I have wondered whether the site could be split into medical problems or relating to medical issues and social interchanges about cats and dogs and gardens etc. I have to scroll through so much stuff sometimes to see anything that may be of help to me.
Medical support or socialising ? - Lung Conditions C...
Medical support or socialising ?
Written by
Eve3066
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46 Replies
•
I wish that were possible. Out of 6 posts so far this morning, only 2 are health-related.
• in reply to
Hanne, here we go again it seems! Hard hats on..............
Hi eve, I hope you are ok.
This issue has been raised many times in the three years that I have been a member.....posts are arranged by topic, on the right of your screen there is a list and you can click on the topic that interests you.
Some days there are a lot of health posts, sometimes more social ones.....that's how it goes.
Personally I love the eclectic mix, it makes for a dynamic supportive site in my view. Others might not agree but we are all different.
Take care
Hidden
Good morning Eve3066,
I'm afraid I am guilty of posting many many non-health related posts. Sometimes they get me through the day....and the night. If this makes me selfish I apologise.
On the page you write your post, where you have to indicate whether you want it to remain within the site or go public, you will see the word "options" here you can choose which category you want your post to go into....then on the new posts page, as knitter says click on the posts you want to see under the heading Topics.
I hope you are having a good day now it is not so hot.
• in reply to
It depends how you access the site. My mobile phone just brings up the news feed, so, like eve, I've to scroll through the social-media stuff to find anything about lungs.
Thing is, there's loads of social media platforms for those who want to post about pets & gardens - Facebook, Instagram, Tumblr etc etc - but only this ONE lung support site, the best in the world (& used all over the world) but it's losing its identity & purpose.
pergola• in reply to
I feel that this forum, as it is at the moment, works well for a lot of people. There is the opportunity to ask/comment on medical issues. But we do need light relief to talk about pets, gardens and the world about us. That is what suits a lot of people. I am sure that there are sites that will specialise in lung diseases only. It seems to trouble phone users .....dont know about that but perfectly fine for other people.
• in reply to
Good afternoon Hanne62,
I do not "do" social media. No mobile phone for me, or stuff like facebook etc. This is my only connection with others who have copd and I am more than grateful for the help and support I receive from my friends on here, whether it is medical or general chat and photographs and pictures of everyday life. It all goes to make us what we are, and a little kindness by giving pleasure goes a long way to lighten the times when breathing is problematic.
Enjoy your afternoon
knitter• in reply to
Hi Jennifer, just to say that the ' social' posts also help me during sleepless nights and early morning breathing panics....something else to think about as a diversion and it does help knowing others are awake too.
Pets and gardens have known health benefits .....it's good to share....
Hi
If you look at some of the other HU sites that tend to stick to the main theme, the recent post are 16 hrs and before that 2 months which could lead to a stagnant forum slowly disappearing.
By allowing such diversity it keeps the forum active, as mentioned there is a list of topics, plus when you click on a post of your interest, there is a list of related post to the right of the page, plus being British we are nosey and love a bit of gossip.
The story telling and humour helps to lift the spirits, which is a good thing.
• in reply tostone-UK
How many members does that site have tho stone-UK ? I don't think that would happen here. This one has 18,500 members but with respect there are possibly only about 20 who post several times a day on subjects which they could equally use a social media platform for. That's fine for them but what do all the others get out of it.. I fear it's one reason why so few new members post.
sassy59• in reply to
I'm not new Hanne and rarely post but do love to read and comment on all sorts of things. I don't do Facebook etc. Xxxx 😉🙄😀
I agree with stone I belong to a few HU sites and this is the only one that talks about other things. Witch I think is a good thing. I also am a member of a few closed FB sites and they don't just talk about health issues. As they say verity is the spice of life. Take care all xx
If was all health am sure could makes us feel neurotic .. I know have felt bit like that myself SO think a good mix can be good for you and your metal health.
