goodbye and good luck: Ok, I’m leaving... - Lung Conditions C...

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goodbye and good luck

eleanordigby profile image
94 Replies

Ok, I’m leaving this group, but will carry on with the others I belong to. I doubt I’ll be missed. I don’t need advice or support myself, was just hoping to help others. But… zero support for my challenges to a conspiracy theorist who so obviously joined to promote anti vaccine propaganda & US websites spouting hateful rhetoric. “Report” seems to take days to be acted upon, and then only partially. I don’t feel welcome here, in a group in which such people are tolerated by others, & despite it being against HU’s own policies.

Good luck and good health to you all! Take care of yourselves x

94 Replies
mylungshateme profile image
mylungshateme

Aww sorry to hear this, I'm not on here much have a lot going on so not sure what's happened. But good luck and have a lovely Christmas. 🙂

eleanordigby profile image
eleanordigby in reply to mylungshateme

that’s kind of you and you have a great Christmas too 😊

Damon1864 profile image
Damon1864Volunteer

Oh dear it's such a shame you are leaving but if you honestly feel this way there is nothing we can do. . Wishing you luck and good health, please take care. Have a lovely day 😊 Bernadette and Jack 🐕 xxxxxx 🌻🌻

eleanordigby profile image
eleanordigby in reply to Damon1864

good health is what we all long for - thank you Bernadette (and Jack)

sassy59 profile image
sassy59

I must have missed something but wish you well. I joined ten years ago because my husband has COPD among other things and I felt isolated. I’ve never looked back and love this site. People come and go as they wish.

Take care

Suzie42 profile image
Suzie42 in reply to sassy59

This a bit strange that non of us have seen these posts, oh well we will carry on as usual 🙂

sassy59 profile image
sassy59 in reply to Suzie42

We certainly will 👍😀

peege profile image
peege in reply to Suzie42

Was in replies to someone else's post 4 days ago from a couple of nuisance infiltrators. HU has now closed the Post. Most members would have passed by it as the post wasn't really relevant to most.

frose profile image
frose in reply to peege

FYI Do you remember I met my Mancunian friend on here, 6 or 7 years ago? He died in the early hours of this morning 😞

hypercat54 profile image
hypercat54 in reply to frose

I am so sorry frose. I can't immediately recall who this was so can you enlighten me please? Ta.

frose profile image
frose in reply to hypercat54

Sorry, I can't even remember his screen name!

peege profile image
peege in reply to frose

Of course I do, I'm so very very sorry to hear this Frose, I've often wondered if you were still in each others lives enjoying music. I'll let our friend in the South know, she'll remember too (she's off for a spell in the Royal Brompton tomorrow).

Lots of love to you , Penel ×××××

frose profile image
frose in reply to peege

Thank you 😊 yes, please give my love to our southern friend and wish her the very best fir the Brompton. Hope you're well! Xx

O2Trees profile image
O2Trees in reply to peege

And love for friend in the South from me too P. Hope it all goes well at the Brompton. xxx

O2Trees profile image
O2Trees in reply to O2Trees

And how sad about your Mancunian friend, frose. Hope happy memories sustain you in this loss. Music is such a powerful thing to connect people. You take care, xxx

moogle profile image
moogle in reply to frose

oh i'm so sorry but you still have the memories of the friendship

eleanordigby profile image
eleanordigby in reply to peege

that’s right, there were 2 threads, one is closed & one deleted completely. There was actually another member posting similar stuff but we had a perfectly harmonious discussion!

Tykelady profile image
Tykelady in reply to sassy59

Like you Sassy, I see people leave but have never seen what causes the upset. Sometimes there are posts from members which (I feel) might need a little gentle criticism but I don't reply because I cannot think of a tactful way of making a suggestion.

