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!
‘Uncle’ MB
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markbenjamin57
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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!
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)
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?).
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...
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...?
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
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..
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..
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!!!
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.
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..
Thanks Lt, and You bet: A FULL and COMPREHENSIVE POST-BD / PMR / PRED / SYMPTOMS Related REPORT - as soon as I can muster the energy
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.
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 .
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.
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 ?
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.
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? "
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...
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
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.
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.
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.
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).
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.
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. 😀👍
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!
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 😂🍷🍷🍷
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
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.
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.
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.
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
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.
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 .
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 .
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
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?
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
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.
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?
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.
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.
"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.
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?
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.
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.
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.
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.
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.
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!
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'?
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
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!)
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!
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!
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
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