The Lighter Side of PMR GCA: ’Sixty-Two Today, Da... - PMRGCAuk

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The Lighter Side of PMR GCA: ’Sixty-Two Today, Da de Da de Da…’. Emerging from the DF - and Back to 'Business as Usual'..? ;-)

markbenjamin57 profile image
149 Replies

First: WARNING! This Post is an intentionally and unashamedly Light Hearted one - and in my best effort to link some Daft Humour to the PMR GCA Journey. If you find my Ramblings too Off Topic, Obscure or Lengthly: to be honest, I don’t blame you for moving swiftly-on. As they say: 'Life is too short'.

But if any of You Lot are Bored, Pred-Addled, Brain Fogged, suffering from Insomnia or Curious enough to read-on, all I will say is ‘Gawd ‘Elp You’. You have been warned…

INSTRUCTIONS: to get the best from this Silly Post: the first part is better sung in a rhythmic, joyful style - if you can raise the energy. After that, you are on your own. Sorry..

Here goes...

“Sixty-Two today, Sixty-Two today!

I’ve got the key of the door!

Never been Sixty-Two before!

WOT? YIKES! SIXTY-TWO?!!

AND WITH PMR / DF / PRED HEAD / BRAIN FOG.

WHAT THE [deleted expletive]…..?!!!”

Ok, Yep. It’s my Birthday again. Strange - it happens every year on about the same date whether I plan it or not. And.. having ‘celebrated’ my 3rd year of PMR. Hummpphh, but I suppose things could be worse?

But hang on a minute. SIXTY-TWO? What, ME? And 3-ish years into PMR with no Instructions on the packet? OMG! If someone had warned me that I would live this long I’d have looked after myself better. Worse still, a third of my Life is over already. Oh well, I can’t escape Reality - although I always try my best.

Either way, I have realised that a Sense of Denial can be a positive thing, despite what my Therapist tells me. That’s my Theory and I’m sticking to it.

For better or worse, here’s ‘Uncle’ MB’s 10-Point BIG (62nd) PMR Birthday Plan:

1.Embark in the Limo from MB Mansions in WSM to my retired Twister’s place in Coastal Dorset. Avoid getting caught by 17 speed cameras en route* courtesy of James Bond-style false number plates (*only joking: Slower is always Safer - especially with PMR / GCA / the Meds and on our busy UK roads - ‘You know it makes Sense’ etc).

2.Arrive at Twister’s place. Open Red Relaxing Stuff (note: never before 7 p.m.). Eat. Eat again later. Watch the, er, enthralling UK Bre*it news on the BBC. Yawn a lot. Get Brain Fog. Yawn some more. Lose the will. Turn-in.

3.Awake at 03.45 wondering where I am, and who I am (as usual). Blame the Preds.

4.Repeat above process at 30 minute intervals with a series of Surreal / Existential / Illusory / Crazy dreams in between*.

(*For me, the usual PMR / Pred related dream stuff, e.g: Samba dancing with 27 giant Nuns whilst cunningly disguised as a Chocolate Biscuit, walking on Mars upside down using Lego and sticky tape, playing Squash with HM The Queen (‘Herself’ has a lightening backhand volley!), winning the Artichoke Olympics and generally letting my PMR / Pred addled Mind do some quiet, sub-conscious, er, ‘work’ in the background. Professor Carl Jung would be proud…

5.Finally GET-UP at 08.30-ish to the soothing sounds of the latest Bre*it News on BBC Radio 4.

6.Put best Big Birthday clothes-on back to front and upside down. Blame the Preds and Bre*it for ‘Wardrobe Malfunction’. (Note: not a pretty sight - and not advised to imagine for those of you with a nervous disposition).

7.Re-align clothing before appearing for breakfast (Twister is confused enough already).

8.Gulp-down current, obligatory 2mg Pred whilst cursing under breath (nothing new).

9.Get busy doing BIG (62-year-old - Ha!) BOYS’ Stuff including semi re-building Twister’s house, impersonating a Police Officer and diverting the local traffic, and staring menacingly at nosey neighbours. Nice work if you can get it..

10.Enjoy Big Birthday evening with Family and Friends (yes, I have a few, believe it or not). Laugh, Relax, Chill, and look forward to a more Positive year ahead - despite my Life Changing PMR Journey.

Conclusion? (the more seriously On Topic bit):

Yep, PMR and GCA are Life Changing illnesses: but they don’t necessarily mean that Life has to stop completely. To Survive, we just have to ration our physical and mental energy, do our best in Lifestyle terms, focus on what gives us Pleasure (as opposed to Stress), and try to adopt a coping Philosophy (Strategy?) of Rolling With It during the tough bits. Beyond that, we are probably in the hands of Destiny as much as the Vagaries of our types of illnesses. Oh well…

So, Folks: you might guess that I’ll be tied-up this weekend and not on the Airwaves so much (‘Good news!’, I hear some of you saying). On the downside: I’ll be (or at least hope to be) back for Business as Usual next week (I can hear the groans of disappointment already).