Patk1 profile image
Patk1

I dont know what's gone on.l Eleanor.hope u can reconsider xx

eleanordigby profile image
eleanordigby in reply to Patk1

thank you, Pat. I respect your views so your support is appreciated

RoadRunner44 profile image
RoadRunner44

Gosh, I was shocked to read your post. I certainly haven't t picked up any posts about conspiracy theories or would have responded. There must be much more to this as you are really angry and upset. Such a shame but it appears many of us have no idea what you have experienced or refer to. Perhaps you can enlighten us further if you feel it would help to clear up the misunderstanding.

peege profile image
peege in reply to RoadRunner44

The post and replies was 4 days ago, now dealt with by HU so hopefully eleanordigby will now stay 🙏

eleanordigby profile image
eleanordigby in reply to RoadRunner44

thank you, RR - it’s probably best left now, HU did eventually take action so it’s gone anyway - but thank you for your understanding

CDPO16 profile image
CDPO16

I'm not aware of any recent conspiracy theorists recently but may have missed something. I have always found this forum to be a friendly and supportive place but you must do as you see fit for yourself. Best wishes to you.

CarolMcl profile image
CarolMcl

I honestly haven't a clue what you're referring to, I have never seen such posts, personally I've only witnessed care, empathy and support.

hypercat54 profile image
hypercat54

Hi I missed the post originally but found it and have put my 2 cents in too. You are quite right as conspiracy theory isn't allowed on here. However it's up to admin/mods to decide on how to deal with it.

frose profile image
frose in reply to hypercat54

See my reply to Peege

eleanordigby profile image
eleanordigby in reply to hypercat54

I just found your reply and thought it very well informed, so thanks for that 😊

hypercat54 profile image
hypercat54 in reply to eleanordigby

Thanks. I'm just sorry I missed it first time around because my reaction would have been the same.

I did report but all admin did was close the post to new replies. The comments are still there though which surprises me because they are clearly conspiracy theorists.

However I will say that admins/mods always have the final say and we have to respect this. I have always found them to be excellent on this site which has zero tolerance of anyone breaking their and HU's rules.

eleanordigby profile image
eleanordigby in reply to hypercat54

nearly all the comments have gone now and the poster is no longer listed as a member

Jaybird19 profile image
Jaybird19

Sorry you are going totally agree with you about the conspiracy theorists that hazve poked their noses into our posts and should have been removed by the moderators. Did hzve to go a long waydown one post to see them but they were very voluble . Can you not reconsider and just complain to those in charge of content .

eleanordigby profile image
eleanordigby in reply to Jaybird19

Thanks for your kind words jaybird. All the unpleasant posts have been deleted now

hypercat54 profile image
hypercat54 in reply to eleanordigby

Oh that's good I will have a look.

peege profile image
peege

Could it be that the report thingy didn't appear to work because the issue was over the weekend? I dont think they work weekends.

I didn't see the comments at the time however, I've just had a look and I'm so sorry you felt you were on your own there eleanordigby and felt unsupported.

We do occasionally get a nutter on here and they're usually dealt with promptly. P ×××

eleanordigby profile image
eleanordigby in reply to peege

that’s so kind of you to say so - normally I’d probably cope but at low times things get to us

nutter is a great description

Derek profile image
Derek

Hi Eleanordigby, l haven’t seen you post and probably like others who voiced the same, l’m a rare visitor. Like yourself, l’ll contribute to help if possible or perhaps if there’s something l’m interested in. I also would like to know why HU didn’t block such people. If they are still active on here l will consider leaving HU as it’s a great forum to help people not, in my opinion, to voice unfounded rhetoric likely to cause ill feeling and upset folk. The mental strain of coping with serious illnesses is difficult anyway along with the long waits for many to get appointments. Take care as we all still need to stay safe.

