Can we stop all these postings about not feeling well, what to do etc. The advice will always be the same and gets rather boring!
This isn't a site for medical advice so cant help! If need advice over what to do look at the all about asthma section.
Plee: Can we stop all these postings... - Asthma Community ...
Plee
62 Replies
•
Well said. Guilty as charged. Sometimes we are so caught up in feeling down and fed up, that we forget what the various talking point headings are. They have become a bit mixed up recently. Lets try unravelling that and post under correct headings again.
That we cant give medical advice or anything even vaguely approaching it, is sensible as most of us are not health professionals, cannot see the person and would break forum rules. Some people just dont get that, unfortunately. Meanwhile, advice on how we have coped with this and that to do with asthma is excellent for newbies and old stagers and doesnt cross the line.
Someone started an Off-Topic thread titled - Actually, I feel quite good today. Perhaps we should have a Off-Topic thread - Having a down day.
PS Plea from me. Lets keep Off-Topic for just that. Non-asthma stuff.
True enough & well said. Tis difficult for some people when feeling unwell. Perhaps like other forums each section could have a sticky from the administrators that always stay at the top to remind people.
I must admit I am known for not having any sympathy, but I dont expect any in return. Most days are bad days and part of living with a condition is dealing with it and not moaning left right and center. I am also a beliver in there is always someone worse off so hearing people moaning about little things yes are annoying but look at the big picture, sure there is someone sitting in costa struggling when your koaning about a little petty cough! Live a day thinking of someone else.... always someone worse off!!!
I was just about to say this! I thought that was what camping was for! Good day/ bad days etc its all a bit pointless and clutters up the board. If you want to share your every asthma symptom use camping, more of a genral chit chat area. If we all posted when we were having a good or bad day then the boards would be a tad boring. Its not a competition we all have asthma of varying degrees. Most questions can be answered using the search box too.
Clare
Hi Clare,
When you say 'camping', do you mean real camping or is it pc jargon for something? Sorry, this is a serious question cos i don't do social websites etc except for this one - feel silly asking...
Jac xx
Its a post that everyone used to post on as like a genral chit chat area but seems to have disappered, will find it and bump it up.
Ah, now i know what you mean, thanks 
jc glad u asked i was starting to pack my over night bag and head to the new forest!! all gd now. glad i wasnt the only one who was lost!!
Sorry lol I forget some peeps are quite new 
Hehe, thank you chell, glad i'm not the only one!! New Forest is lush!! Last place i went REAL camping xx
I was confused too. I saw the thread but was wondering whether it was 'real' camping or not. But then I've been meaning to ask for ages whether COSTA is an acronym - I got that impression because the Costa thread has it in caps.
I'm not a 'real' camping kind of person usually. Any I've done has always been directly on the ground and while I don't think I'm especially skinny, I'm always amazed at how much my bones seem to stick out when I sleep on the floor. Plus I swear rocks just grow overnight underneath me.
I am obviously extremely pampered and would never make it through boot camp or similar - but am hoping I'll never need to!
Hello, I was one of the first ones to use ' Costa' as in Costa Del NHS........... a nick name for Hospital! eg pinched from Costa Del Sol......
ah right! I knew it was hospital, saw people using it that way but couldn't work out if it had started out as a medical acronym (eg for some part of the hospital) and then you and others started using it like Costa del Sol. All is now clear, thanks! I think I will stick to the Spanish version if I can.
Have to say ever since I started coming on here regularly I've never been able to look at a Costa Coffee in quite the same way
Its worse now costa is in costa!!
Bizkid good on you for saying something, that I have been feeling for so long. Used to call in most days, but it has just got a tad repetitive. Of course people are looking for advice and support, but please in the first instance can people try searching this forum first for the answer. I have lost count of the amount of times I have written the same answers to people. The board needs more positive pointers and stories otherwise I fear many long standing and valued posters will disappear into cyber space. Finally Bizkid don't be afraid of a little sympathy if offered to you, most people who offer it are genuine, I don't like anyone feeling sorry for me, but it is nice to know there are people out there who care.