Either way: enjoy your weekend, try to keep smiling on the PMR GCA Journey, and remember: ‘This, too, will Pass’.

Best start packing for the BIG (62nd) BIRTHDAY weekend away. I’ve allowed 10 hours including a few (dozen) Naps in between. Now THAT’s what I call Pacing - I think I'm getting the hang of it after 3 years. Hey Ho! ;-) :-D

‘Uncle’ MB

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markbenjamin57
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149 Replies
HeronNS profile image
HeronNS

Many Happy Returns - and if PMR lasts roughly six years, you're halfway there already!

🍰🍺🎈

markbenjamin57 profile image
markbenjamin57 in reply to HeronNS

Thanks Heron - I'll drink to that (hic) ;-) :-D

Nuff1 profile image
Nuff1

Many Happies

markbenjamin57 profile image
markbenjamin57 in reply to Nuff1

Ta Nuff ;-)

pollymarierose profile image
pollymarierose

Happy Birthday! I enjoy your writing!

markbenjamin57 profile image
markbenjamin57 in reply to pollymarierose

Thank you polly - nice to share some Fun in between the tough / more serious stuff here ;-) :-)

Grants148 profile image
Grants148

Happy Birthday Mark,sixty two years young !Have a lovely weekend,l would not mind being Sixty two again....... l did not have PMR then x.

markbenjamin57 profile image
markbenjamin57 in reply to Grants148

Ha Pat! 'Young?' Oh, ok then, if you say so... :-)

HeronNS profile image
HeronNS

A challenge - can every reply to this post have some comment or a few words related to PMR/GCA?

markbenjamin57 profile image
markbenjamin57 in reply to HeronNS

Let's see?! :-D

allykat profile image
allykat

Happy Birthday Mark. I think you are catching up to me. Have a great weekend!

markbenjamin57 profile image
markbenjamin57 in reply to allykat

Ta Kat, all to go for - and suddenly feeling massively, inexplicably better today after weeks of DF, and despite not changing anything in terms of the Meds / Routine / Lifestyle etc. Hey Ho!

MhairiP profile image
MhairiP

Crickey - you're even older than me! 😂 Have a great weekend away and a very happy birthday despite PMR/GCA (I'm rising to HeronNS's challenge!).

markbenjamin57 profile image
markbenjamin57 in reply to MhairiP

Thanks Mhairi - I'll try to ;-)

pmrkitty profile image
pmrkitty in reply to markbenjamin57

Crikey! I'm even older than you and wIth PMR etc I'm 2 years into it. I would love to see your back hand in tennis playing tennis with PMR, that could prove tho be quite funny. Anyway Happy Anniversary on your PMR journey and Happy whatever else you may be celebrating. I think this post may qualify? And if not...???? It. You can use your PMR brain to fill in the blanks. (Formerly known as cathere12342)

markbenjamin57 profile image
markbenjamin57 in reply to pmrkitty

Ahh, all's clear now! But: PMR? Brain? Fiil-in the blanks? Ohhh...!! :-D

SheffieldJane profile image
SheffieldJane

You’ve just excelled yourself. Wonderfully cheering. Many happy returns! Thanks for the top tips. Laughing aloud! 😉 🎈

markbenjamin57 profile image
markbenjamin57 in reply to SheffieldJane

Thanks J

Well, and as you know, I was in 2 (3.. 10...?) minds about posting anything here which might be perceived to be 'Off Topic' - or on the verges of such. But then I thought: S*d it: if it helps a few of Us Lot to smile, so what?

So sorry that it made you LOL though. A sure sign of Bonkers-ness, and I sincerely hope that you recover (or maybe not - better still?). ;-) :-D

MB x

loopeyloo72 profile image
loopeyloo72

Happy Birthday, Mark! We love your silly humour - it brightens our day.

markbenjamin57 profile image
markbenjamin57 in reply to loopeyloo72

Thanks loopeyloo. But.. laughing at my silly stuff..? The first sign of Terminal Bonkers-ness? All I can say is that you have my greatest sympathies.. ;-) :-D

karools16 profile image
karools16

Happy birthday Mark

markbenjamin57 profile image
markbenjamin57 in reply to karools16

Ta karools. 'On, and Forwards' (or is it Sideways..?) :-)

markbenjamin57 profile image
markbenjamin57

Ha, Sandra! 'Young Mark'?! The cheque's in the post ;-) :-D

markbenjamin57 profile image
markbenjamin57

:-D

pmrkitty profile image
pmrkitty

By the way, the blanks to fill in on my last post were darn it! Had some of you going didn't I?

CT-5012 profile image
CT-5012

Happy Birthday 🥳 are you tied up because you no longer have the DF? 😂

Marilyn1959 profile image
Marilyn1959

Hope you have a lovely celebratory weekend Mark enjoying the company and of course the wine!

GOOD_GRIEF profile image
GOOD_GRIEF

Sláinte.

Oh, you broke the new birthday post rule...

And the Bre*it rule...