eleanordigby profile image
eleanordigby in reply to Derek

you’re right about mental strain, sometimes I think it’s even worse! the person is no longer active so that’s good 😊 you take care too 👍

moogle profile image
moogle

oh no, please stay here. i really appreciated you stating the facts [as I see them too] we need members like you

eleanordigby profile image
eleanordigby in reply to moogle

oh thank you moogle, that means a lot, I knew you were on my side and it helped 😊

moogle profile image
moogle in reply to eleanordigby

I felt you were my champion that day i was too unwell to think things through

eleanordigby profile image
eleanordigby in reply to moogle

bless you moogle, I was determined not to let it go unchallenged

how are you feeling now? x

garshe profile image
garshe

I havent a clue as to what you are referring to. You seem to be the only one who has experienced this .Good luck to you . xxSheila

slram profile image
slram

I have been here a few months and everyone I have encountered has been polite, kind and helpful. With an attitude like that, the fault may be with you or you are over-critical. Lighten up and enjoy life and look within.

moogle profile image
moogle in reply to slram

the fault was with the ANTIFAXER

slram profile image
slram in reply to moogle

So you're leaving because of one idiot?

Eastend555 profile image
Eastend555

Well I dont know what your point is .

What conspiracy sorry i dont getwhere your coming from

Mostly people try and help each other obviously we dont agree on the same things but thats good

Obviously you gotta do whats right for you

Gloryvine profile image
Gloryvine

Sorry to hear this, Eleanordigby. Your advice is so sensible and well informed. I'm sure you've been a much valued member of the community and a good antidote to the uninformed...

eleanordigby profile image
eleanordigby in reply to Gloryvine

thanks, I very much appreciate you saying that, and I hope you can get back on your biologics very soon!

Mrbojangles profile image
Mrbojangles

i treat conspiracy theorists like petulant toddlers.

Ignore them and they usually calm down but pamper them and they continue screaming.

Stay safe…. Xx

eleanordigby profile image
eleanordigby in reply to Mrbojangles

I may well take your advice! although this was quite extreme…

Morrison10 profile image
Morrison10

hello, I’m on this site also PCD, condition I was born with. My posts are a mixture of health and treatments etc, but also about happy things I’ve done either now or during my 87 years of life, showing what’s possible, Haven’t seen conspiracy theories, hope administrators can remove them pdq. I find HU beneficial. Regards Jean.

Alberta56 profile image
Alberta56

I was going to post to thank you for giving the details of the Australian breathing site and of the ELF conference (which I ought to have tucked away somewhere, but you've made it much easier for me to find.) Sorry you're leaving. I've enjoyed your posts and found them informative. I must have missed the conspiracy theorist, or dismissed him/her as not worth bothering about. Most people on this site have the sense to make their own mind up. Anyway best wishes and good luck for the future.xxx

eleanordigby profile image
eleanordigby in reply to Alberta56

you’re very welcome to any information I can share and I’m so glad it was useful 😊

Karenanne61 profile image
Karenanne61

I'm sorry you feel the need to leave us. I haven't been aware of the posts that you are referring to. I have found so much support, information and humour here. I've everything appeals to everyone but it's easy to just move on. I hope you find what you are looking for.

Aingeful profile image
Aingeful

I must have missed them too. I've only experienced help and support on here. Please reconsider and just ignore any negative remarks, they are not worth the effort .

Wonderboy6 profile image
Wonderboy6

Am truly surprised, you seem to be made of sterner stuff than that, here is wishing you all the best with your journey. Regards, Ian.

eleanordigby profile image
eleanordigby in reply to Wonderboy6

thank you Ian 😊

leo60 profile image
leo60

Like most others, I have missed the post, but feel bad for you, Such a shame you feel the need to go, your input has been really helpful and supportive. It would be great if you changed your mind, but I can see why you wouldn't want to! Thank you for said input, take lots of care xx

eleanordigby profile image
eleanordigby in reply to leo60

your kind comments are very much appreciated, thank you x

Patk1 profile image
Patk1

I've seen their posts now, and reported. Theyll be removed.id not let thm drive u away.hope u reconsider.x

eleanordigby profile image
eleanordigby in reply to Patk1

yes the person seems to have gone now and all the negative comments removed - thanks again Pat

MoyB profile image
MoyB

Like most other people, I've not seen the post you refer to, so am a bit shocked that you are leaving us.

