Please read this and know that I am not trying to be hateful.
Posted , 19 users are following.
I have been using this website for a little over 2 years. and I've learned a lot from this specific group. I would not be where I am today had I not had this group to help me out. there are a couple of things that really tick me off and I know I'm going to make some enemies by saying this but by the same token I feel like some people are doing this without realizing it's wrong to do.
it is not right for you to "kidnap" someone else's thread. what I mean by that is that there are people, some of the same people that will ask a question about themselves on another person's thread. this is not the place to do that. if you have questions you should start your own thread. it's not only impolite to interrupt somebody else's thread with your own problems and questions, and you will get so many more responses if you start your own thread. This thread should be all about the person asking the first original question/concern. it should not be interrupted with someone else's problems/questions. I recently had to unfollow my own thread because it had gotten so out of hand and it had gone off in an entirely different direction so it was no longer about me and my questions. I tried to wait it out but it was still getting responses a month out from the original question I had.
my second complaint really is not quite the same as the first thing I mentioned. I see so many people that will respond to the question posted by telling their own story . I do understand that sometimes our own story is similar to the person who started the thread and in that case I can understand wanting to touch on some details of your own story so that the author of the thread can relate it to their own problems . but that's just it, a few little details should be all . The person posting the thread is looking for help. to show true compassion and understanding I think a responder should keep their comments to 90% about the person that started the thread and only 10% about you. I am just as guilty of doing this myself. and yes, the person who started the thread probably will feel better knowing someone else is there experiencing the same thing they are but... I think we can do that without giving every vivid detail of your own story.
so having posted this I'm guessing I'll probably make some enemies or at least make a few people mad at me. And that was never my intent . I mean this in the best possible sense . I just think that we could all use some reminders of the way to talk online in these groups .
Thank you for reading this rather long post.
1 like, 72 replies
sami5555 amkoffee
Posted
Awww,
I bet it was me. I finally after 5 years made a post because I had read Radmans post, and for some reason i finally had the guts. I thought it was going to everyone but not familiar how exactly this works it just went to him. I now know how to start my own discussion. Im just so happy to be a part of this awesome forum.
freda07782 amkoffee
Posted
Hello amkoffee, you might be talking about me! I confess i do not know the" rules" or " etiquette"of this wonderful website.
When I was first told i had PMR i didn't even know there was such a disease, so this website was such a welcome site. I have learned so much and have asked many questions. Yes, even daring to ask questions to folks in threads that i had not started!!!!! i had no idea this would irritate some and in some way I have a little difficulty understanding your complaint.
Maybe you should list the things that you find annoying so we don't go down that road.
i would like to say thanks for all the extremely informative information i have learned from this site, regardless of who started what? And an enormous thanks to EILEENH!!!!! who i hope i haven't annoyed by butting in on her thread!
Freda
lynda62707 freda07782
Posted
thx Freda...a voice of Fresh Air!!
I too had never heard of this disease prior to my diagnosis, so this forum has been a wealth of information for me.
I don't always agree with everyone, but I sure have become more educated!
thanks to all for a safe place to turn to!
BettyE lynda62707
Posted
How boring if everyone agreed with everyone! As long as folk debate politely on line, in the pub or face to face then that's breath of life.
Wonder how we'd all get on face to face? Meanwhile, I love you all and thank you.
BettyE freda07782
Posted
I seem to remember that Eileen raised the question of how we are supposed to relate posts that are relevant to each other so that we can read them in sequence even after they are no longer new. I've related my experience of upper gastrostinal endoscopy on that forum until I'm boring even myself. I think in my next life I'd copy and save everything I've ever posted to have it ready to regurgitate on demand. New people all the time but same old problems over and over.
I would have thought that this was not beyond the capabilities of the young IT experts who have made these forums possible. After all this is what Google does, isn't it? Amazing cross references which brings us back to tangents!
lynda62707 BettyE
Posted
I SECOND THAT BETTE!!😘
EileenH freda07782
Posted
It NEVER annoys me when someone buts in on a thread with something related to PMR - they are conversations and conversations do stray. It does irritate me a bit when people throw in totally unrelated comments although sometimes they are jokey intermissions which add to the camaraderie of the group by giving us a laugh.
However - if I can reply to the same question from 40+ different people without losing it in public, surely it is possible to forgive the odd digression in a thread?
lynda62707 EileenH
Posted
👍👍👍....thx eileen!
freda07782 EileenH
Posted
....thanks Eileen, as i was one who unknowingly "butted in" not realizing i could be upsetting somebody out there, i appreciate your kind comment. As I see it, this site is one place where we can ALL read and learn about PMR once we are told that is what is causing our discomforts. I for one thank ALL the readers on this site for their input, especially YOU Eileen, please don't stop writing for fear of misbehaving! Freda
Silver49 EileenH
Posted
I think it would be a loss if everyone thought they couldn't add some humour to what at times can feel onerous for many. It's not an easy journey and there are many ups downs. We all need some laughter in our lives. I notice the forum has become very serious of late though that may be as much to do with the recent change and everyone trying to get to grips with it. I hope that's the reason. I think there are some people missing from the forum who along with their words of wisdom often added a touch of humour. They say laughter is the best medicine.
lynda62707 Silver49
Posted
TOTALLY AGREE SILVER!!! 😜👍😁😁!!
kate50809 Silver49
Posted
From my understanding of her post this is not the sort of thing Amkoffee was complaining about.
lynda62707 kate50809
Posted
No, I think it was.
