely comment but I am pleased to be here. I like most topics. If I have any questions I will ask and from what I have already seen I feel sure that I will recieve good advice. I have COPD at an advanced level3 and I also have left ventricular failure. The humor on this site helps to brighten my day. My wife and I enjoy the lift it gives us both. It is so nice to see her laugh instead of the worried look she wears most of the time. I thank you all for this and your comments. Please don't any of you leave or change anything. It is a good community and most appreciated.

Many thanks,

Larry

scrobbitty profile image
scrobbitty in reply tolrryjay

Hi Irryjay, welcome if I haven't already welcomed you. :) Very glad you like the community here, it works mostly well, sometimes a little glitch. I think I am not that far away from you - live in Ferndown, nearly just down the road LOL :) xx

lrryjay profile image
lrryjay in reply toscrobbitty

Hi, thanks for the welcome. Nice to hear from you.

Larry.

Gordon57 profile image
Gordon57

Chinka and O2Trees have highlighted something very important - LOADS of people come here to look for answers to their problems, but do not want to talk about it. Thanks for your posts to confirm this :)

It's OK for people to say 'but we're posting health stuff as well as jokes' but we have to consider that the majority will be coming to find answers, not giggles. I'm very pleased to see that Health Unlocked have announced that the long awaited changes will be here next week and some of the issues will be dealt with by keeping the outright jokes away from the blogs and questions. I'm waiting to see just what the new topic headings will be...

As for the nastiness, you will get that in any community. Always someone wanting to stir things up. 'Ignore and Report' is the way to deal with such idiots.

Tamara70 profile image
Tamara70

I joined the site about three months ago as I have a severe lung condition. I have learned so

much regarding all sorts of illnesses to do with lungs and I have learned a lot about Bronchiectasis which is what I have.

Any time I posted a request it was answered twofold.

I enjoy the site, the humour, and the videos.

However, if I have one complaint and that is the if someone asks a specific question to do with their health sometimes the answers veer off to something completely different leaving the questioner being no wiser.

Tamara

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