I thought you would be delighted to hear that HU seems to be a little bit broken this morning, and all my admin functions have disappeared. Unless that is, I've been given the sack and nobody has told me!
Lucky it is Sunday and I am with the family. :-0
Please don't post about leaving the forum. It's easy just to leave - click unfollow. You can always come back any time.
However, in a day or two a decluttering exercise is going to take place. So if there is something that you want to keep for your own records/memories, it might be a good idea to copy and save it.
Have a good day,
Kate
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Polywotsit
PMRGCAuk team member
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Just to let you know your book helped me tremendously when I first started my journey five years ago with pmr. Also my OH had a hard time adjusting to pmr(still thinks I'm not ill) I thrust your book at him to read, and he said mmmm (still not sure what he means) but many thanks hope you enjoy your day.
Well that was amusing. I clicked on the link to this post and the whole page just scrambled. EVerything was on the page that loaded, but it was all squashed over to the left of the page and everything overlapped everything else. It took 3 attempts to get it to load.
“Please don't post about leaving the forum. It's easy just to leave - click unfollow. You can always come back any time.”
In my years of support group experience, saying goodbye, at the end of participation is important for both departing group members and the remaining members.
As mentioned in another post, friendships and connections are made that warrant a “goodbye” of some sort. Departing members often wish to express gratitude for the support they’ve received, and without notice, it can leave remaining members to worry as to why they haven’t heard from the member who has “dissapeared”.
Seems there have been some divisive issues on here as of late which can certainly negatively impact the optimal functioning of the forum. These will arise despite rules, group guidelines etc because we are dealing with humans here...indeed a large number of diverse members who have a variety of needs. Even focusing on common ground (PMR/GCA) means that we still have diverse needs, and these needs will change.
I, for one gets my diverse needs met by being active in this forum and the FB group. In the beginning I mainly was seeking medical advice to I went to a GP, and later a rheummy (which was mite stressful than helpful). This forum provided complimentary support and information.
Later on in my journey I needed guidance and direction how to deal with adjustments that needed to be made in my close relationships as a result of my illness. I enjoyed the humour and compassion I found here, and now find on the FB group.
For me it is not “either/or”.....it’s both.
I’m not likely to post humorous messages on here, or provide medical/tapering advice on in the FB group, or violate copyright laws/protocol on any site. So following the “rules” is relatively easy for me.
I have responded to Kate’s latest post advising people to not post that they are leaving. I disagree with this and my rationale is listed in my response to her. Saying goodbye to a group of people who have been supportive and compassionate is important to both the departing member AND the remaining group. When people just “disappear” it can cause the remaining group members to worry or feel anxious. Let’s face it we pour our hearts out here at times, in addition to seeking advice about everything from tapering to medication, to processing Dr.’s orders, etc. That’s what makes the forum connected and strong.
Now if someone is simply posting to “stir the pot” that’s quite something else. But from what I’ve witnessed, although not part of the purpose of the group, posting about one’s birthday, or a cute photo of their pet, or a beautiful picture of their garden, is certainly not malicious in any way.....they are simply being themselves. The greatest gift of support we can give people is meeting them where they are at (something I’ve done most of my life, and certainly during my 20 year career with clients as a support group developer/facilitator).
I think I know where you are coming from, but I do feel if a bunch of people who have threatened to leave were to start posting their "goodbyes" that would really stir up the negative feelings we are trying to avoid. Probably the best thing for such people is to turn off the notifications and take a breather. People come and go from forums such as this all the time.
There is one exception, and it has little to do with the recent fracas, and this is concern for those who've obviously been struggling and not hearing from someone like that without previous assurance that they are getting on better can be worrying.
I completely missed the post which seems to have been the last straw for the administrators so my main reaction has been curiosity.
I understand not wanting things to escalate. All of us probably want things to settle down, hence asking Kate to return bringing her experience and expertise.
I also understand a desire to make things manageable and relevant.
My approach has always been to “sift the gems” ....signing in, reviewing content, and reading/responding to the posts that are relevant or connect with me in some way. I’m not much of an “advice giver” because I’ve only had PMR for 10 months now, therefore my life experience with this condition is limited (as is my scientific knowledge). What I do have is empathy and understanding with others who suffer a similar fate, especially the emotional toll it takes.
I sincerely hope we can get back to “business as usual” without more “casualties”. Each must make their own choice about the supports they access.
“Flouncers” should (but won’t) just leave quietly. The “cured” probably want to say thanks and farewell. Those who are struggling and just disappear are worrisome.
Can there be a designated thread for farewell posts, so they don’t disrupt the forum?
It doesn't work - the way the forum functions the designated thread would disappear down the list and no-one would remember it. There is already a long list of pinned posts - mostly on what are far more important topics.
This was a situation that now seems to have resolved, it was flouncers, and it will be forgotten in time. So those leaving because they are off pred or diagnosed with something else will post to say why and it won't be a problem.
I see that your posting name is Pam's Polywotsit - I am so pleased to see you once again.............now should I change my name to Pam's 'Giant Thingy' ? Oh, I forgot, three changes only.
Take care Kate and stay well. I will always be grateful for the first post ever 'a call to arms' PMR & GCA, on Patient info made by you - what I do not recall was your forum name when you reached out
I am not sure what is going on with this forum and changes being made. Hope it isn't like so many things these days and just politics. I do not post regularly but would like all to know how much I have appreciated this forum. Yes I have PMR since 2018 and this has been so helpful to me. Whatever the changes are I hope this forum continues for people like me who continue to learn about PMR and the journey others are on.
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Advice, please, from a new PMR, GCA.
The importance of knowing your 'normal' temperature
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2 months into Preds and noticeable increase in thirst?