Good for you!

Polywotsit profile image
PolywotsitPMRGCAuk team member in reply to GOOD_GRIEF

Thanks. You've made my day.

GOOD_GRIEF profile image
GOOD_GRIEF in reply to Polywotsit

I hope it made you smile, Kate.

If not, then I'm sorry.

PMRCanada profile image
PMRCanada

Happy bday MB. Sounds like you have a lovely celebratory weekend planned. Enjoy your special day.

markbenjamin57 profile image
markbenjamin57 in reply to PMRCanada

Thanks Leslie, all went well. I did some serious physical work over the weekend, enjoyed some nice social activities and have come through things without too much DF (Deathly Fatigue) afterwards. On, and Forwards... ;-)

Baileyw06 profile image
Baileyw06

Happy Birthday and hope your PMR journey goes well 🎂

markbenjamin57 profile image
markbenjamin57 in reply to Baileyw06

Thank you Bailey: a busy and active w/end but still on my feet, not too wiped-out energy-wise and smiling (that's the main thing with PMR and GCA?) ;-)

Happy Birthday. We dream of 2mg well gone you - 1 mg by 63😀?

markbenjamin57 profile image
markbenjamin57 in reply to

Greetings Karey :-). Yep, getting to 2 mgpd Pred has taken a long time to achieve after many ups and downs during the past 3-ish years: but it's all going the right way. I'll hold you to it: 1 mgpd Pred (or less / Zero?!) by this time next year. And hopefully for you too...? ;-)

in reply to markbenjamin57

Fingers crossed. I’m alternating days 4.5 / 4 for the next couple of weeks. I’m tired but no pain.... let’s see 😊 (from 5 btw)

markbenjamin57 profile image
markbenjamin57 in reply to

Slowly does it with the reductions and try to stay positive. :-)

Blackcat1M profile image
Blackcat1M

Happy birthday to you. Not forgot about the book, still feeling ruff with falling, and headaches, earaches, etc etc enough pmr problems , enough your weekend

markbenjamin57 profile image
markbenjamin57 in reply to Blackcat1M

Greetings Blackcat. Many thanks, all went to plan! I know the PMR / GCA journey is tough, but try to keep positive on the way. You are in very good company here.. ;-)

JulieR2 profile image
JulieR2

Have a very enjoyable birthday Mark. Sounds like you have it all in control. Well the birthday if not the PMR😂

markbenjamin57 profile image
markbenjamin57 in reply to JulieR2

Thanks J. Well, all went well and to plan: Much DIY for the Twis, some socialising and a break from the recent politics here (Whoops - didn't say that!). Yep, not feeling too wiped-out DF-wise afterwards, so it's On and Forwards.. ;-)

Oxford8 profile image
Oxford8

Happy Birthday MB,

Have a great weekend. 🎂🎁🍰

Thanks for the laughter. Each giggle is as good as 1mg of pred in our PMR led lives. (See what I did there HeronNS) . 🌷❤️

markbenjamin57 profile image
markbenjamin57 in reply to Oxford8

Thank you Christine. Ohh, I wish - 'Giggles Vs. Pred / Therapeutic Equivalent Value? Nice thought, it could be an 'Earner' in MB terms :-D

Choco-Holic profile image
Choco-Holic

Happy Birthday... have a great weekend. Love the post 😊

markbenjamin57 profile image
markbenjamin57 in reply to Choco-Holic

Greetings Choco :-) Thanks for your lovely msg - Ahh, Bless!

On the downside: all I can say is that if you liked (or even laughed at?) my Post you are probably on the slippery slope to terminal (PMR / Pred induced?) Bonkers-ness and there is probably No Hope for you!!!

(Only joking - keep smiling on the journey) ;-)

MB

York54 profile image
York54

Felicitations Mark!!😁😁😁😁

markbenjamin57 profile image
markbenjamin57 in reply to York54

Yay, thanks York! :-)

Gaijin profile image
Gaijin

😂😂

Happy Birthday, hope you have an unforgettable one!

markbenjamin57 profile image
markbenjamin57 in reply to Gaijin

Thanks Gaijin. Unfortunately I've forgotten about it already (due to Brain Fog and Pred Head...) HA!!! ;-) :-D

Gaijin profile image
Gaijin in reply to markbenjamin57

😂😂😂😂

Liskeard profile image
Liskeard

Thanks for this Mark, literally made me laugh out loud! Surely a sign that the PMR has affected me more than physically? We all need a bit of silliness in our lives.

BW Iona

markbenjamin57 profile image
markbenjamin57 in reply to Liskeard

Greetings Iona :-). Apologies for not getting back to you sooner after a busy (not to be mentioned) weekend -Ha! I agree, Humour and Laughter can be amongst the best therapies in helping to cope with PMR and GCA.. ;-)

Longtimer profile image
Longtimer

Enjoy whatever you do, and I look forward to the "report" when you get back...I need cheering up!....

markbenjamin57 profile image
markbenjamin57 in reply to Longtimer

Thanks Lt, and You bet: A FULL and COMPREHENSIVE POST-BD / PMR / PRED / SYMPTOMS Related REPORT - as soon as I can muster the energy ;-) :D

I’m confused. Following the recent debacle, I thought Kate Gilbert posted a ‘no more birthday threads’ please. And that a separate pinned thread for birthdays was set up. Has that changed?