And it takes doom and gloom away from our condition's I find WEL some of the time anyway
• in reply to
well said Jeff
I am guilty of indulging in "frivolity", especially gardens & animals both of which give me a lot of pleasure & stops me navel gazing about my health problems.
I have not been a member for long & joined initially to look for help/answers etc about my condition. I have found these but also found a community of delightful diversity. I actively look forward to certain people's posts & know that even if I feel a bit down something or somebody on here will cheer me up.
I suppose it is like everything in life, you cannot please all of the people all of the time.
I like the mix. It is good to smile or laugh at some of the jokes and animal photos! I need the variation to stop me feeling stressed and depressed about my illness.
Take care
Malinka
Though I don't post I enjoy reading about others, I feel that the social aspect of this forum is very important in coping with our daily lives, I like the banter that goes back and forth between members.
G'day Eve
Thank you for highlighting your thoughts about splitting chit-chat, humor and medical concerns. As mentioned earlier ...On the right hand side there is a section "Topics" in which one can search for medical info, but having a "social network" at times can be just as rewarding health wise.
Will (Australia)
Hello Eve
Looking at your past posts, where you have asked for advice or help with medical issue, you received many replies.
There is also the topic section which will take you straight to the subject you want to read about, and as each member is supposed to choose a relevant topic to post under, it couldn't be made easier.
Many people on here are on their own, with incurable illnesses....they would never get the same interaction with a social media site, as they get on here....we all know what they are going through, because we are all in the same boat. We understand each other and recognise when something just doesn't feel right.
You will also notice when you read the posts rather than scrolling through them, the members who post about various subjects, are some of the most supportive people on the site, and are always there to welcome new members, support them, and offer any advice they can.
Dr Google can give you all the medical facts you could possibly need.
This site gives you understanding, and hope
Velvet
Thanks velvet I have had lots of replies but I gather that I am on the wrong site.
Not really,
You have been a member for a long time, so you must have got something from here
Velvet
You're not on the wrong site, Eve. We're all different but we all share something which affects and changes our lives hugely, and that can be really hard to cope with, manage and deal with. That's why we're here. You don't need to be involved in gardens and kittens but you can help us with your experiences.
It's like a pudding trolley - chose what you want and what you like but if you had the lot you'd probably be a little unwell.
Sue xxx
Dear eve, please don't say that, is there anything in particular we can help you with. You are not on the wrong site.
We are all different, with different needs and interests ...with lung conditions in common.
This site offers support to all...all welcome....just take what you need.
Look after yourself and please keep posting and reading.
I think I have mainly written 'serious' posts but responded to more frivolous posts.
I am more than happy with mix. If something doesn't interest /appeal to me I just don't read it!
As others have mentioned this is a very active site whereas others I belong to often can go for hours or even day without a posting. I much prefer this site because I feel there is always someone there.
I like to read about so many topics on here. Takes my mind away from my lung problems. xx
Hi 👋 Eve, I suppose it boils down to want you really want to take from a forum like ours.
I believe our members are unique in that they don't totally focus on their conditions.🤒😷
We all have to live 24/7 with our conditions & all the problems they bring to us.
I find it so beneficial & lovely to be able to share the lives, hobbies, problems, pets, flowers 🌺 etc of our friends.
It's therapeutic to us to forget our problems even if only for a short time & this forum fits the bill entirely.😀
It's a great place for members who have nobody at home 🏡 & have little interaction with others. They can 'chat' to others & it feels like having a friend in your sitting room.
Long may it last & keep well everyone 🌷
Hi Eve I do like the diversity here but on the other hand do understand what Hanne is talking about, Some days we are swamped wih gardens and pets. Maybe thinking about this before you post is an answer? If there are lots of frivelous posts that day maybe hold off for a day or so? As with everything a balance is always needed. x
• in reply to
Yes, balance, that's what's lacking at times. If one person wants to post 6 cat or 6 dog photos in one day, or 6 pics of their garden, or 6 philosophical musings on life, why not join Facebook if you want to do that? Anyway that's just my opinion.
knitter• in reply to
Hanne and cal......what's the harm in someone posting a number of photos in one day......they obviously like to share the things that they love, and others might enjoy seeing them.