To the newbies: Camping is for general chit chat post. Costa is a place to let valued friends know about those who are ill and are not always to relay information directly.
We do have a Costa coffee place franchise in my local hospital but even better, an M&S food!
Bizkid....... I agree with your original posting. X
Bravo Bizkid!
I had pretty much stopped coming on the site for this very reason.....that and the apparent competition to see who has the most severe asthma which I REALLY don't get!
Glad to see this up - hoping it will make a difference
For all newbies....when I was new I didn't understand costa either - little green men in big yellow spaceship is ambulance people in their ambulance vehicle.....that confused me when I was new too
i am jealous. current hosp has costa but no m n s food!! thats just unfair. i am totally going to disregard any job oppertunities in the future unless hosp has a costa and m n s. with regards to hosp for treatment well my one specification there is that they sell slush puppies!! random fact. i crave them when sick!! on that note signing out!! chell.xx
I have to say I am far more jealous of the m n s food. Local hosp has costa which was great for 5 months of visiting Gran with broken hip and my hosp has a burger king! Great!
NickyNoo may be we need to ask the managers at Southampton to get an M & S food store in pronto... would be nice to have some choice and decent food for a change...
I love the idea of hospitals having an m&S food I bet they must make a fortune. When I used to work at NWP hospital they had a greengrocers which was fantastic. They used to sell a pound of cherries for two pound (sadly I often used to eat the whole pound before I got home)!
My local hospital has independent coffee shop in the entrance hall - it sells the most lovely tea and cakes, sandwiches, jacket potatoes etc. People in town even go there to get afternoon tea it is very reasonably priced and even has a little garden you can sit in. I have been a couple of times when I ahve had to stay in but am feeling better. I think I am very lucky having a small acute hospital which is friendly and very local to me.
Real coffee shops or M&S in Costa 
nowhere near me, would love that.
It has got a bit quiet on here Feejay and Katina, agree what you say.
Clare22, have bumped up camping thread, it's here on general.
I will give sympathy when it is due, but as someone who has been there and got the tee on allot of whats going on I struggle to see sometimes the truth in stories (I have also worked for Ambulance service and ED for many years) and the whole GP wont do anything. I want to slap people and say I much rather swap places!!!!
Getting on my high horse!!
Loved being in Soton when was able to walk but more ( they told me to walk around ward more so walked to Burger King.... don't like the flower shop or the Solicitors though)
Malawi, should definitely petition them to remove BK and put in M and S. Not sure what thread was on about smokers but it was also Southampton Gen where someone took a mega phone out once to remind smokers that it is not allowed on hosp site and where I think the sprinklers should be put in the awning over the entrance!
Bizkid, I really could not believe it when I first went here and was told to walk to BK and turn right.
Bizkid having worked in the Ambulance Service and ED bet you could share some real shockers and funny stories with us (Obviously not breaching confidentiality of course).
Ohhhh I do have a few manly involving stupidity of some people!!!
I went to an asthmatic once before the smoking ban and he wasn't that ill (was city center so easier just to be a taxi to ED!) said I hadn't had an attack for a while so wanted to see if I was still asthmatic so went to the pub and had a fair few ciggies to test it out
Also remember a child telling me this whole story about how he had been riding his bike and a bird came down a bite his finger
Had plenty of objects in places they shouldn't be thing the weirdest was a toy car in the vagina
I delivered 3 babies though.. Unfortunatly had the leave the worls of NHS about a year ago after along struggle with asthma
i dont even want to know why that toy car was there
I didnt want to ask..... maybe took a wrong turn!
i have heard of some strange things going into a&e. I watch that bessare er and then watching britans got talent on saturday night and the circus of horrors went on and low and behold the dwarf who is in it was on bessare er after putting a hover hose on his man parts and it got stuck my mum couldnt move for laughing
I can never understand what people are trying to achieve when sticking odd items in certain orifices.