Nothing personal, but is this just a test flout? If so, it shows the ‘rules’ are selective. Very offputting.

Dovelady profile image
Dovelady in reply to

Looks like some people consider themselves untouchable , it makes very uncomfortable reading, that’s just the title , can’t be bothered with reading it , but it is totally disrespectful to the Admin and Mods who do such a good job. The guidelines, rules whatever are there for all .

in reply to Dovelady

I think that’s the issue Dovelady. The guidelines aren’t there for all.

I thought the forum was pretty good at self regulating, but now feel it’s not only divisive, but polarising. I’m a relative newcomer and I’ve only posted about PMR related issues. I realised many posters ‘knew’ one another. Some through physical meetings and others from posting regularly. That’s fair enough.

There’s a chat function for those who want to exchange personal stuff and I thought Admin was clear that posts should be focussed. This is indisputably a personal birthday thread.

It’s divisive; Im clearly a minority that finds it offensive. I feel like an intruder, I don’t feel welcome and frankly, I don’t like being lumped as a ‘You Lot’ by someone I don’t know. I feel patronised.

So I’m done here. All the best on your journey.

Dovelady profile image
Dovelady in reply to

I really hope that this issue is sorted , I’m sorry you feel that HU is no longer for you, but I don’t think we/ you are in a minority. Have you thought to contact Kate with your serious concerns ?

in reply to Dovelady

I don’t see the point in contacting Kate Gilbert. I thought she made the playing field quite clear recently; keep the posts about (mainly) about PMR/GCA, no more birthday threads etc etc.

What I find particularly disappointing is that this thread appears to say ‘ there may be guidelines, but they don’t apply to me’. For me, if there are guidelines, they apply to all...and trust me, I’m not afraid to push boundaries.

But the fact that the thread continues to grow seems to confirm that it’s ok to ignore any and all admin requests. But only as a favoured member. That’s the message I’m getting.

Dovelady profile image
Dovelady in reply to

I really would contact Kate.

PMRpro profile image
PMRproAmbassador in reply to

If you read the post to the end - there IS a perfectly reasonable PMRGCA-related thought for the week...

Of course - you may not like having to plough through to the end of a 3 act drama to find it.

in reply to PMRpro

Hi, It was specifically pointed out to me (by an Admin) (in relation to some of my posts) that newcomers, get confused & put off when they see long, detailed, convoluted posts, with lots of related/unrelated comments. So after yesterday's Birthday discussion, and Kate's, "Please No More Birthday Threads," post, I can only imagine that newcomers & old timers alike, coming back today, might be even more confused?

So, the "trick" is to simply (and cleverly) infuse a "perfectly reasonable" amount PMR/GCA "cream filling," into a NON-PMR/GCA "donut? "

Got it!

PMRpro profile image
PMRproAmbassador in reply to

I don't understand why you appear to be blaming me for a plain statement. If it is any consolation to you I only read through the 3-act drama to see if there was any redemption at the end. It took me quite a while...

in reply to PMRpro

Noooo, I am not blaming anyone!!!

I thought I was being funny (as that is what others seem to be doing; adding a PMR/GCA reference!) to their post...

Sorry, it must be the codeine, my apologies!

in reply to PMRpro

Sorry, but I just don’t ‘get’ the alleged humour and have little interest in tedski or villas etc. That’s not the point of this forum and it’s little wonder that newcomers are put offb

GOOD_GRIEF profile image
GOOD_GRIEF in reply to

That seems odd to me because it was the light heartedness and friendly, sympathetic audience mixed in with the cold hard facts that attracted me to this site when I first came upon it, and kept me coming back. It gave me hope that I might survive with my "self" intact, and might also weather this storm in my body with some grace and wit.

in reply to GOOD_GRIEF

I agree that it’s good to be lighthearted. But that’s not the point.

The forum is about individuals and health support. No one is stronger, greater or better than anyone else. We’re all the the same horrible boat, albeit at different points in the journey. I’ve found posters sympathetic, respectful and helpful in the short time I’ve been here.

There was a reasoned and specific request by admin not to post birthday threads. This thread is a kick in the face to that request; why the exception? It’s divisive and contentious and now it’s creating I’ll feeling.

GOOD_GRIEF profile image
GOOD_GRIEF in reply to

I'm sorry it's creating ill feelings for you.

I suggest you continue to skip over Uncle MB's posts since they irritate you so, which would be as far from Mark's intentions as is possible.

Meanwhile, it is necessary for the rest of us to be deprived of the much appreciated diversion he offers?

in reply to GOOD_GRIEF

Yes, because it’s arrogant and rude to blatantly ignore a request not to post birthday threads. That’s the issue. It’s not a chat forum.