Sorry to see you go as I have valued your input.

Take care.

xx Moy

eleanordigby profile image
eleanordigby in reply to MoyB

thank you

O2Trees profile image
O2Trees

I'm confused here, Eleanordigby. I think you mentioned on the Covid post that you were planning to leave, and felt you were "a lone voice", "very alone here, unwelcome, expressing my views". But why? Ive looked back at your replies on several posts and they seem sensible, supportive, and welcomed by members as such. One of your replies garnered twelve likes! Replies to your post here have surely shown that you are valued by quite a few members.

So I dont get it. I know vaccines can raise difficult feelings, especially when people may have had a bad reaction but surely we can discuss this here without feeling got at. I didnt see anyone giving you a hard time on that post and you contributed a lot. The anti-vax link you referred to has been deleted (moderation does work!) so I havent been able to check it out. There are many competing vested interests on the internet, but this is its nature - contentious stuff creeps in all the time but we can and do deal with it.

You must do what is best for you, though it does seem a bit strange when it's clear above that you are welcome here. All the best whatever you decide.

frose profile image
frose in reply to O2Trees

See my reply above to Peege x

eleanordigby profile image
eleanordigby in reply to O2Trees

I’m not referring to vaccine reactions. The numerous comments and links I’m talking about, which you don’t appear to have seen, have all been deleted. I appealed for support, but got none, so I don’t know why you think my feelings “strange”. I find trumpian style propaganda, ie lies, and particularly hate filled rhetoric directed at scientists and doctors, very alarming. It’s been used to change the course of elections so is also anti democratic. I’m relatively young here (41) and don’t want this to be my or my children’s (or grandchildren’s!) future. Most people here seem almost twice my age. Maybe that’s relevant, in that they’re less aware of these threats, I don’t know 🤷‍♀️

Thepainterswife profile image
Thepainterswife in reply to eleanordigby

That’s a very relevant point , I’m 69 and worry terribly for the future of my grandchildren , I’m glad I won’t be here to see the world in 50 years time and I can well understand how difficult it is for some people your age who have no choice but to deal with what may well be a very bleak time . Hopefully, the human race will find a way to heal itself and the planet rather than destroy it 🙏

O2Trees profile image
O2Trees in reply to eleanordigby

I dont disagree with anything you have said and agree about Trumpian lies. It's true I didnt see the links. But if no-one replied why would you assume lack of support? Most people are busy just surviving though however old, my impression is that most people here are only too well aware of the threat to our planet, profits made by big pharma etc etc - no-one wants their grandchildren to suffer. You may be right that people have different priorities at different ages (though personally at 76 Im out on pickets, NHS demos against cuts etc etc fairly regularly). There are definitely younger people here besides us oldies!

I dont know whether this has anything to do with the forum's rules which say we are not to be "political" in our posts and replies. We used to have rampant debates re e.g. brexit but less more recently and I personally miss those but do see why it's important not to alienate members who may be offended by something said here, when their main reason for being here is to get support for their or their relatives' lung conditions.

Still dont get though why you feel so knocked back by members not having responded to you on this point when they have been so friendly on other posts. You're still here which is good and the forum will certainly benefit from your input if you do stay.

Beshmeta profile image
Beshmeta

Hi - really sorry you’re going. I did not see the offensive post so please don’t assume everyone is not supportive. Or is your post aimed at admin? I know you have provided some very useful advice to posters and I am sure they valued your contribution.

eleanordigby profile image
eleanordigby in reply to Beshmeta

Very kind of you to say so, thank you. It was really the lack of support from others. Admin did take days to sort it but someone pointed out moderation is less at the weekend.