The recent Junior Doc series on BBC 3 where a man claimed he fell on a toilet brush, oh please! And Bizarre ER, the confessional where a Doc told the story of a woman who stuck a Donny Osmond photo up her vagina, my god these people need to be sent the bill for the treatment they require from the NHS after inflicting such bizarre things on themselves.
Write a book on it Bizkid, plenty of people read that kind of thing!
my mum me and brothers would read it. I have had strange injurys happen to me but not anything near them kind of things. why would you do that to your self
Fom my time working in a hospital one of my friends was a theatre nurse and aparently one particular patient without going into to much detail had a tatoo somewhere sensitive saying ""Please stay off the grass"" with appropriate green hair colour. The surgeon had a sense of humour and with a marker pen wrote ""Sorry had to mow the grass"" above the tatoo. I am assuming this was wiped off before patient came to...
thats a great one. Still it would be funny if it was still on when they woke up
Well I've been around for at least 3 years, and I just found out today what the camping thread is and when I asked what the costa thread was I got a rather rude response as I offended someone without meaning to obviously. Also I'm somewhat confused as someone who was treated for asthma for 7 years (and it turns out I don't have it), and with getting rediagnosed and undiagnosed about 5 times....sometimes even though it is obvious you need to do something, it is rather confusing and complicated especially when your doctors can't get their act together and are giving you bad advice. Which I would think it would make sense to vent on an asthma board because I certainly don't talk about this in the rest of my life. At the same time I do agree that it doesn't make sense to ""compete"" for worst asthma (because please who wants that!), and we can't give medical advice of course.
Bee
Just to respond to a suggestion made further down: Unfortunately the message board software does not have to capability to allow ""sticky"" threads, although I agree it's a good idea!
As you were...
CathBear
(Moderator)
I'm lucky enough to have relatively mild asthma for most of the time, and have not had real problems in the time I've been visiting the forum. I've always thought that the posts from people having a bad time are a bit of a safety valve to relieve some of the tension that gets the upper hand when symptoms keep getting worse.
Maybe there should be a thread where someone who's having a bad time could post so that friends could PM them for a quiet chat. Rules could be that only you would only post your name and that responses woud only be by personal message and not via the message board.
Having said that, I've only been around since February so it's quite possible that something similar has already been tried and found not to be very satisfactory.
Personally I don't have an issue with fellow-sufferers talking about their asthma in detail. If I find anything boring or repetitive I skim through it. Lots of topics appear again and again which is bound to happen with so many users coming and going. Issues may be repetitive to some, but they are obviously new to others. Every one is different and some users may be quite vulnerable or lonely and the forum may be their only outlet.
Like others I do get concerned when people post asking for urgent advice, this is against the forum rules. There is also masses of very useful information in the section 'All About Asthma' (as Bizkid says in her opening post). If in doubt or worried, call a doctor.
I suspect I don't make enough use of the search box. I have also been known to post the odd 'not feeling great, any advice?' kind of question, but I would never do it if I felt it was urgent - the one time I did feel it might be urgent (it wasn't in the end) I rang NHS Direct. Also, the 'who is most severe?' competition - agree that it's annoying and almost more offputting re posting if you're nowhere near the 'bad' end but just want some advice.
I tend to post when things aren't urgent and I'm not sure if they're just par for the course and something I'll have to put up with or if it's worth going and harassing my GP again while waiting for the consultant. Plus I do, I admit, like to moan a little and share symptoms, because even if I turn out not to have asthma I seem to have most of the same symptoms and don't like to talk about it with friends/family too much (I really don't like doing it in person). I'll admit it, I like to rant even when I have less to rant about than some - but I also encourage others to rant lol
Also I like to ramble, sorry...
Philomela,
I love your rambles so don't stop now!!! And it has helped me hugely having another 'maybe, maybe not asthma' person on here.
I think it is the urgent messages and the sense of competition that make me uncomfortable reading some topics. And with the competition, for me comes doubt of truthfulness.
I think this is a really good subject Bizkid and helps us all bring our thoughts and opinions into the open and possibly help us connect more.
I love the variety of questions we all have too and the vast amount of experience and knowledge people have.
Jac xxx
Just my thoughts.