GOOD_GRIEF profile image
GOOD_GRIEF in reply to

That's your opinion and you're entitled to it.

But I see no reason for you to start throwing insults at anyone.

As I said, if this is agitating you, just skip the thread. It's just one small box on your post screen. It will soon drop off the screen altogether and you'll never see it again unless you go searching for it.

Polywotsit profile image
PolywotsitPMRGCAuk team member in reply to

Thanks for your post phoenix22. It's interesting, isn't it?

in reply to Polywotsit

I find it more insulting and divisive than interesting.

Clearly some members are bigger than others. Or maybe not and that’s the problem.

GOOD_GRIEF profile image
GOOD_GRIEF in reply to

Who's insulted you?

Why do you think there are some members of the community "bigger" than others?

I'm not even from the UK, and I've been treated with nothing but respect and friendliness (except for a couple of trolls who soon vanished into wherever trolls go).

in reply to GOOD_GRIEF

I have nothing further to say. I’ve made my point and don’t feel inclined to defend my feelings.

cezzie5 profile image
cezzie5

Hope you had a wonderful birthday and thanks for such am uplifting post. 🎀🎁💕

markbenjamin57 profile image
markbenjamin57 in reply to cezzie5

Thank you cezzie. I appreciate that my often (but not always) 'humorous' (ok, that's a matter of opinion) posts don't appeal to everyone. But they are usually intended to link in with a PMR related theme, and I hope the header 'The Lighter Side' signposts just that. And, of course, we all have an equal choice around what content we follow / get involved with or pass quietly-by. I do that all the time with posts that aren't interesting or relevant to me.

Grants148 profile image
Grants148

We all love your posts Mark x

markbenjamin57 profile image
markbenjamin57 in reply to Grants148

Thanks Pat ;-) x

Jackoh profile image
Jackoh

Happy birthday Mark!! Well done for mixing birthday news with PMRGCA news!! 😜2 mg eh !! Beats my 14mg any day!! Nice that you are finally adjusting and pacing. As you say it’s only taken 3 years. It’s obvious like me you are a quick learner!! Have a lovely weekend. 😀👍

markbenjamin57 profile image
markbenjamin57 in reply to Jackoh

Ta Jackie :-). Well, 2 mgpd isn't bad all considered. But I'm always aware of a catch-up period of DF after a busy time, so I'm not quite out of the woods yet!

Marymon profile image
Marymon

Happy Returns Mark,

I say ‘Returns’ as sounds as if you will have fun packed day.

Monica 🍷🍷

markbenjamin57 profile image
markbenjamin57 in reply to Marymon

Thanks Monica. Yep, a busy weekend but a productive one. And not too fatigued afterwards. Well, not yet anyway.. ;-)

Daisychain12 profile image
Daisychain12

Hello dear man!! Very very warm wishes to you. I hope you continue to overcome PMR with your bravery and elegantly expressed humour xxxxx

markbenjamin57 profile image
markbenjamin57 in reply to Daisychain12

Thanks Linda. I try my best.... ;-)

Footfairy-1 profile image
Footfairy-1

Happy birthday Mark. Congratulations on the 2mg Pred. Hope you have a great time in Dorset (I'm jealous ☹️). Sounds like you've sorted the pacing. I keep thinking about your dreams and lol, getting some strange looks, but what's new when you have PMR 😂🍷🍷🍷

markbenjamin57 profile image
markbenjamin57 in reply to Footfairy-1

Thanks Footfairy :-) Yep, 2 mg isn't bad all considered. Slowly does-it to Zero (eventually). I'm used to getting strange looks too ;-) :-D

pmrgcavictim profile image
pmrgcavictim

Happy Birthday favourite Uncle. Trevor.

markbenjamin57 profile image
markbenjamin57 in reply to pmrgcavictim

Many thanks Trevor :-)

Happy Happy Birthday Mark!!! All the best! Enjoy 62 while it lasts... the years start to go even faster now!!!!

I apologise in advance, but I'm wondering why you have not been told that this post is "not appropriate?" Or asked to turn off "comments." Or asked to delete it? Or had it deleted for you? (These are not questions for YOU, especially not on your B'Day!)

When a post (with a link to an article in the guardian about Cleaning/Germs) was put up yesterday, it received 23 replies. That member was not asked to turn off comments, however the guidelines state links to blogs (even blogs related to PMR/GCA) must turn off HU comments. What's the difference?

Another post yesterday (indirectly related to PMR/GCA) about Pred forgetfulness, received 66 responses; non of which ( I don't believe) were related to Pred, forgetfulness or PMR/GCA.

I know we all want craziness to end, and I don't want to be the one "picking off the scab," but is there some mystical double standard here, that I am not aware of?

Why are some Birthday posts okay and others are not? Why do some people have to turn off comments and others do not.