Silver49 kate50809
Posted
I am not suggesting it was but I feel that the humour has disappeared lately and part of my thinking was that the forum has been problematic with the changes. I wonder if we have lost some people. I know some of the posts interspersed with the support and advice would bring tears of laughter to my eyes. Eileen has a ready wit which appeals to my sense of humour. Perhaps we could have a thread specifically for the humour. We all need it and I have a warped sense of humour. The thread would be medicinal, of course.
mary19068 kate50809
Posted
Hi All
amkoffee was not complaining about humour on the forum she was making the point of replies moving away from the initial post. This happens occasionally due to the fact that a member asks a question on their inquiry and gets a reply from member and another member may see something in that reply that is of interest to them and will answer that member with a question, other members may reply to that question and so it goes on we have digressed and lost the initial post. This is a regular occurrence on a few forums of which i am a member. Members do not do this intentionally it occurs without realisation. I'm sure we will all be careful not to do that in future. If we see something of interest in a someone elses reply we will be sure to start a new post to that member. That way the initial post/inquiry is answered by various members without any digression.
As for humour i am your regular goofball. If we lose our sense of humour while dealing with PMR or GCA and taking preds you will be a miserable wreck. Even though some days when i was going through trauma on my pred journey, i didn't have the energy to raise a smile, but still tried to keep up with my sense of humour.....you have to keep laughing, keep joking and have as much fun as you can in your PMR/GCA/Pred journey...smile and the world smiles with you!😃😁🤗👍
lynda62707 mary19068
Posted
I SECOND that Mary! it's mt sense of humor that gets me through EVERYTHING, (not just pmr!)....
BettyE Silver49
Posted
If only there was some way of identifying each and every post with some sort of tag so that when, in a reply to a post we wished to refer to something in another, we could refer to it by its identifying marker then everyone could choose which references seemed relevant/appropriate and ignore those that seemed to them a waste of time.
Old fashioned library catalogues had a system where a book might be entered on several different cards all then arranged in strict alphabetical order.... so a biography of, say, a cricketer would have a card in the cricket section and a card in the biography...just the one book but immediately clear to anyone searching wherever they began and the library didn't have the expense of having two copies. Not sure what happens now.
Silver49 BettyE
Posted
That would be so useful. Perhaps the powers that be could come up with a solution. It must be reasonably simple for those who have redesigned the website. I am such a technophobe I don't how to do that and find changes challenging in the technical world but as I say to my grandchildren who just press buttons and fix it for me, "Can you light a fire if we have a lengthy power cut"? I know they laugh at my funny ways but I can feed the area if the power goes down.
mary19068 lynda62707
Posted
Hi lynda62707
Exactly lynda! There's enough trouble and grief in the world you have rise above it all with a but if a laugh and a joke...otherwise we would be dead n the water.....so as you always say lynda keep:-
SWIMMING, SWIMMING, SWIMMING,
LAUGHING AND GRINNING,
AND COME OUT WINNING!!!
🏊🏊🏊😊😁😄😉🤗✋👍
Wow!! ...i'm a poet and didn't now it!!
EileenH mary19068
Posted
Sorry but I have to disagree: it WILL happen again. I have been on this forum for over 9 years. Every so often someone makes a similar comment - but it makes no longterm difference as new people arrive all the time and start from scratch. That's why I answer the same question dozens of times, they haven't even seen last week's posts, never mind last month's or last year's. If someone feels a need to ask a question that is nothing to do with the original post I will still answer it there where it is. And the discussion may well restart as a result. It's the way forums tend to function. I often suggest someone starts a new thread for their question - but you would be surprised how many people can't work out HOW to start one.
mary19068 EileenH
Posted
Hi EileenH
Yes, of course, new ones coming through wont understand about intruding on a convo that is in progress. I am just saying i will try and not be the cause of a convo to digress.
Going forward...if a reply interests me in some way i will be sure to start a new thread with that member.....keep smiling 😊
lynda62707 mary19068
Posted
You're Such a Goober mary!
btw...that's a term of endearment in case you were wondering!
my daughter's and I use it (to each other) all the time. 😜😁😁👼
mary19068 lynda62707
Posted
Hi lynda62707
I like it!😊🤗👍
Vicki200252 lynda62707
Posted
how are you getting the imogies?
lynda62707 Vicki200252
Posted
Vicki....I'm on my smart phone, (I don't have a computer!) the emojis are on the keyboard for my phone!😁😘
Vicki200252 lynda62707
Posted
Lynda....I'm on my smart phone as well but can't get emojis.
I will keep trying .
mary19068 Vicki200252
Posted
Hi Vicki200252
If you go to bottom left of your keyboard you will see a black emoji next to the word 'sym' press on that and all the emojis should come up...👍
ptolemy mary19068
Posted
The emojis show fine on my phone but only the skull shows correctly here, all the others come out as question marks. What sort if phone have you got, is it an iPhone? ☠
Anhaga ptolemy
Posted
Oh look! A tangent!
mary19068 ptolemy
Posted
Hi ptolemy
No....my fone is a Samsung Galaxy S5. ....
ptolemy mary19068
Posted
Ah mine is an iPhone. ☠ I have discovered a hand works too! ✋ but only a yellow hand.
EileenH ptolemy
Posted
Maybe it is taking a jaundiced view of the forum rubbish...
peggy_56092 EileenH
Posted
Smirk.....(have no smilies)
lynda62707 EileenH
Posted
lol...that was pretty clever Eileen!
Vicki200252 ptolemy
Posted
same
Rudivl EileenH
Posted
...yes Eileen... I see you patiently reply with the same information time and time again to folks who are new and/or haven't read the backlog of information already posted. You have the patience of a saint! Thank you!