Have been thinking about this alot recently and have thought about replying to this post for a while - sometimes it is important for people to be able to get out what has happened or is happening to them. It can be a very, frightening and issolating experience no matter how severe or mild asthma is. Some people are not lucky enough to have people in the ""real"" world that they feel that they are able to talk about this sort of thing to and to reach out to if they are having a rough time. I do agree that there should not be urgent appeals for medical advice as these cause distress and worry, but I feel that should be somewhere that people can off load. I am not sure if am articulating what I really mean...but not sure how else to express it.
I do understand that some people need to feel the need to off load and dont mind, what mainly on about is having 3 topics on the go all started at the same time over the same issues, maybe have a rant thread.
I do know asthma can be scary, but dont like this compition.I feel its putting the true brittles down making it sound less severe when you never would want to be a true brittle. Walking one minute on the floor not breathing the next with no warning its about as scary as you can get!
very true BizKid, being a true brittle is no fun whatsoever and makes planning even the simplest of trips/routines etc a nightmare!
Not that I have any enemies but if I did I would not wish this on the worst of them!
Snowy
everyones asthma is different but sometimes you cant talk to people in your family as they dont understand. I went from being mild to out of control in a few weeks asthma can change quickly and sometimes you feel down or something happens and you dont know what to do you just want help. We all know everyone is different. Everyone is guilty of putting rants on here or even asking for advise from people who understand and if your new to asthma not all asthma nurses and drs explain everything and we get unsure of things
I don't think it's for us as forum users to decide who's a 'true brittle' asthmatic that's for medical experts only. Asthma is a scary disease wether brittle, servere, mild or moderate just as many mild asthmatics die as severe asthma pts. What's important is that people feel free to express themselves without people complaining or attacking them in anyway.
Honey, I am with you on this one. When my asthma was diagnosed as severe I had nowhere to turn, nobody with a similar illness to compare notes with & I was scared. This forum gave me something I could not find anywhere else & I apologise if I have ever posted with a view to getting advice or for needing to offload about my asthma. Where else could I go, who else would understand & give me that support I so desperately needed as my life changed over-night. People will give & take whatever they need from these sort of forums & alsorts of people will post. Please dont be put off but remember to respect the rules & others feelings. Thanks for reading.
S.Mama
Ranting is fine if you need to off load when the going gets tough, and it really doesn't matter whether you are a mild sufferer or a brittle. At the end of the day it is how it effects you the sufferer, we are all different. It is not for me or anyone else for that matter to say that a mild warrants less support that a brittle. But also I do feel at times that some really milk it, I will probably be slammed for saying this, and without naming names some long term posters on this site have really had enough and use other social net working sites as a means to stay in touch with each other and continue the support and banter we all once enjoyed on this message board. For the new people joining this message board is is a true loss that some older members just don't bother with this board very much any more. These people were amazing, and I am grateful to still be in touch with them, but I am also sad that many newbies will never get to know them.
Everyones asthma is there own and I dont think one persons asthma is the same as the next and the way they deal with their asthma is very individual...whether you have brittle asthma or mild asthma it can be terrifying to the individual and this board is here to help and support people individually and together.
I dont think you can ask people to stop putting individual posts up as they are entitled to do it as it is their own personal experience that people are asking for help on and not tagging onto the back of someone elses as the information they need may be very different.
It is not a case of competition but a severe attack to one person may be considered a mild attack to another and vice versa as everyone is unique and each asthma attack is unique. We all have off days where we jsut want to rant and moan and get things off our chest and I have found over the years this has been a great place to pop a wee post up and people offer support and make you feel less alone. By doing this through an individual thread in a way makes you feel less alone as people are taking the time to comment on your post and thinking if you.
I know I dont post on here often as I am snowed under at the minute and have a lot of issues going on just now but do think of people when they are having a rough time.
The board does get busy with posts but you dont need to read all the posts if you dont want to just the ones you want to contribute to.
I agree with a lot of what has been said, in particular about all the competition to be the worst off of all. At the end of the day saying someone is or isn't a ""True Brittle"" is just going to wind everyone up and cause problems. It is not up to us to diagnose it, it is our Doctor's job.
