Just sat through reading the posts regarding lyndierose,And it has made me quite sad,to realize that on a site,where I have found lots of advice and tips regarding our health probelms with copd,that there is still people willing to take the vuneable people down.It is a form of bullying,we may not always agree with what we read,but everybody has a right to speak their mind.I have also gathered that along with our breathing probelms,there is a great deal of saddness and depression,that tags along side it,for some it helps to vent it to a world,that understands,and if just 1 person can help in that moment of need,then the world is a kinder place for it.
I my self,have had shocking health since 17 witth brittle asthma,and know how scared i was at the thought of yet another attack,and when acute,the thought of leaving my children behind,i so wish i had this site to talk too then.my brother and 1 of my friends died in this way
Some of you may remember my first blog not too long ago 'old lung new condition',as i was newly diagnosed with copd,which scared the pants off me to be truthful
,as i thought death was just around the corner,you all taught me that this is not the case,and although i still am fearful too an extent,as i am already on top meds for the brittle asthma,i know that once i have accepted this set back i will cope.
all i ever wanted was to see my two children grow and i got to see my first born marry august,but now i want too see my grandchildren grow too.
sorry forthe rant,but we all need to be here for everyoone,who know it may be me next who's crying out.xxx
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poeticlady
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This is not a rant, it is the voice of sanity. I agree with all you have said. We all need to report the bullies, trolls, call them what you will, because this site and the support we offer each other is far too important to let stupid people spoil it.
Auntymary,good evening,I agree,everyone should report bullying,I have always been on the side of the 'under dog' so too speak,there is far to much nastiness in this world,its time people showed compassion for each other,even a healthy person needs a dose of that once in a while,let alone us wrecks ha ha xx
here here, it's both unnerving and worrying, and not knowing who is who and who is genuine is spoiling it for the ones that are genuine and need the help and advice.
Yes it is,but generally most people are honest about their need to be here,and usually you can pick nit the common and not so common medical probelms,my motto is the same as directions in the car 'if in oubtt go around the roundabout' ha ha ,
My voice and thoughts are the same. I am sick and tired of people who get their kicks from upsetting those who are genuinely ill.
I agree with you Zoee, My thought are unchanged that is why I only look in occasionally & very rarely post, its a shame but as we know it happened before on the old BLF Forum.. My motto is still ignore & report.
you are right poeticlady. I have suffered for years with one thing or another and havent really had anyone to talk to who understands. I used to talk to my mum, but i do not have her to talk to no more. Watching her pass away with severe pneumonia, scares me as to what i may have to go through, which hopefully wont be a long long time yet, i had my daughters when this happened, but they couldnt stay the whole time and i was alone. I have to watch what i say to my daughters as the passing of my mum is still fresh in their minds and i know that they are scared of losing me with how i am. When my new reults came through last week that i have got a fair bit worse, i was numb then i tears as i realised how alone i was, how i didnt have anyone to talk to no more over my results. A few months ago, i would have walked in the house, picked hold of the phone and dialled my mum's number. It is time, ppl gave support and consideration on these sites to the ppl who genuinely come on here to vent, to talk, to say how scared they are, how happy, how down, however they are feeling, the others need to stay away. I suffer with anxiety and depression and the more hassle there is or having no one to talk to can trigger it off, ppl need these sites. I get days or weeks when i dont feel like talking to anyone because of the illness, but having friends on sites like these, who will talk to you when you havent felt like talking in a long period of time and will treat you as though you were only talking the day previous is what everyone needs. xx
so sorry to hear about your mum,i totally understand how you have to watch what you say around your daughters,i feel i have to protect my son and daughter also,they have already seen so much ,so this site is very very much needed.plus without sounding bad,i dont think people who have not suffered a lung condition,can fully understand the toll it takes,i can say this, as my mum was a asthma sufferer, i watched her from a very young age,and can remember thinking when she was in bed again with her bad breathing she'll be ok soon,until it happened to me at 17 and i was fighting for my life,then i got it .take care x
Hi Poeticlady and San15. I've been to bed once - can't sleep so thought I 'd have a look at the site to see what's going on.
Poeticlady , I don't believe you're ranting. You're doing what the site was intended for - looking for support. Your two letters (San15 ) have brought home what the site is all about - it's the reason I joined for support and empathy. The recent argument, squabbling - call it what you want has taken away some of the true and caring spirit of the site. We can hear this sort of nonsense any day of the week at work or in the local supermarket. I am sure I am not alone in admitting that I use the blog as it takes away some of the fear about the future. I take comfort in the fact that people are still laughing and crying, but mostly also living full and interesting lives.
