Just a quick one as I'm away this week (meeting / giving a talk to the lovely Surrey Support Group) amongst other things. And, written with a heavy heart. Here goes:
Following Kate Gilbert's intervention re. the content of recent Posts and Threads - and the avalanche of replies ( + or -):
Just to say that I value this great forum equally for the serious (clinical / medical) stuff / information as much as the more Social / Off Piste banter. Like many, I simply dip in and out depending on what or who catches my attention and interest at any time.
Clearly, this is a very controversial and divisive topic (i.e. what is appropriate (or not) to talk about on this social health forum. My thoughts? Well, many of you know the answer
I don't plan to leave a fantastic social health community that I have tried to contribute to (both light heartedly and seriously) and gained from, hopefully in equal measure, for the past 3-ish years
That said, I have to be honest and confess to feeling a little nervous about continuing to pitch-in on The Lighter Side whilst there is so much division around the purpose of the forum.
There's an old saying: 'Sometimes better to step back and say / do nothing than take a firm stand either way'. So, that's what I'm going to do until the dust has settled. No-one is indispensable here - me especially. Either way, I'll be back sooner or later, once I have gathered my thoughts.
In the meantime, try to keep positive - and try not to get stressed about this topic / Kate's intervention - whichever side of the fence you sit on. Life is too short...
Best wishes
MB
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That is very sad Mark and what I feared would happen. Our great creative writers would not feel able to brighten our day, unselfconsciously. Personally your posts and others have served to brighten many a dismal, housebound day. For most of my time on the forum the balance between learning lots about PMR/GCA and it’s management and treatment, with the odd little friendly post and comedy riff was perfect.
I fear that I and others will follow. Thank you for being a little candle in the dark. 🌦
Thanks Jane. Sorry I'm a bit late replying as I was away last week and am only just catching up with all the, er, 'activity' (!) here. I've never had so many notifications of new posts and replies. Ohhhh...
As you might see, I'M BACK (in truth, I didn't really go away ). Why? Well, without taking sides in the On / Off Topic debate, I also think the balance is generally good here: and as a few others have said, we all have an equal choice as to what and who we follow (or not): or to report any content which breaks the community guidelines in whatever way. So, I would have more to lose than gain by opting out - and would also feel that I'd abandoned my five-and-a-half loyal Followers here
Ironically, I think this forum is a Victim of its own Success in that it has attracted such a great diversity of members, personality types, opinions and experiences - for better or worse. Clearly, it's recently been a huge headache for the volunteer Moderators but let's hope they find a way to get through it.
In the meantime, it's Business as Usual here for me at least..
'Fan Club' teesher? Are you totally Bonkers? Do you think I'm, er, George Clooney, HRH Prince Philip or some other kind of Celebrity? Ohh... give me strength
(But seriously..) Thanks, of course you can join the other (mainly silly) five and a half. Just go to my Profile page, find / click on the 'Follow MB' button, sit back and wait for some serious Bonkers-ness. There's also a link to my (mainly silly) book website on the PMRGCAuk website (see 'books about...) if you are seriously deranged.
But, be warned: do this at your peril and don't blame me if it all ends in tears..
Many thanks and good wishes - and try to keep smiling on the PMR GCA Journey
Sad about that....hope you return soon......I must say I am shocked by it all......many times I have been advised to my benefit, and others times lifted by your posts as well....just needed to say that, thank you....
Don't go far away for too long, I love your 'lighter side's posts - they are an important part of my illness management..... even when I fall for things like your car being stolen duh 🤣 I should rename myself as the village idiot with a mensa iq 🤡
You do what's right for you, take time to ponder but please don't leave altogether. Yes' we' have been 'guilty' of going off piste lately but there are two sides to the argument and one is it is good for our health but it isn't for those administrating. I know many will be thinking twice about what to write now but as long as we keep it short and to the point then ensuing conversations can continue via PM. I say that with tongue in cheek a little because inevitably we will divert. We have to strike a happy balance.
I hope that in the future if anyone has any kind of grievance that they address it directly with the person involved via PM and not via slanging match on a stage. We are not children! The administrators are there to help too but their hands were a little tied on this occasion as it was getting out of hand. If this site were to fold due to lack of volunteers as a result of how a very few behave then I for one would be devastated, it does more good than harm, we also need to feel comfortable from now on in these surroundings. What on earth must Newbies think?