Now I agree that constant complaints about how ill we all feel can be a bit depressing, but at the end of the day, we all need to support each other whether we are mild, moderate or even severe and brittle. I have noticed the term ""True Brittle"" has been coming up a lot lately and its something that I don't really agree with. I mean everyone's asthma is his or her own and thats just the way things are.
Just my thoughts
I find the term bittle chucked around to much between GP's etc only a consultant can say you are brittle.... I think the word brittle asthma should be saved for the type 2/type 1 and the fragile etc for people whos asthma is unstable...
I do understand that some people need to feel the need to say Ive been feeling ill, and I dont mind but when its the same message over and over, I feel it could be the forum just needs a place for feeling ill messages.
I must admit when first wrote this was in hospital with my asthma and was getting fed up with it all. Yes I am Severe and Diffcult so allot of the time I do feel ill, but when your used to it, when you live with it don't see the little annoying things about illness. Take coughing for example a day dosn' go by without my coughing and I dont notice, I just notice when there is a change.
I realy do feel this compition, my asthma is worse than yours, Im on more inhalers than you, Ive been sicker than you should stop. And feel that people shouldn't feel that have to excerate symtomps to get support they need.
bizkid.....
as brittle seems to be tossed about so much...you are diagnosed with brittle asthma once you have been thorugh a difficult asthma protocol...drs will always use the term but you seem to get very hung up on who is using it etc. does it matter what people say their asthma is...it is still asthma after all and some people just lie along the spectrum of it....it is still asthma and still the same diseas process etc jsut different severities.
if you dont want all these posts about people feeling ill then dont read them or dont use the board....
i do know that olive.... but I think with it the Dr Googleness in some people will cause panic not everyone is calm about it. I do know some doctors dont respect the term brittle as it is being used to much.
I dont read the not feeling well but when happens allot it hides the decent posts in with them.
Like I said before I dont care people posting but they are starting new topics when there is aready one there! recycling!
I was just saying my personal views.... I know to me I just have asthma I dont care whatever term is used to decribe me, its my asthma but know it is important to some and important to say to ED Dr's when you are Brittle Type 1/2 as can define the treatment options used I have found
Bizkid i think your being a bit of a hypocrite, you 'dont care whatever term is used to decribe me' yet you are constantly saying you are a 'true severe' and undermining other peoples diagnosis's
If other people have brittle asthma, your not one to judge you don't know what they've been through. If people want to post about not feeling well then that's fine. It's often difficult to talk about these things to people in our everyday lives and this message board is meant as support, and for a place to people to vent their true feelings. If you don't like it then to be quite honest don't bother looking at it. I know of a whole host of people who are annoyed and have been upset by your replies.
For expressing my opion I now have become a view of some evil person, but there has been people upset on things said before this and will carry on.
Yes might be a bit of a hyocrite, I dont care what people thing of my opionion its mine and Im allowed to view it, Unfortunatl not everyone has the same views and I am opionionated. I have not once said your not brittle or not severe. yes I might offer alternitives that isn't drugs or introduce ideas that not all symtoms are asthma. But I shouldn't have to feel like I have to give reasons behind my thoughts.
i have had a multitud of emails from people saying thank you for having balls enough to say something. I am not afraid of who I upset, I havent once said no-one should not post completely about not feeling well if they feel have to tell people on here then thats fine, I know I wouldn't.
Bizkid, have pm you. This has really seemed to hit a nerve with a lot of people. There is always going to be different experiences and ways of coping amongst all of us but there has been some unnecessary duplication e.g. pred and postings on old threads which does clog things up.