I questioned the whereabouts of a 'bogger' I missed and had many replies but I think that question added to the ensuing chaos! Now ,and I am sticking my neck out here, perhaps we should all let things take their own course and return the site to the place of common sense and safety - the reason that many of us joined for. If I were new to the site this week I very much doubt whether I would have stayed.
I feel the same way you do about the depression and anxiety - it's a nasty condition and add that to the COPD and life sometimes seems like an up hill struggle. I have my highs and lows and I hope I am not alone when I say that I dearly hope that the site may now return to it original ethos.
Sorry for MY rant poeticlady, but its been bugging me all day. Take care both of you xx
Ha ha terri-rose ,not a rant,a breath of common sense,i agree,everyone go back to basic,s,cos i think that is what is needed now,time out and deep breathe in 'well as deep as the old lungs will allow'.hope you manage some sleep time ,bye for now x
Oh my goodness!! I have just re read my post and what I should have written was BLOGGER and not BOGGER! A 'bogger' ??? - what an imagine that conjures up!! ha, ha. I am only grateful I didn't put a U instead of a O in bogger or I might have been banned too!!! You are obviously all far too polite to tell me my mistake x x
Yes, there are some idiots about and they get their kicks from seeing how upset they make people. It's happened to me, and it's happened more recently to lyndierose. I've heard from Rose and she is now taking a back seat whilst talking to the site team about what to do. She's OK and I guess she will appreciate the concern being shown.
Ideally we should all ignore the antics of the idiots and simply report the inappropriate messages if we see them, that way the site team can sort it out and we're all able to carry on with whatever we do on the site.
I may not be at my best today, but I've popped back on to catch up on a few things before I try going to bed. This was the first topic I read and felt I should respond.
I do chat via PM a few people on here and am happy to do so, sometimes it's not easy to talk about things in an open forum. Perhaps, like the pen-friends scheme, more of us could help out those who may not have someone else to talk to.
I know I don't at times. My wife works funny hours and often goes to bed quite early to be up for work the morning after. She's been off today so has been talking with me about the issues I had, although it's not solved anything. We spoke about having a day out somewhere, times are hard right now and we can't afford it, but we need to, or we'll crack up eventually!
I'm usually around and I like to help where I can. I'm not saying to forget Rose, she will no doubt read this, and she will be back when she's ready. What we need to forget is the hassle, it's been dealt with, the guy who pestered has lost his account. We should all know now what to do if someone like him comes back...
What concerns me the most is when its reported and nothing is done, or at least there is no evidence to show. An ongoing situation where the idiot trouble makers continue to roam among us and repeatedly make new accounts. Its really hard to stay around under these circumstances.
Yes it is,but never let the bullies win Zoee, unfortunetly,cyper space is not fool proof,and sad too say,in every part of life,there will be the odd few,trying to upset folk,( my guess is because they are un-happy with their lot ) We have to stick together on this one,lets face it,we certainly have enough mucus between us,to form a strong glue ha ha x
The 'offender' vanished, their account was deleted and all their posts removed. I've not seen anything to suggest that the person involved opened a new account and continued to cause problems.
I do keep an eye on these things and was in touch with lyndirose yesterday evening to find out what she was doing.
There are some site improvements on the way, I don't know how long it will be before we see them or just what will be done. Some suggestions were made to the site team on how to deal with offending messages, I'm waiting to see what they come up with. The moderators are all BLF staff I'm told, the site team don't act on anything directly. That means there's only supervision when someone from BLF is on here. I know a couple of BLF people have been on during the evening or at weekend, but it's the weekends that seem to be most vulnerable.
In the meantime, we need to ignore the idiots and continue to click 'report', then let the moderators do their stuff when they are available. It was suggested that 'they' allow a couple of trusted/regular users have limited powers to suspend a message or account and let them review that when they can.
If it happens to you, just remember that the 'report' option is just above the first line of a message. That flags it for moderator action and you can add a comment. Using the feedback button sends a message to the site team, but is not tagged to a particular message so you would need to tell them the topic and/or other details for them to identify the problem.
just logged on Gordon,and I think you were one of the first persons i 'Spoke too' I found you very informative,and funny.Like I said on my blog,I came to this site for help and reassurance,which i got,and i thank-you and everyone else,who took time out to answer my fears .so lets hope everyone can draw a line under this episode,and remember to report,not react,if you feel someone is invading your space,so we can all get back to the friendly site,it was when i first blogged in august.