Thepainterswife profile image
Thepainterswife

I can only echo what’s already been said , I didn’t see the post . I don’t check in every day so I’m often replying to posts a day or two after they’re posted . I am sorry that you felt you weren’t supported because that’s exactly what we re all here for 🙁 I wish you all the very best for the future .

eleanordigby profile image
eleanordigby in reply to Thepainterswife

that’s very nice of you, tpw- all the best to you (and tp!) too

Otto11 profile image
Otto11

Hi I too havnt seen this post but wanted to say how helpful you were a few days ago when I had a chest infection. Im sad & sorry to hear you say you are leaving Please re consider.

eleanordigby profile image
eleanordigby in reply to Otto11

how lovely of you! I hope you’re feeling better. I’ve acquired a fair bit of information from my many stays in hospitals around the south east, and done lots of research, so if other people can benefit that makes me happy 😊

Otto11 profile image
Otto11 in reply to eleanordigby

Thanks again. I’m slowly on the mend & off Doxycycline now. It gave me a dreadful. headache but finished the course. I was just so fed up missing my respiratory appointment. Please stay your knowledge is so helpful to us newbie’s. I hope you get well soon too. Take care x

eleanordigby profile image
eleanordigby in reply to Otto11

really hope they fit you in soon, it must’ve been so disappointing - infections often do this to us 😠

Thinkhealthy profile image
Thinkhealthy

oh man ! Don’t the haters and nutters just really annoy ! I don’t know which post got to you but sometimes our scroll down ability just vanishes. Hugs x

eleanordigby profile image
eleanordigby in reply to Thinkhealthy

I loved those hugs, thank you 😊

Thinkhealthy profile image
Thinkhealthy in reply to eleanordigby

any time - hugs hugs hugs x

horseygirl_0103 profile image
horseygirl_0103

sorry to see you go sorry to see you feel this way

Take good care & have a super xmas & let 2023 be a better one for you

eleanordigby profile image
eleanordigby in reply to horseygirl_0103

thank you and I wish the same for you

Nicholatracy profile image
Nicholatracy

so sorry you’re leaving. What other sites are you on please 🐞

eleanordigby profile image
eleanordigby in reply to Nicholatracy

oh just the asthma one and then BHF & NRAS

I was looking for an Addison’s disease forum but can’t find one

Anselm198 profile image
Anselm198 in reply to eleanordigby

There is an Adrenal Insufficiency one

eleanordigby profile image
eleanordigby in reply to Anselm198

that’d do, thanks. I’ll have a look 😊

watergazer profile image
watergazer

like many others I have missed the posts you are referring to Wishing you well x

eleanordigby profile image
eleanordigby in reply to watergazer

thank you

frose profile image
frose

A bit harsh? I don't know the poster, nor did I see the posts that upset them; however, your response feels unduly unpleasant.

eleanordigby profile image
eleanordigby in reply to frose

very mean comment wasn’t it, and there was an even nastier one further up - happily both now deleted

O2Trees profile image
O2Trees in reply to eleanordigby

I remember that from yesterday - it was nasty.

mylungshateme profile image
mylungshateme

And I expect it's a reply like this that shows a complete lack of respect and empathy for others that's impacting on their mental health and feel they need to remove themselves. If you can't say anything nice, don't say anything at all. You don't know what people are coping with behind closed doors, we should treat people how we want to be treated.

And when someone clearly states they are low, try to build them back up an not knock them further just a thought. Have a lovely day everyone. 🙂

eleanordigby profile image
eleanordigby in reply to mylungshateme

that’s what I always think - we just don’t know what others are dealing with do we? thanks for your understanding

Love your name and feel the same about mine’

mylungshateme profile image
mylungshateme in reply to eleanordigby

I see the comment has been removed, now mine doesn't make sense lol. I was just shocked by there rudeness. Ignore people like that not worth your energy my love. 🙂

eleanordigby profile image
eleanordigby in reply to mylungshateme

With people like that, I try to think they’re probably ill and feeling c**p. Also prednisone over a long time doesn’t half mess with your head 😢

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