Katina, have said before it's been quiet on here and defo thought a lot of people missing. On facebook too if people want to pm me
TJ I have been a member here since it was the old boards and there are so many people missing who used to be about. It is really sad. Some of the members who are sadly no longer with us would be spinning if they knew how it had all turned out.
the whole board has a different attitude. friendship were formed easily as everyone had the same view. they focused on what they could do and how they can help people not on what they cant do and how many medications they took. it was accepted that people were different and everyone would have different stuff etc. it was a great place to be a member and i got a lot of support from the older members but now feel that if i were to post about not feeling well i would get idiotic posts back that I should go to hospital etc. I know that but sometimes you just want someone to let you know its ok and not want a strong of people telling you not too post here and get help. Sometimes you feel bad but dont need help just want some reassurance and this is what the board used to give but people abused that and now you dont dare risk it.
it is really sad to see how this has turned out and I am really questioning my input into these borads. I have a lot to offer after having a rough seven years and really learning a lot which I could offer to other people but due to a few rogue members I do not think I want to stay around. It is very sad what it has come to.
RIGHT THEN EVERYONE, I THINK WE HAVE ALL MADE OUR FEELINGS PRETTY MUCH KNOWN, WHETHER IT IS FOR OR AGAINST. LETS GIVE THIS THREAD AN END NOW, MOVE ON, TAKING NOTE OF WHAT EVERYONE HAS SAID. I THINK IF WE CARRY ON, SOMEONE IS GOING TO GET IN A RIGHT TIZZY, ITS NOT WORTH IT. EVERYONE WILL HAVE DIFFERENT FEELINGS ON THE MATTER, AND WHILST I PERSONALLY SUPPORT BIZKID IN HER PLEA, I DON'T BELIEVE THAT AT ANY TIME THERE WAS ANY MALICIOUS INTENDED TOWARDS ONE OR CERTAIN PERSONS. AFTER ALL SHE LIKE ALL OF US AS THE RIGHT TO EXPRESS PERSONAL OPINIONS.
Bizkid I have stopped using this board for the very reason that people seem to feel the need to be in competition with each other but if people want to write about how they are feeling - let them, you don't have to read it and also............in every single reply on this topic you have mentioned how unwell you are and how you suffer everyday so you, therefore are guilty of trying to 'be the sickest' Pot calling the kettle black comes to mind!!!!!!!!!!!!!!!!!!!!!!!!!
I was using myself as an example, I dont go on every day doing the Im feeling sick, Im in costa.
Anyway funny story earlier on I said about funny jobs thought of another one.... A boy and a girl who insisted they werent a couple, super glued there hands together like they were holding hands and mean both sets, there were stuck for 4 hours before a mum came home to take them to hospital as they couldn't hold onto the phone or anything!
sorry but after readin through the thread and getting angry, and at the same time understanding some points of view, i thought it was time to reply to the thread now.
in relation to saying when your in costa on the 'COSTA' section, isnt that the purpose of the section on the general forum part?? or am i mistaken..
my understanding was that you post on there when u r in costa, or just come out so that you can comfort each other, support each other as thats when users on here need it most isnt it?
or is it not?
also i agree with katine, lets just put an end to this debate, before it gets out of hand!
x x
Moderator Message
Right, I'm going to round this up and ask that it's put to bed now, please.
It must be remembered that these boards are here for all, from the mildest to the most severe asthmatics, and as always, we ask for tolerance from everyone, wherever you might be on the spectrum. It can sometimes be difficult to remember what it was like when you were first diagnosed, or coming to grips with asthma, when you've been living with it for so long; similarly, it can difficult for mild or ""new"" asthmatics to fully appreciate how disabling asthma can be at the other end of the spectrum. As a community, I would hope we can see other points of view and support all people, wherever they might be on their journey.
It is important to recall, as per my recent post, though, that this is not a place for emergency medical advice. Please also remember that, even if you are posting just to sound off about how bad things are, that these kind of posts (if detailed, as a lot of them are) can be distressing and frightening. Bear this in mind when posting - it's not to say that you can't post, but please consider carefully the amount of detail you might be including.
This community has changed a lot over the years, it is true; members will come and go, sometimes staying for weeks, some for months and some for years, just as long as they need, perhaps until they find some other source of support, or perhaps until they no longer need support. Let's make it a warm and supportive environment for as long as everyone needs it.
Thanks,
CathBear
(Moderator)
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