Thank you poeticlady and terri, it is not a rant. I cant sleep again tonight, although I am shattered. Yes everyone is here to help each other. Yes, depression is a hard illness to cope with on its own. Everyone on here is at different stage off illness or have a similar type of illness. I only have my phildren, no friends, no family, no partner, no one, these sites are valuable to some people, I was on here every day a few months back then took a break. I hope you get your day away gordon, it will do you good. I dont get to go our except school runs, shops, havent had a holiday this year, looking forward to family holiday next year, with my daughters, their fiances, my grandson and grandaughter who is due jan x
Morning San15,Yes depression is hard to deal with,and made worse if you feel isolated,that is why sites like this is so important,please don,t let the bullies win .I will talk to youu ,if ever i can help xx
Completely agree with you all regarding this situation.. Some people are crying out and others have made the situation harder.. Which is so very Wrong.
She is a lovely lovely person going through a horrid time and needs support... Well I for one am here if needed we have to help one another let's face it families don't always understand...
Well those that have them.. mine told me to get a grip as to quote " Looked like I was about to go step out in front of a bus" arghhh
After being told ,
I may now realistically only have 12 months left to live as they cannot control the constant exacerbations
Whatever happens happens that is life, But while I am here regardless of whether I feel rubbish I would never turn my back on anyone who needs to talk or support !
Aligoddard,I was so shocked too read your prediction on your illness,but you never know,your exacerbations,may ease,I know my acute asthma attacks did,although i had to make a pact between the devil and the deep blue sea,and take 40mg steriods every day while well,which has caused numerous probelms,but i'm still here.Its the copd i have to get my head around now
I was in a serious house fire a few years back, have significant lung damage, scaring by the looks that coupled with the chronic asthma, heart and other things, I have seen so many docs had so many tests scans etc etc they have admitted they don't know what to do to keep me out of resus
but each time It appears to get much worse and now affecting other organs when I do go into Respiratory failure every 2 - 3 weeks..
It does get me down and all the meds have damaged my tum so now that's another problem arrghhhh
have another infection and some bug at min and know the pattern just preying don't end up back in hate going at the time, My life is a mess, my poor kids are traumatized now the school/college are wanting them to have counseling
Can't be easy for a 9 year old seing her mum being carted off blue lights and sirens going and total panic poor kids... Happened twice in 1 week
So for now am just hoping all these meds kick in quickly so can stay home and have a decent cuppa hehe
All stay well xxxxxxxxxxxx
Ps I love the people have met here and never once have I had any problems with anyone,
You Are ALL a Delight..
Hugs
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Hi Ali & firstly sorry to hear all your troubles, you seem to be lurching from one health crisis to another yet still you're on here supporting others, bless you. Refuse to think of that "12 months" stuff, keep fighting like you are and prove it wrong. There are new treatments coming on all the time, have a look at clinicaltrials.gov Take every day as it comes and keep on keeping on, you're a very tough woman even tho you must feel dreadful much of the time.
Just to say, do take up the offer of counselling for your kids. My daughter was 9 or 10 when I was very ill, often carted off in ambulance, and she certainly was traumatised. She told me later she never knew whether I would die or come home again. Her anxiety resulted in a form of OCD and she became very withdrawn. We weren't offered counselling for her but I wish we had been! However she is in her 20's now and has paid for therapy herself which has made a huge difference to her anxiety (which extrapolated into other areas of her life as well as about me) so she's now very happy, calm and enjoying life. I'd go for it with your kids asap if I were you.
lots of love
FF x
• in reply to
Aww I agree with you sweetie and I have had my meltdowns and now think you know what I am still here now and love the kids far to much to give in my lad collapsed at college full blown asthma attack a couple of weeks ago they called a paramedic etc He has been so stressed out worrying about me poor kid he is 16... I do think they need as it as they won't talk to me if anything he now avoids me in the house when he is in but had a tantrum last week said he is sick of me always being ill and he is sick of being dumped on people all the time when I end up in hospital.
So it is affecting them and I feel bad
I only recently found out what a troll was didn't know... Not so nice actions! Takes all kinds as they say
so sorry about yr girl what a shame... Frightening for kids all of this... pffttt bad enough for us.
It's good to read so much common sense on this. I am lucky as I do not suffer from depression, and never have. However, there is no saying that will continue in the future. It is a terrible thing to suffer from and affects all aspects of someone's life.