If you recall, it was MY membership that was restricted to "read only," so I'm still a little skittish about what I can and cannot post... and I understand the guidelines are not "black & white," they are not "airtight," but I guess I'm looking for just a little more consistency

JanboC profile image
JanboC in reply to

I have to agree with you Melissa. There doesn't appear to be any consistency. One rule for some and a different rule for others??

Polywotsit profile image
PolywotsitPMRGCAuk team member in reply to JanboC

Could it be because the administrator is also a human being and has to have a life/family/sleep?

JanboC profile image
JanboC in reply to Polywotsit

I apologise if I have upset you Kate, that was not my intention. If you are the only admin on here then I fully understand how difficult this must be for you. Sincere apologies again, but I do have to agree with Melissa's comments.

in reply to Polywotsit

Kate, I do NOT believe anyone is blaming you (especially not me). I empathise with your "rock and hard place, position. If the site has only "one" individual responsible for the ENTIRE site's administrative and monitoring requirements, the Board has a huge problem on their hands. I am so sorry this has fallen on you.

GOOD_GRIEF profile image
GOOD_GRIEF in reply to

Which is why I suggested that members who have the time volunteer a few hours a week to help with moderation.

I want to commit, but I know I can't with my work schedule. However, there are others who would be able to do a fine job.

What I can commit is a cash contribution from the US if anyone can suggest a way for me to make a donation without most of it getting eaten up by bank fees.

Daisychain12 profile image
Daisychain12 in reply to GOOD_GRIEF

I did offer to moderate. No clear reply.

in reply to GOOD_GRIEF

I did volunteer. I offeryto be utilised in any capacity, but don't think my offer was well received.

nickm001 profile image
nickm001 in reply to GOOD_GRIEF

One way is to select this site as charity for donation if/ when you shop at Amazon...

GOOD_GRIEF profile image
GOOD_GRIEF in reply to nickm001

Not an option on Amazon USA.

Blearyeyed profile image
Blearyeyed in reply to

I completely understand this is still a controversial issue , but maybe , just my opinion of course, we could all decide to PM Administration about our complaints on it from now on.

I am just a bit concerned that although these things need discussing, continuing these heated public debates could end up being bad for the stress levels and general health of other members unexpectedly finding it in replies and reading them .

And I am sure none of us want that , no matter what are views are .

Take care , I am sure a new pattern will settle soon , bee xx

in reply to Blearyeyed

Hi Bee, Thank you. I was actually (and consciously) trying not to inundate Kate with private messages, as I believe she's the only one Moderating/Administrating, at this time. And please know, i was not trying to start a heated, public debate, just stating my opinion; and making an observation. Since there were already close to 70 comments on this thread already, I didn't think mine would be an issue. I was apparently wrong, apologies.

Blearyeyed profile image
Blearyeyed in reply to

No apologies required , I know you probably get my point , I'm sure that Kate won't mind PMs on things like this though if it means everybody's needs can be ironed out .

Take care and I hope you knee is improving , Bee

Blearyeyed profile image
Blearyeyed in reply to

Oh , and I wasn't intending to single out your reply just adding my comment at the bottom of the thread including the discussion. Yours was the last . Have a good weekend .

S4ndy profile image
S4ndy

Birthday blessings uncle Mark :) xxx

Suet3942 profile image
Suet3942

Happy birfday Mark. Xx🎁🎁

bunnymom profile image
bunnymom

🎂 Happy Birthday 🎂

walker5 profile image
walker5

Happy BDay Uncle Mark!🎂🍷♥️

9lives profile image
9lives

Happy birthday young fella, enjoy your weekend away, you deserve it.

And as Eric n Ern would say, “bring us laughter all the while”, which you do.

Keep it coming.

Carole

Lanakay profile image
Lanakay

Happy birthday to you! Have a great day and an awesome upcoming year year!

Devonspinner profile image
Devonspinner

Happy birthday Mark. Having lived near WS Mud for many years in the past, you did right to go to Dorset to celebrate. Have a good weekend and keep on with the ramblings. We all need something to make us smile xx

Hirwaen profile image
Hirwaen

Good lord Mark B, you are a mere baby!!!!! Enjoy your day.💖🍷❤️🎂

Koalajane profile image
Koalajane

Happy birthday Mark

PMRpro profile image
PMRproAmbassador

I would actually have liked this to appear further up but I could only do that by appearing to say it to the person to whom I would have to post it as a reply when they were by no means the only person I wanted to say it to.

Does it not occur to people in general that it is a question of self-regulation and being adults about the use of the forum? The person doing the admin does actually also have a life - as all of us do. And the unpleasantness is creating extra work for them. If you want to complain - I think it should be done in private, not in a way that sounds like a squabble in the playground and which engenders multiple further similar toned comment.

In my personal opinion, posting what it has been requested NOT be posted is really quite impolite and that also applies to the comments, in some cases quite unpleasant, that seem to proliferate like weeds. Please try to think about the general impression being created - again today 2 or 3 fairly new people have said they are leaving the forum. Surely everyone can think before they press reply?

