The More Poignant Side of our Daily Battles with PMR / GCA: What Matters Most in the Big Scheme of Things..?

[markbenjamin57]

Greetings All, whoever and wherever you are in the often confusing Physiologically and Psychologically complex world of understanding and coping with all things PMR and GCA.

First: In this more serious Post (I know, unusual for me) I will avoid making any allegedly humorous references to ‘You Lot’ since I realise that they might be interpreted by some as patronising, Head-master-ish and detached. But the truth is that I am also one of Us (PMRGCA) Lot too: and my often silly Humour is aimed at myself as much as anyone else.

So, ‘Here’s the Thing’ as some of our Transatlantic Friends might say:

Following the recent, er, let’s say ‘Turbulence’(?!) here around the thorny issue of forum content and relevance, I took a step-back and considered our local community issues in the wider context of what’s going on in the World at Large.

In this reflective period I also tried to imagine the immense pain and suffering of others outside of our PMRGCA community whose Lives (and those of their families / friends / work colleagues) have been suddenly ripped-apart by various, arguably more significant tragedies including being the innocent victims of acts of mindless and violent acts of Terrorism, Geographical disasters, unforeseen and suddenly Life-shortening illnesses (at whatever age from 6 to 60), Road / Rail and Air traffic accidents, and much more besides. Life can be cruel, and also a roll of the dice.

Of course, some of these tragedies might have affected us too.

One online / TV image that still haunts me is that of a beautiful, intelligent and stoic 8 year-old girl in (now - since 2013) war-torn Ukraine who, during the conflict there, politely asked a visiting European Journalist (q): “Please, just tell me where is best to hide when the bombs fall?”. I spent some time in Ukraine at that time and my heart is still breaking for her as I write this, some 5 years after seeing it.

For me, at least, all of these things (above) make my PMR Journey seem like a walk in the park - even on the tough days.

My Conclusion?

AlI I would say / ask is: please try to be tolerant and understanding of others here - whether you agree with their opinions, experiences and Communication Styles or not. In the Big Scheme of Life and with PMR / GCA, try to see the Bigger Picture: ‘Live and let Live’, move swiftly-on from any forum content that doesn’t engage or interest you (it's easy with a click of a mouse - we all have an equal choice!), and dip in-to or out-of whatever meets your needs at any time in this fantastic and increasingly diverse Social Health Community. There's no better place for a wealth of expertise and support of all kinds - take it from me.

Also: yep, get involved if you will: but try to express differing opinions with respect, humility and an open Heart and Mind. Some of Us Lot depend on and need this community as much for Emotional support / Social sharing as the more Medical stuff. To my mind, these diverse needs have equal value.

Of course, if you / we find any forum content offensive and / or breaking the HU community guidelines in any way, there are mechanisms to report it via the hard-pressed Admin team. They are a conscientious and caring Lot - and unpaid Volunteers too. How many of us would confidently take-on this kind of role?!

That’s it from me. I sincerely hope that this Post goes some way to helping to get back to Business as Usual here - whether On Topic, Off Topic (or hopefully a healthy balance somewhere in between!).

Either way, all best wishes and try to keep smiling on the PMR GCA Journey

‘Uncle’ MB

[coda123]

Brilliant dear MB, you speak from a good soul.

[markbenjamin57 in reply to coda123]

Thanks coda. Well, on the tough days (yes I still have them sometimes!) the above philosophy helps me to get things in perspective

[Daisychain12]

Darling Mark. I live in hope that you are right. I’m still in shock actually. But I agree. In a world of chaos can we please get along. Xxxxx

[markbenjamin57 in reply to Daisychain12]

Yep Linda, 'Life's too short..' etc x

[Estellemac]

Well said Mark and Tedski.

[markbenjamin57 in reply to Estellemac]

Ta Estelle, a joint effort. Tedski likes the occasional joint..

[Ljm12345]

Thank you

[markbenjamin57 in reply to Ljm12345]

All part of the service Lj..

[SheffieldJane]

Very sound thoughts Mark. Everything in the wider world seems volatile and prone to misunderstanding currently. I think we have just been a microcosm of the wider world. 🌸🌼🌺

[Slowdown in reply to SheffieldJane]

It's strange how a mood can translate from screen to reader - I think the tone and the feeling on our forum has altered over the last few days and we seem to be much more in harmony, don't you? Now for the rest of the world ...

[Blearyeyed in reply to Slowdown]

Totally agree , a little more harmony in the World , both around us and the wider World beyond , makes us all feel more human again , even when we aren't suffering with PMR. xx

[markbenjamin57 in reply to SheffieldJane]

Reminds me of something your son said Jane..