I believe that Terri-Rose is absolutely correct. We should let things take their natural course on this topic and as several of you have said, always report bullying/trolls etc and do not reply to them. That fuels the kicks they get from doing this.
I think the BLF team have also had a bit of flak on this matter that is not really justified. They have to approach any issues that arise in a professional and confidential manner, so we do not always, nor should we, know what is going on behind the scenes. I am glad to hear they are helping Rose through this.
I've read and re-read what I have written to try and make sure I don't sound critical and I don't think I do. That would be the last thing I would want this post to seem. Let's keep this board the wonderful, helpful place that it has always been since I joined it.
Lynne,yes I agree,and also a point worth remembering is,you should not be fearful as to what you want to say,as long as it is put in a appropiate matter,we are not a nanny state ,we should be able to voice. xxx
Hi am quiet new on here my self.and read that some one on the site as been upset by somebodys comments posted on here.it is a shame that somebody has been upset.as without this site. None of us would be able to communiate with so many people about our day to day illness.s and other things.so lets try and be HAPPY. On here to cheer up the people that are down.when we are up.With out people to talk and listen to ..WHAT WOULD WE BE LIKE ???? SO COME ON EVERYBODY.be kind to your friends on here... Kath......evo.
I so agree with everyone too. It is obvious that many people are scared and suffer from depression but a little kindness can go a long way. We should all help those who need it as much as possible and be understanding. I hope Rose will be back on here very soon as she is sorely missed. Evo1510 did you know that your post has been repeated on here 9 times? Made me laugh. Take care one and all and keep blogging, posting whatever! We all need each other and the humour on here is great! xxxx
I am also one of the new ones on this site and if there was such a thing as value for participating the this site would get top prizes. It was because off this site I was prompted to go for PR and I am just about to finish this week much more knowledgeable than previously.
Getting to the point of this blog, if only people who are bothered by these Trolls were firstly to not respond to them because that's what they want and boy does it disappoint them when you don't!. Secondly, you report them on the feedback button on the right. Do not worry about it, let the mentors deal with it, they have broad shoulders and they would also prefer that this scum were not on the site.
David, using the feedback button is not the way. They cannot identify what you are reporting. The best way is to click on the "Report" button which is at the top right of every post.
What bothers me about these people (trolls) is that their bad vibes can spread and make others tend to mistrust new people's posts and opinions. Their being around also makes all of us extra careful in what we are replying and to whom we are replying i.e. can make others wary of even attempting to make a joke in case it's misconstrued and the wrong people get reported. Everyone who's posted understands the dangers thankfully of people of that sort being around any forum, far less a medical one. This is a lovely site and although I'm fairly new to it would like to join with the old school members in ridding it of any threats. More and more people seem to be diagnosed with this illness every day and it would be neither right nor fair if they hesitated to put forward their personal medical concerns and were robbed of the help we have all had.
Hi
I have to totally agree with the second paragraph of Bumley's post - Ignore and Report.
All reports of abuse are monitored in the evenings and weekends as well as 9 to 5. Only in the most severe circumstances will action be taken at the time to abuse is reported - otherwise it will be left until the next working day. It is up to the moderator to decide what action to take - and as per the community guidelines we won't necessarily tell you what action we decide to take - or why.
BLF staff and Health Unlocked staff act as moderators - but we very much see this site as being self moderating with ocassional input for us - and this works 95% of the time.
And also sometimes people are too eager to jump in and comment on a situation when they don't know the whole situation - so just do what you all do best and offer positive knowledgeable support.
Everyone feels the same on here, WE WONT let the bad ones win, i am here if anyone wants to talk to me and will try to help out, although not at the computer for too long each day.
I hope you can sort out your bug ali and manage to stay settled in your home, so sorry to hear how serious your illness is, if you need to chat, give me a shout. We have to keep our spirits up no matter how we feel even when down. When my mum was in hospital before she passed away, i kept making jokes with her to make things easier telling her that i was going to kick her backside when she got home for making me drop everything and dash up to her and other things to try make her laugh. We cant always be upbeat, i know too well, at least we are all here for each other to shout, scream, laugh, cry, share our thoughts and fears.
I think we should try to ignore these foul people or they will make you feel worse than you already do.I remember that Gordon went through something similar and he was going to leave and he helps so much and other members go out of there way to help others lets just stick together and ignore them sending hugs to all.
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Grandma
New to this group and hoping for thoughts
Well, I'll go to the foot of our stairs!
Copd