Bronni profile image
Bronni in reply to PMRpro

Seems like it will remain a squabble, until the obvious double standards are addressed. I mean you did post a link to “ cleaning”? , which I thought was great! So I say this with no disrespect to you, because god knows you’ve earned your stripes, but “how come?” As a relative newbie myself I was just getting to know people and feeling comfortable to post comments, when everything changed and I was even personally scolded by admin for a remark that I considered pretty innocuous. Just sayin. . . . Bronni xx

Polywotsit profile image
PolywotsitPMRGCAuk team member in reply to Bronni

PMRPro's post was a link to an article, which she thought might be of interest. And the question of housework certainly is pertinent to how people manage their condition when they have a chronic illness.

GOOD_GRIEF profile image
GOOD_GRIEF in reply to Polywotsit

And the link I posted related to changes in health insurance coverage while traveling in the EU after - there's that forbidden word Bre*it - was irrelevant to our community in what way? Wasn't that important info for UK PMR/GCA folks to have?

Why were comments on that post shut down?

PMRpro profile image
PMRproAmbassador in reply to GOOD_GRIEF

Probably because someone complained it was political. I was censured over that too.

GOOD_GRIEF profile image
GOOD_GRIEF in reply to PMRpro

Sorry but it wasn't a partisan post. It was about what UK citizens need to be prepared for if they intend to travel in Europe this spring, and how soon they need to start getting themselves organized.

PMRpro profile image
PMRproAmbassador in reply to GOOD_GRIEF

It may not have been partisan, but something else may have triggered a complaint.

Though actually - no-one knows. Not even the health authorities. All you can do is purchase all world health insurance holiday cover as if you were going to the USA and not rely on the EHIC card. I live here for goodness sake - and they can't tell me what I should do.

GOOD_GRIEF profile image
GOOD_GRIEF in reply to PMRpro

I know.

Which was why I posted the article.

But hey, what else is new about a Yank butting their nose in...and getting admonished for it!

markbenjamin57 profile image
markbenjamin57 in reply to GOOD_GRIEF

"Butting your ('Yank'?) proverbial nose-in" G_G? Not at all, in my opinion. You aren't any kind of Outsider here, esp. because of your always kind, balanced and considered input. ;-)

GOOD_GRIEF profile image
GOOD_GRIEF in reply to markbenjamin57

That's nice of you to say, MB.

markbenjamin57 profile image
markbenjamin57 in reply to GOOD_GRIEF

No worry GG.I understand that we have diverse personal circumstances and opinions. I just wonder if the recent controversy here might also be about differing Personality Types and Communication Styles as much as anything else?

GOOD_GRIEF profile image
GOOD_GRIEF in reply to markbenjamin57

Style and Type are intricately entwined. Very few people can adapt either or both to differing or changing situations and still remain themselves.

Moderator is a synonym for manager. Being a good manager means creating and allocating sufficient resources to increasing success. What's happened here is that the success of the forum has far outstripped the resources, and no one is managing that issue. And unless that is adequately addressed, the client base will continue to shrink, and the success will crumble to ash.

This is true whether you're managing a for profit or not for profit enterprise.

Chrob profile image
Chrob in reply to GOOD_GRIEF

Totally spot on the button.

Polywotsit profile image
PolywotsitPMRGCAuk team member in reply to GOOD_GRIEF

Replies were switched off to avoid you having to deal with a thread that would develop which would inevitably contain references to Brexit, triggering a new load of reports of abuse and messages to admin. However, the link was relevant and so has remained up. If people want to comment on it they can comment on the website where the article is posted. In comparison, a discussion about housework and cleaning might be useful for people in this community and is less likely to cause disruption.

in reply to Polywotsit

Yes, yet she was not asked to turn off comments on the HU side... hence the large number of comments NOT related to PMR/GCA. However, a link to a blog, (even a blog written speficially about PMR/GCA) according to the guidelines, must turn off comments.

nickm001 profile image
nickm001 in reply to

I find it comical that you are "hidden" but everyone knows who you are :)

Chrob profile image
Chrob in reply to nickm001

Hidden is what happens when someone has left the forum .

nickm001 profile image
nickm001 in reply to Chrob

didn't know.. thanks

nickm001 profile image
nickm001 in reply to PMRpro

I don't see a problem if someone new or old members feels that they don't like this forum and decide to leave. It is best for both sides, them and us. If you try too hard to please everybody, you end up pleasing no one.

Cyclegirl54 profile image
Cyclegirl54

Happy birthday 😀

markbenjamin57 profile image
markbenjamin57 in reply to Cyclegirl54

Thanks Cyclegirl. Another one ticked off the list.. ;-)

stellafmdm profile image
stellafmdm

Happy Birthday Mark! Wish the PMR a pain free one too!

Daisychain12 profile image
Daisychain12

Darling Mark. Don’t be distressed by this. I know how it feels darling. Love and hugs. Xxxxxx

Grants148 profile image
Grants148

Dovelady,you were warned about Marks post so you were not forced to read it.Mark has written books about PMR,and these have been a great help to PMR sufferers,you can see how popular he is,we need some humour sometimes to cheer us up,no point in being miserable all the time .There are plenty of other posts on here that relate to our health issues,you will always receive help and advice when needed on this forum.