This is a wonderful site and we need to keep it that way for the priceless advice we can share with one another. And yes Life is too Short....
I so agree. A year ago someone really upset me by a challenging post at a time when I was particularly vulnerable. I confronted them and they apologised and that was the end of the matter.
One can easily forget that when we are ill we can be over sensitive and how an innocent
True - I think many can see that happens and read it as was meant - think we're more aware of that than others. I get annoyed with myself if I misspell but really it only matters to us and we all do it from time to time. xxxx
An important point Edith - if I feel vulnerable, unless I'm seeking advice for that reason, I just sit back and read only until it passes. What I find is too is that as I read about everyone's problems it does sometimes help me count my blessings. xxxx
Ha ha! Jane I find that very funny - you must have been speaking with OH! He always tells me I'd have made a good headmistress! If they didn't do as they were told I'd want to give them 'what for' - not the way a 'lady' should behave... Think I had my fill managing staff in my hay day - 60+ - so thanks but no thanks - they need a younger model NOT on pred! xx
I have cancelled myself out for the opposite reasons. We would have a riot. I do tend to read most posts but would be feeble at saying er excuse me, no no no, unless there was bullying or deliberate nastiness.
I'm smiling now since, as you say, many initially (relatively) On Topic Posts do seem to meander off into Off Topic territory - with some hilarious (in my opinion) banter between the various contributors. And, dare I say it, even the Mods / forum Experts (dare I say Venerable Aunties?) join-in with the Fun side when appropriate. But that's ok with me as it demonstrates that we are all Human. And, of course, the Aunties are there like a flash when the chips are down and anyone here needs stern and urgent (if informal - according the the forum guidelines) medical advice and support.
My only conundrum re. Newbies is that quite a few report that they appreciate the forum for its informality, warmth and social banter / support as much as the important but often more serious clinical / medical content. That said, we can't know about those who don't...
Oh well, I'm sure this topic will run and run - but hopefully not continue to dominate the main business of PMR and GCA. Maybe just a symptom of Growing Pains in an increasingly large and diverse internet Social / Health Community? We'll see..
My brain hurts now. Wine open. Tedski in the oven roasting slowly after being thawed out from 6 days in the freezer. I think I'll have him with chips and asparagus. Nice...
Re Newbies - when I first joined something was kicking off which I hadn’t read but left me wondering what had I come into. I stood it out and found helpful advice outweighed my doubts.
Can you believe I’ve only been a member for 15 months - 3 1/2 years after diagnosis I joined. Seems far longer.
Can’t believe you’re talking about Tedski like that! I’ll be giving him Childline’s number when I next see him!! T.
I, too, remember joining the forum and not knowing who was who, where I stood (in terms of the social context / member hierarchy): and nervously posting my first humorous (or maybe delirious?) ramblings, wondering if I would get chucked off the forum for being TOO light hearted. But I took a chance and the rest is history, as you probably know.
As for Tedski? PLEASE DON'T GO OFF TOPIC!!! Too late for Childline (or Tedskiline). Yum yum, he's sizzling nicely now...
Did I once say that I (and Tedski) live at Benjamin Mansions in WSM UK? Sorry, it must have been a Pred Head induced typo. I meant: The Manse, Isle of Mull, just off the north west coast of Orkney (turn left at Inverness and take the nearest ferry - only a couple of days' sailing, weather permitting).
That should keep me and my hostage Tedski safe from You Lot - not to mention the Paparazzi...
Everyone has a choice about what they read. Sometimes I have a serious search for directly related issues and would not have survived without the essential advice from the likes of PMRPRO and DL , other times to share and welcome frightened new comers. Sometimes I read The Lighter Side and think “ what is he up to now?”
I also feel I have friends along this hateful journey and that is invaluable
Let’s not forget what brings us together. As they say in AA and Alanon “Take what you like and Leave the Rest “
Hi 'uncle' MB, does it help when we ask you to stay? Do you need time considering and prefer to be left alone. For me you are part of a family that is very supportive and you will be missed. Somewhere Kate's tells us to have a life in normal life if I understand correctly, but the forum is an Important part of my life nowadays. Whatever you choose I wish you the very best.
