If we don't laugh, we'll cry....

Having PMR and/or GCA is NO laughing matter. They are both long term, cruel, serious illnesses that turn our lives upside down. It's obvious we all need support, advice, direction and the camaraderie a forum like this provides.

However, along with advice, serious conversation and empathetic social media "friends," we sometimes need to just let loose and LAUGH a bit. We need to laugh at ourselves, our illnesses, our families (who sometimes don't have a clue what we're going through), laugh at our doctors even! We need to laugh at our feeble attempts to taper, the side effects we experience, at our new and ABSURD LIVES and at all the rest!

Sometimes (because most of us exist mainly in this "on-line" world) we need to post photos of cats and plants; talk about the escapades of our Teddy Bears, be publicly proud of our grandchildren's achievements, and to just relax and let down our hair down a little!

We need NOT to remember we're sick and suffering. We need to feel "normal" and feel engaged in the activities of LIFE, not just in the activities of sickness.

A recent post (by a Moderator) intimated that members of another PMR/GCA site, use that forum to "complain about how horrible we are on here," call the Moderators of this site childish names, and are "hypocritical," when they come to this site for advice.

I feel obliged to say that "IF" (and I do not know) that Moderator was talking about the"MeWe PMR/GCA group, these allegations/beliefs are JUST NOT TRUE!

The MeWe site is open to anyone... You can join right now and see for yourself what's been said by the it's members, because everything is there and nothing is restricted or off limits.

The members of that site (of which I am one) do not NOT spend their time bashing or bad mouthing the Moderators or members of this site.

Yes, we have voiced our concerns about the fact that, we believe, this site has become rigid and unyielding. We have discussed how we feel that some Moderators, on this site, are overly harsh and controlling in their interpretation of the Guidelines... but WE HAVE NOT resorted to name calling, making false accusations about moderators/members or trying to undermine this site in any way!

We use that platform to laugh, joke, post photos and to voice our OPINIONS, which is something we cannot do here.

We love this site

We ALL owe a lot to this site.

...but yes, we are saddened that we can no longer be OURSELVES here and that we feel the voices of a "chosen few," have drowned out the rest of us and created an environment where many of us fear we will be publicly reprimanded (or even ostracised from the site) if we voice an opinion that does not align with that of the "elite."

I do not expect that this post will be allowed to stay up for very long... but I sincerely hope that those in administrative positions get to see it before it is taken down.

I also hope that everyone understands that the MeWe site was not set up as an "US or THEM," alternative it was just another place to go where we could blow off some steam, laugh, and post photos of our grandchildren, plants and Teddy Bears.

[PMRpro Ambassador]

I can only repeat that we are moderating the site in line with the desires of the board of PMRGCAuk - not, as you put it "a chosen few". Judging by the responses from other members a large majority appreciate that.

As the public face of the charity it must maintain certain standards as a support forum and unfortunately it was deemed that the way the forum was developing was detracting from that. While it does occupy a place in the world of social media, it has a particular purpose and that, it is felt by the charity, is not to provide the sort of gathering place the mewe site does. Originally I did point out and provided links to another PMRGCA forum which did offer the sort of platform you claim to have been seeking - no-one made any effort to join it.

Personally, I am disappointed that you felt the need to post this today - especially in view of a post yesterday asking for peace and goodwill.

[Hidden in reply to PMRpro]

I'm sorry you feel that way. Please know that I believe that I (and friends of mine) on another site were wrongly accused of things that are just not true and felt I needed to say something.

You are disappointed in me for not abiding to calls of "peace and good will" (which, by the way, I do not believe my post breaches in any way) ...but why, may I ask was it okay for that Moderator to wrongly accuse people of things that they did not do?

Was that post in the spirit of peace and good will?

[Hollyseden in reply to Hidden]

As a member of both HU and MeWe, I can only say that I'm surprised at all this. I certainly haven't seen all the alleged name calling being referred to and as you pointed out Melissa, anyone can go on MeWe and look for themselves. Maybe I have been missing something but I like both 'forums' HU for great advice and support and MeWe for pics of cats and grandchildren and Jeffrey's garden. I would hate people to think it's just for slagging people off. So sad if this nonsense has upset people, especially Mrs Nails who we all love. Peace and Goodwill to all on both places ❤️

[Pollymarierose19]

It's a fantastic site to feel normal, escape the illness, if only for awhile!

[Slowdown]

'If you're not outraged, you're not paying attention' is your profile banner and that seems to be a difference between this forum and the Me/We one. Vive la difference!

I, and I would guess most of us here, try not to feel outraged because usually we are powerless to do anything about whatever it is and that is damaging. Let's all cut our cloth according to how we wish to present ourselves in a medium we're comfortable with, and live with the difference. I'm glad your group is going well and you get from it what you need. I can see that you're outraged about slurs, I have no idea about what's been going on on your site so don't have an opinion, it's just upsetting to see this wearily familiar territory being repeated; that's what I mean about being damaging, not only to you but to those who want a quiet life! Can we just get on with being who we are, where we choose to be, without recriminations.

[Hidden in reply to Slowdown]

Well said. Thank you.

[GOOD_GRIEF]

Really, folks, isn't there enough drama in your lives?

Peace on earth.

Goodwill to all.

Or be quiet.

[Hidden]

Amen

[mlizscott]

Just stop it please.

[123mossie]

A merry and peaceful Christmas to you.