One persons idea of balance might not be another's ....would we stop someone posting a number of health questions in one day.
I just hope no one has been upset by thinking that they are not 'Allowed ' to post .
This is a supportive site as well as being informative, and support comes in many ways.
• in reply toknitter
Don't forget though knitter that this is primarily a lung site where other posts ie humerous, pets and gardens ec. are willingly allowed, not the oher way round. Sometimes it does seem the reverse I worry that so many other topics will put newbies off joining in.
I have posted things other than lung ones and do love reading others but not being swamped by them to the exent we are now. All I am saying is there seems to be a lack of balance here sometimes. I think there are very few totally against 'fun' posts but maybe some could go on more appropriate sites? Bev x
If I was a newbie coming on here now, the variety of posts would help me realise that life, as I know it, is not going to stop dead, after diagnosis.
It's encouraging to know that people can still garden, go on holiday or for the housebound, have satisfying hobbies. It lifts the spirits.
People soon know, that the good people on here will support them through the good and the bad times. I came here broken, but, I'm back on my feet thanks to this site and the knowledgeable and caring members.
I found a couple of the more serious sites, which was brilliant when I had wanted to get a 'feel' of life with lung disease but, I didn't stick with them because it was making me feel depressed, which waa detrimental to my mental attitude.
I do know some sites that have a lot of off topics posts and banter, can seem a bit clicky to newbies, but, that is why there is a choice of subject in the menu xx
" Hello to you Eve... And a warm welcome to you too.. BUT! For the amazing people on this Understanding Forum...with all their wide knowledge of trying to live with a terminal disease..Supporting each other..keeping each and everyone of us positive anytime of day or night. The comfort of just knowing that if your home alone..Feeling so scared that you can't breath. Feeling your breathing through wet socks stuffed in your mouth. Is the most scariest places to sit When alone.. To see others lifes events gives " speaking for myself" gives you the courage to live. That we maybe be struggling some days. But seeing and sharing how each and everyone of us live with this horrible disease..Doesn't End your life..seeing our success's whether via our proud gardening effort's..our pets.. It all helps to inspire us into believing that nothings impossible..Just Different is all. When I joined this site..I lived alone. So scared of my future with fears you couldn't imagine. I just wanted to end it all..But my GP suggested I join the British lung site.. And the day I did. My life turned around full circle. I'm very much alive in my heart and mind. My body is jus about coping. I got married a few weeks back to a girl I'd spoken to online for a few years.. Our common interests were. We are both Veterinary Surgeons." I'm now retired" Today we live a very happy life together.. and most of all..Grow old together.. Hand in hand into Our Future...And all at the age of 70..But!! For all the beautiful people with the kindest hearts ever.. The amazing knowledge of this horrible disease..My life would have been over.. There is no other lung site that can give the emotional comfort as The British Lung site can. End the day. Knowledge can only be learnt by those that live it.. A lot off our lives would be so sad so lonely and empty but for the support of others..sorry I've waffled on. But this site is more than a medical site..Its a life saver.....Megan.."
I think the mix makes this site so much better.Being able to post little bits or read about other people's lives while finding practically everything you want to know about our horrible illness is a relief beyond measure.
Noone has said the non-health posts are "offensive" or "selfish". All we're talking about is balance.
2 new members with COPD, who joined yesterday & posted health queries, received hardly any replies. One had 1 reply (which was from our moderator) and another got 2. That seems a shame.
I certainly did not intend to offend anyone and if I have, I apologise.
