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Leave our Forum alone!

Posted , 16 users are following.

constance.de
constance.de

It really gets up my nose when people want to change our forum.  There are loads of sites where they can get professional advice/help.

We have become 'friends' on this forum.  We don't only talk about our woes all the time.  We listen, help/advise our fellow sufferers.  We smile with them, we sometimes cry with them, we are 'there' for each other.  It's great that we side-track occasionally.  Why talk about our illnesses all the time?  We have 'fun', too.

Hope you're all having a pain free, happy weekend.

Greetings from C. 💐

11 likes, 43 replies

43 Replies

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  • irene1055
    irene1055 constance.de

    Posted

    I suspect I'm one of these people mentioned, but I didn't say you had to change the forum, just that compared to others I've used, I found it difficult to navigate and somewhat confusing, even although I am computer savvy.

    Comments to people saying "You've just joined the 'club' and we have a new member of the club" followed by hear, hear! posts, does nothing to make new people feel welcome, and to me it doesn't feel like an inclusive forum now.

  • MrsO-UK_Surrey
    MrsO-UK_Surrey constance.de

    Posted

    Hi Constance

    I don't know whether I've missed something here but your subject "Leave our Forum alone" sounds somewhat confrontational and is confusing in that it doesn't say to whom it is directed.  I find that a bit concerning and off-putting especially for any 'newbies' looking in hoping to find help/advice following their diagnosis of PMR and or GCA.

     

    With regard to your comment "There are loads of sites where they can get professional advice/help" - what are you implying here?  I have been on this forum for some 8/9 years - it was the first of its kind as far as these illnesses are concerned and has always been run in both a professional, informative and friendly manner. 

    MrsO 

    • constance.de
      constance.de MrsO-UK_Surrey

      Posted

      Hallo Mrs 0 

      Someone had said something like "this forum should be for help and discussions on PMR/GCA only - no side-tracks".  But when on the forum we often 'diverse'.  This is unacceptable to some, and I do understand, but  some of us enjoy these sidetracks - they occur because we are discussing our problems, but we don't want to be serious all the time.

      I do agree I should have given the discussion another name, but I started it on the spur of the moment, silly thing to do!  I opened Pandora's box!

      Forgive me if I have upset anyone.

      Constance

    • karen28161
      karen28161 constance.de

      Posted

      Constance I love this forum because like you say we an all get help and advice when we need it , but we an also have a laugh at some of our painfull story's to help cheer us up on one of our bad days xxx keep up the fantastic help that we all need xx
    • MrsO-UK_Surrey
      MrsO-UK_Surrey constance.de

      Posted

      Oh thank you for replying and explaining the reason behind your post, Constance. 

      I agree it is quite easy for discussions to go off at a tangent sometimes, which can give some much needed relief from the agonies of PMR/GCA but, of course, there will be contributors who are purely looking for help and advice - the main reason for which this forum was set up. 

      Have you looked at any of the other PMR/GCA forums, such as that set up by the North East PMR GCA group or the HealthUnlocked PMRGCAuk forum.  The NE one in particular has various subjects under which to post such as photos, jokes, as well as lots of helpful tips and advice for coping with PMR and GCA.

      MrsO 

  • david14272
    david14272 constance.de

    Posted

    Good Morning constance. just come back from first walk in the park.dont let this get to you, even on the best run Forums posts will get side tracked. We start on a certain subject & some one will mention a hobby etc that they do to help with there problems then next minute we are onto flower arraning A/O.I think we should start the week on fresh note. Best Wishes To One & All. O just to add M/S have 50% off on clothing.
    • constance.de
      constance.de david14272

      Posted

      Thanks David.  I'm not letting it get to me.  I find the comments - even the criticisms - interesting.  It just shows how different we all are.

      Have a great day.

      C.  💐

       

  • snapperblue
    snapperblue constance.de

    Posted

    If I understand which comments you are referring to, I think we are talking about two different things.

    My response to Irene was NOT about "off-topic" comments about  dogs or location or where you go on vacation.  I think these are the friendly things you referred to.

    I was referring to "on-topic" PMR/CGA related topics that appear in the middle of a thread. For example, someone posts about reducing pred; in the middle of the responses, someone says "I may have GCA, here are my symptoms."  Then the thread contains answers to both topics.  

    I have often remembered a comment and wanted to find it again, but it is difficult to find it because it is buried in the thread with a different heading.  As misdiagnose says, this also makes it hard for newcomers looking for a topic to find all the pertinent posts.

    Also, sometimes the thread is taken over by responses to the second topic and the original poster does not get answers on the original topic.  That is when I call it "hyjacking" the thread.

    I have not seen any comments indicating that we should not offer friendly support that is not directly related to our illness.  

    I think this is all a misunderstanding.  Let's all just be of good cheer!

    • constance.de
      constance.de snapperblue

      Posted

      Hallo snapperblue.  I first joined the PMR/GCA forum about 8 months ago.

      My first question on here was "What comes AFTER PMR?"  There were 41 topics dealt with in that discussion (altogether 83 in all, if I remember rightly)!  before I got an answer from Eileen.  You can imagine my surprise!  Her reply made me laugh.  I've loved this site ever since.

  • Mrs.Mac-Canada
    Mrs.Mac-Canada constance.de

    Posted

    Hi Constance,

    I love this forum just the way it is.  I come for information and support and both are offered freely by all the wonderful people I've "met"💕.

    In the over two years I have been here I have never heard anything but positive things until today.  I don't have time to follow two forums (NE UK and this one) and I'd be sad to leave my friends. I have found several people through our "sidetracks" that I hope to get together with in person this year.  The people on this forum are people that understand my limitations and can advise me on things like exercise, eating habits, travel etc. and I am definitely guilty of getting off track (hijacking).  Private messaging could be an answer but then it's more limited.  Maybe specific questions can be asked that indicate the need for answers to the question only.  

    Sorry, I wasn't going to respond to this but having a pred day and feeling frustrated and grumpy😡😬

    Anyways, hope you all have a lovely day and that it is sunny where ever you may be☀️🌻🍀

    Hugs, Diana

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