Daisychain12 profile image
Daisychain12 in reply to Grants148

Darling Grants. You are the best. I love you. Ssssssooooo much xxxx

Mrs-CJ profile image
Mrs-CJ

Mark, I am always interested in your deathly fatigue comments.....and how you are dealing with it. I’m kind of at your level of prednisone.....thinking I can stop soon, afraid to believe it might happen!.....but having way too much fatigue.

You have more on your upcoming agenda than I would ever want to attempt! I would really appreciate hearing how you made it through all your planned activities.....and hopefully you do it all with energy intact!

PS: happy 🎂

markbenjamin57 profile image
markbenjamin57 in reply to Mrs-CJ

Greetings CJ. Apologies for not replying to you sooner, I've been away for a certain unspecified 'Special Event' (ha !) over the weekend ;-).

Yep, I agree. The DF really is a significant element of the PMR / GCA equation in parallel with the usual pain and stiffness. And.. with seemingly no definitive explanation to the cause. If I don't get back to you here this week with my thoughts, please feel free to PM me with a 'nudge'?

Best wishes

MB

coda123 profile image
coda123

Hi MB, Late to the party but your birthday post really made me laugh. I liked your PMR advice about rolling with it. As I now walk with a rolling, drunken sailor gait thanks to PMR, it made me feel just fine. Cheers, Coda

markbenjamin57 profile image
markbenjamin57 in reply to coda123

coda, thank you so much. More later - turning in soon after a looong and tiring but enjoyable BB day.... ;-) x

nickm001 profile image
nickm001

Happy Birthday Mark!

Is it more fun at lower dose 2mg then a year ago? ( this post is obviously related to PMR :) )

markbenjamin57 profile image
markbenjamin57 in reply to nickm001

Thanks nick :-) I don't know about 'more fun', perhaps less miserable? But, at whatever level, the symptoms can still vary from day to day...

PiersC profile image
PiersC

Happy Birthday Mark hope you keep the big number birthdays going (and lose the little number ones some time - 3 is more than enough, if that one never gets to 4, so much the better!)

All the best

Piers

markbenjamin57 profile image
markbenjamin57 in reply to PiersC

Greetings and thanks Piers. I just think of age 62 more as still being in my VERY late 40s... :-D. How are things with you?

PiersC profile image
PiersC in reply to markbenjamin57

Hello again Mark - I am well thanks - and a quick update is worthwhile, I should add this to a post on the main system - this forum works better with more user input.

Anyhoo - I am taking three months Long Service Leave, a fine left over construct from the colonial days and when it involves full pay and allowances with no work - who am I to complain!

My leave is being taken by using an old camper trailer and the 4WD to cross Australia and return. I am now two months into this epic and having a fine time. We have been under canvas for 65 nights now and clocked about 8000km - more to do yet.

PMR - well I think this has helped. The reduction in stress has been fantastic. I have followed my rheumy plan and reduced at 0.25 every two weeks. I am now on 1mg pred per day and have never of course been that low. I do have some stiffness, especially in the hips area - but that may be camping and being 61 - I do also have some sciatica on the right side that is sore. DF seems to have disappeared - and I am very happy with that. Looking at my logbook (now on volume two after nearly three years of daily entries!) I see that I have been going for 8 days without my LLD (little lie down - aka nanna nap). Pred head seems to have gone as well and I am chirpy and happy (all leave will be stopped until morale improves). I will back in Sydney in early April when I have medical appointments galore to catch up on and with the general good news am not worried about those (I have even lost some of the weight I gained in the early days!) - not a bad outcome so far - touch wood!

So, that is me for now - I do hope you and all 'that lot' are making advances - even slow ones are good, and keep up the missives that bring a smile to the community - it helps!

All the best

Piers

markbenjamin57 profile image
markbenjamin57 in reply to PiersC

Sounds like you're having a great time on the road Piers.

I'm quite envious as in a previous life I used to be a Happy (touring) caravanner too (but that's strictly between us or That Lot will tease me unmercifully)! Ohh, the joys of hitching-up, pitching, driving the rig, messing around with nose weights, porta-loos, fresh water containers etc. And of course, a sense of freedom! :-D

I agree - less Stress + more enjoyment / relaxation should = improved symptoms especially in the DF department. It works for me too. Beyond that I think it's in the lap of the Gods!

Good luck with the rest of your adventure, looking forward to an update when you get back to Blighty ;-). How about posting a photo of your adventure with an update on your trip? I'm sure everyone here will be enthralled.

And, yep, keep grinning on the Journey - it can help a lot ;-)

Best wishes and keep trucking..

MB

Lejazzhot profile image
Lejazzhot

Happy birthday. Thanks for the humor 😍

markbenjamin57 profile image
markbenjamin57 in reply to Lejazzhot

Thanks L, all part of the service.. ;-)

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