Is that a threat or a promise Mark??!!! I sincerely hope it's the latter - have a good think and then Come Back. And anyway, have you discussed all this with Tedski - as my granddaughter used to say (when she was little) it's not all about you, you know! Take care Sue
Ha Sue - careful what you wish for... :-D. (BTW I'm already back, can't stay away for long from a community that I gain a lot from, as well as contributing to).
My thoughts Jane, for better or worse: probably a symptom of a growing and increasingly diverse 'virtual' community but with a struggling Leadership of Volunteers who are struggling to manage the complexities of it? But only my thoughts..
Away and busy until Friday - but back on the case at the weekend
Taking time for a breather and to let the dust settle isn't a bad idea. many here are feeling a bit of kilter and we need to regain ourselves. Strange, but it's a bit like a flare, we need to deal with it before normality can return.
We are talking of a couple of posts, with a lot of comments. Don't forget all the other posts that have had some really nice comments and have helped many people feel a little better about how they feel.
You must do what you want to do. In a month or two, it will all seem very different, and just a blip on the wheel of progress.
As you were diagnosed roughly the same time as me, I have followed your progress with the preds, and I am curious to know at what point you are now. So please don't stop posting on the PMR issues. You also give a lot of excellent advice to newly diagnosed people, and that would be sorely missed if you do stay away for a while.
Mark. If you leave I will be fricken heartbroken. No. No. No. please. I can’t bear it. You are one of the cornerstones and this is turning into an avalanche of horror. I beg you. Stay. We need you SO SO MUCH. 😭😭😭😭😭😭😭😭❤️❤️❤️❤️❤️❤️❤️❤️
Daisy (Linda?). Don't worry: despite the recent controversy here, I will still be around in one form or another. Wait and see - and try to keep positive in the meantime x
I agree with your reponse Mark. One thing I think is being forgotten is to be found in the side effects listed in the instruction sheet accompanying my Prednisolone tablets. Emotional effects. Even suicidal thoughts. After all, naturally produced adrenaline, which Prednisone replaces, is responsible for the famous Fight or Flight syndrome. Up to now I'm sure this site has been a great help to those dealing with emotional problems that a purely clinical site would ignore.
It's cortisol which pred replaces. I think pred may suppress adrenal function generally but doesn't compensate for the other things, but I don't really know.
Sorry Heron I was not quite accurate. To quote from the Mayo Clinic site: in stressful situations ' your hypothalamus, a tiny region at the base of your brain, sets off an alarm system in your body. Through a combination of nerve and hormonal signals, this system prompts your adrenal glands, located atop your kidneys, to release a surge of hormones, including adrenaline and cortisol. ... Adrenaline increases your heart rate, elevates your blood pressure and boosts energy supplies. Cortisol, the primary stress hormone, increases sugars (glucose) in the bloodstream, enhances your brain's use of glucose and increases the availability of substances that repair tissues.'
I gather adrenaline initiates the short term Fight or Flight syndrome, but cortisol controls the longer term stress response, and it's that which Pred replaces. That's probably why depression and possible suicidal thoughts are prominently listed as side effects of my pills.
Your contriutions "On the Lighter Side" I'm sure are beneficial to many in lifting spirits so can be considered as supportive (purely my personal opinion and observation)
Hi Mark, I'm feeling the same as you, just going to take a step back and let the dust settle. I love this site with all the commeraderie and advice, I would hate to see it fail. I guess we all need to just breathe and see where everything settles. Take care, I selfishly do hope to see your writings here again soon. Kitty
I really enjoy your posts Mark ,it is sad that complaints made by some people can spoil the lighter side of our interactions.PMR/GCA can be hard to cope with and there is always good advice to be found here,but it really can make a huge difference as to how we cope with those health issues when we can sometimes mention other things that are part of our lives,it adds a much needed warmth to the forum..l shall miss that so much if that will no longer be allowed.I always appreciated your knowledge of our illness,but just as much The humourous ramblings and of course the lovable rogue Tedski.A big Thankyou Mark for making me laugh and making everything feel much brighter and easier to cope with.