Nottobad• in reply to
Hi hanne62 I agree we should post non health posts. But I think you will find that the post you are referring to was not locked and that is probably the reason for only one reply. I think that is a shame
Hi Eve,
I understand your frustration but feel that the freindly interaction with all of the people here sharing stories and feelings makes this the best site for help. Sometimes a distraction from the endless discussion of what is wrong with us or how poorly we are feeling can a very good thing. If it were not for the great comments, jokes and good fellowship, this site would become pretty morbid. I've never met anyone here in person, altho I would love to, they feel like my close family. I sure hope they keep it up.
Hope you stay with us,
Bruce
I hope if you become really ill, Bruce, you feel that this is a place where you can safely come to share it with others without feeling you're being judged as being boring or morbid. Sue x
I actually am very ill and I appreciate the comradary from others in the same boat as me. Thinking only about how bad we feel kills our spirits so it't a good distraction. Especially from people in similar situations. As was pointed out to you, there are links to subjects on the right side of this site so you can read only what interests you. Since joining this site I Think I Have made many supporting friends who are helping me through tough times. I am very grateful for that help. If all I wanted was clinical sano jargon then I would find another site where they don't care how you're feeling but analize tests and give interpretaions of them. By the way, to my knowledge, this is all voluntary, so I don't have to be here.
I apologize for upsetting you, and I'm sorry you're really ill. I wasn't making a comment on my own behalf, and I know about the links to different subjects. However I do think there are people here who need to talk about how they feel and ask for help and support and that it's what the site is primarily for.Not exclusively. We're all different but share much in common - that's what makes this place special.
Be as well as you can be, Sue x
I am sorry you are so ill docwebb but I am glad you are getting the support you need here. No one is saying they only want 'clinical sano jargon' or for no one to care how you are feeling, but I worry sometimes that as the pets/gardens increases then the lung issues will only decrease and might put some newbies off joining, new people who desperately need the help from the site, as it doesn't seem 'serious enough'.
A good balance is needed with not a proliferation of one type of post (except health ones). That's all that has been said so please don't anyone misread it. x
Keeping connected is how support happens. Please all you lovely people keep posting your pets, your gardens, your birthday cakes, your jokes and stories, and yes your medical information. You are together with me in this lung disease thing and I need you.
Nancy (Colorado)
Hi Eve3066 , Haven't been on much recently. I just read this post and was surprised. I have tried many other forums and this is no doubt the best out there. Others have posts far and few in between. No matter how you're feeling, others will understand and give you support. Everyone will share the good and bad parts of your day with you. Need a laugh, feeling really mad.by yourself on your birthday, need some medical advice, had some bad news. Funny thing is, those people that bring a smile to our faces, are the first to reply to newcomers. I myself, feel it's a perfect mix on here. We're here for you, Eve. Always.😁 Ruby🌹
Agree with you Ruby, felt rubbish on Sunday (looks like it's a kidney infection and a flare-up, will be seeing a consultant on Saturday so get it sorted out then). The thing was I had a much bigger worry that I just needed to talk/write about if only to get it off my chest which is nothing to do with my health issues other than stressing my out.
Could not write about it on Facebook as suggested as a family we are all linked and I didn't want to get members of my family worried about me worrying about my lovely grandson. Hubby is still grieving over his brother passing away and starts to get panicky I don't have many friends these days, so I am afraid you lot are lumbered with me.
But I on Sunday night I felt it would be wrong to put my thoughts down as it might be considered not appropriate for site, this is the first time I felt shut out.
I can't have furry/feathered friends because of asthma, I get chronic hay fever which lets any gardening topic, can't walk very far and holidays would be difficult but I understand what joy our animal friends are, how if we manage to mow the lawn how good if feels to over come our difficulties and I love reading about people's journeys. If I am having a bad eye day I limit my post reading to newbies and peeps in difficulty.
This is a site with a big heart and open arms, can we keep it that way. I don't want to upset anyone, let's all get on together because the one thing we can agree on we all have rotten lungs.
Sue
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