[SheffieldJane in reply to markbenjamin57]

Yes he does talk about the interconnectedness of everything. I guess I shared one of his Jungian pearls with you.🙏

[Soraya_PMR]

Your recollection of the Ukrainian girl is touching, and reminds me of a similar TV interview of another little girl, in some war torn country, can’t remember where! But this was 20ish years ago. She was a refugee, and the (rather patronising) interviewer said something like “I suppose you need to find a new home now?” She sagely replied “Oh no! I have a home! I just need somewhere for us to live!” Her ‘home’ was her family, wherever they were. Like you, this simple but tragic comment has lived with me for years.

There by the grace of God go we, and there’s always a small act of kindness we can offer that will brighten someone’s day, because there’s always somebody worse off than we are.

[Sandradsn in reply to Soraya_PMR]

That's so true Soraya

[markbenjamin57 in reply to Soraya_PMR]

So true Soraya...

[Longtimer]

Lovely thoughts, thanks for that....

[miss-philosopher]

That was a very nice post Mark well done. " ask is: please try to be tolerant and understanding of others here - whether you agree with their opinions " .... I just have to say that telling a person to " live and let live " for disagreeing in details of an other persons suggestions is neither fair nor tolerant of this persons different point of view. The tolerance should go both ways. Other than that I think you make good and positive conclutions. And personally and as a phsychologist I value both the medical and the emotional support people offer each other here on this site.

All the best.

Stella

[markbenjamin57 in reply to miss-philosopher]

Thanks Stella. I agree about tolerance going both ways.

[Purple-Owl]

All this kerfuffle and I must have completely missed the 'unpleasantness' you talk about, and I visit here several times most days. I have found only useful information, humour and sympathy here, but thank you for your excellent and moving post MarkBenjamin.

[markbenjamin57 in reply to Purple-Owl]

Thank you Purple-Owl. I know I usually write silly stuff here but I am occasionally moved to express my more reflective side when I see some of the tragedies going on around us.

[piglette]

I so agree. I also find the problems in Yemen quite heart rendering and so unnecessary. I give my heating allowance to such things as that each year. They desperately need our help.

[Blearyeyed in reply to piglette]

That's very kind of you , xxx

[Grants148]

Thankyou Mark,brilliant ,and so good to see Tedski !l have always found your posts very helpful ,informative and understanding of our illness,and l am looking forward to more posts in the future.l know we all have our problems with this illness ,some worse than others,but compared with the dreadful things that go on in the lives of many people in the world,we have a lot to be thankful for.All the very best Mark x

[markbenjamin57 in reply to Grants148]

Thank you too Patricia. Yep, things could always be worse x

[Daisychain12]

So glad you remain the sweet kind man you’ve always been despite the odd ( very odd) nasty remark. Don’t ever stop us seeing Ted. He is our mascot and you wour mentor xxxxx

[markbenjamin57 in reply to Daisychain12]

Well, thanks Linda, I try my best.

It might be that when ppl legitimately post / reply to strongly disagree with, or question a comment or opinion, they might appear to be very (too?) 'direct', depending on their Personality Type / Communication Style amongst other things (including frayed emotions due to struggling with all things PMR / GCA?!).

And, from the other side of the equation, some of us with similarly frayed emotions + differing (less direct?) PT's and Communication Styles might perceive that as 'nasty' or un-warranted from our perspective.

For me? I try to take everything in its stride and accept that we all have different circumstances and viewpoints. Either way, if a comment / reply is clearly offensive, inflammatory, and / or breaks the Community Guidelines around Respecting and Supporting others, there is a mechanism to report it.

As for Tedski? Out on the razzle again - what do you expect?!

MB x

[Blearyeyed]

I do wish you would stop putting Tedski in the freezer when you go off on a jaunt , I am sure he's suffering from a bit of frostbite.

Keep him out of the cold and active so you can give us all a bit of Uncle MB light hearted therapy for years to come.

It really helps to distract us from the woes of PMR.

Take care , Bee xx

[markbenjamin57 in reply to Blearyeyed]

Duugghhh. Ok then, I'll unearth him tomorrow and thaw him out in the microwave (without singeing him unduly). That should put the spring back in his step!

[Noosat]

My day goes into perspective when I have my morning shower, which is one of the pleasures of my day. I think, "I can do this while so many people in this world cannot obtain a glass of water." It humbles me. Remember, there is no more potable water in this world than there was in the beginning! I, also amuse myself by thinking, "I could be bathing in water that has gone through a dinosaurs intestine."

r

[Hidden]

Like others, I am so sad you are leaving. You have kept me going with your wonderful wit, wisdom and humour. Bill and Ben the PMR men was my first introduction to your great stories, in the early days of my journey with PMR. So many laugh out loud moments when reading your posts.

Good wishes to you and Tedski. This site will be the poorer without you both.

Bridget