Thanks Patricia. All I can say is: 'Live and let Live' - as a few of Us PMR GCA Lot have also.
I agree: the more sociable / light-hearted / emotionally sharing side can be as (or more?) important for some of us than the medical side / info in the coping process of our types of illnesses. Either way, we all have an equal choice as to whether to engage and follow (or by-pass) a particular Post, Member or Topic. What could be more Democratic than that?!
After the recent Forum Storm, I'm still here for better or worse. And Tedski too. Be careful what you wish for...
You are a very very good person and high quality and a big heart....new at the forum I appreciated your posts and sharing. Thank you and all the best. Lea
Do what you feel you must do Mark. Your presence will be missed.
As a support group developer/facilitator I recognize the inherent challenges that exist for this online forum. Our numbers are huge, as is our diversity. Our communications are via typed posts instead of organic conversations. We all have different needs and opinions. These factors can stand in the way of empathy, compassion and healing.
I feel the volunteer moderators on here would benefit from some formal group facilitation training. It might also help if “the rules” should pop up every time members login (as was done with a former online PTSD group I belonged to). Just my thoughts.
Tolerance, safety, and respect are key.
I’d love if you could come to Canada to present, and bring along some other forum members. Do take good care and hope to see you again.
Thanks PMRCanada. Apologies for this late reply as I'm just catching up after a busy week away.
As you might see, I haven't stayed away for long (see latest Post): but I must admit that last week's turbulence on the forum was a bit disconcerting, and it really did make me wonder if the mainly (but not always) silly stuff wot I write here has had its day if the forum rules are changing.
I agree with what you say in para 3, although probably best not to get into another discussion that might raise hackles on all sides and cause stress for many here. Your background sounds interesting and I've done some similar facilitation work in the past. It would be good to compare notes - but not on the public part of the forum for various reasons! ;-).
Wow, what a prospect! MB doing a Gig in Canada to the Transatlantic PMRGCA Lot! If money were no object I'd be there in a flash. But where there's a will, there's a way. Let's not rule it out? Maybe (just maybe) a meeting of UK and Canadian members is something that could be arranged in one way or another?
Thanks again for your kindness and support. As you say: Tolerance, Safety and Respect...
Hi Mark- I have purposely taken a step back with what has been quite a difficult time on the site. I think we are here to support, encourage each other, ask questions and sometimes sound off when we are going through a difficult patch because we have a common understanding of the difficulties that we are each experiencing. We have also managed in the past to have a small proportion of light relief amongst the more difficult matters. I appreciate therefore that you need to perhaps take a step back and wait until the dust settles. I think you have provided some very funny light relief and also have given some real support and encouragement to others. The result of this has been your book and your talks at various groups. So I am sure you will have the wisdom to carry on supporting, encouraging and providing a proportion of light relief in the future. 😀👍
Thanks Jackie - sorry for this late reply but I'm just catching up after a busy week away (see latest Post). I agree about stepping back, but on reflection I couldn't stay away for long given that You Lot are always there to give words of encouragement to me too. Either that or just to humour me
It seems that the Jury's out on what constitutes On / Off Topic and / or whether we should only Post about PMR / GCA medical stuff. Striking the right balance (whatever that is!) must be a bit of a nightmare for Admin. That said, it seems that content on The Lighter Side (not necessarily my ramblings) does have some therapeutic value for quite a few people here...
From my point of view this is my only support group. There is another member of the extended family here with PMR but I'm his support group. He doesn't really think to ask me how I am! And he has multiple other health problems which mercifully I am still spared.
So I appreciate most, if not all, of what is posted, including the things when help me know others better as individuals. But I think we all need to make some effort to link our posts to PMR/GCA to some extent even if it seems a bit tenuous. It's such a varied and idiosyncratic disease it really can't be treated quite the same way as an illness which has a more defined end point.
I tend to agree on your second point Heron. I guess the only question for some of Us Lot / the Moderators is: how tenuous?! Ohh.. better not pour fuel on the fire
We ask a question. For example, "How does this piece of news I want to share fit in with my experience of PMR/GCA/pred?" Or, "Will this information or news I have help someone else?"
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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