Good Evening to all PMR and GCA Survivors, wherever you are in the world.
I write to you from ‘Benjamin Towers’: my secluded and heavily-guarded seaside retreat somewhere on the south-westerly shores of the sleepy British Isles (but now, not so sleepy since the Brexit negotiations). In case you ask, a certain US President uses a similar type of address - so why can’t I?!
I’ve held-back from making this solemn announcement for some time due to its sensitive nature - and also being mindful of the catastrophic impact that it might have on my 35,000 Followers here (sorry, that was a typo - I mean 3.5 at the last count). The Dalai Lama would be proud. He claims to have about 3.5 million Followers, but I suspect that’s only because he’s better at ‘managing’ statistics than I am.
The truth is that, whilst I have enjoyed your friendly company, expertise and emotional support around all things PMR / GCA during the past 18 months, I have also come to the ultimate realisation that, on Life’s Journey, ‘All Good Things Come to an End’. In my defence, I blame my dear, late mother, ‘Lil’ Benjamin (rip) for inheriting and promoting this rather ambiguous philosophical statement. As an infant, Lil had a curious way of inspiring me and my 3, older siblings to achieving Great Things via such motivational (if intellectually and emotionally challenging) imperatives. That might explain much about why I’m messing around with You Lot in the first place? But that’s a conversation for another time. ;-/
Either way, I have made an Executive Decision to review my status here as (sic) ‘Resident Comedian and Kindly, Honorary (and occasionally implied as ‘dribbling’) Uncle’. This is with a heavy Heart, and not without some Soul searching. I like Soul searching - I discovered some new Stevie Wonder, Marvin Gaye and Al Green albums recently, and am playing them at Full Volume tonight - much to the annoyance of my neighbours at ‘MB Towers’. Ha! That’ll teach them to complain about my 6 gold-plated Mercedes Limos blocking the road outside!
But back to the plot: of course, I am very fond of those few of You Lot who have often kept my weary, Pred-addled PMR spirits ‘up’: even if motivated to reply to my Posts in some futile attempt to simply humour, placate or even silence me in the process.
At the same time, I hope that I have lifted your weary spirits too, and raised a few smiles occasionally - or at least induced you to enjoy a good night’s sleep out of sheer boredom (a better result all round?).
Either way, I have appreciated your often kind and thoughtful responses to my silly posts here, and I sincerely hope that we have helped each other on the often long, painful and tortuous PMR / GCA Journey.
As Sir William Shakespeare said in his famous play, Romeo and Juliet, ‘Parting can be Such Sweet Sorrow’: and so I feel it only right and fair to now give you all (and myself) a break from the Silly Madness that I have inflicted on you (or, maybe that you have inflicted on yourselves?) for far too long...
As a result, I have decided to take some time-off from this forum. ‘BUT, FOR HOW LONG?!’ you might ask, anxiously. Fearing a stampede of panic and hysteria (as if..!), I’ll just say: ‘Give it a week and I’ll let you know’.
As with the best of plans and negotiations, ‘Nothing is Set in Stone’ (unless you’re a Stone Mason - in which case the Terms and Conditions do vary a little).
Wishing you all a Happy, peaceful and positive mid-to end of the week.
Back soon-ish - if you’re not careful…
Happy Days, and try to Keep Smiling on the PMR /GCA Journey…
MB
Written by
markbenjamin57
To view profiles and participate in discussions please or .
What !!! Leave us... you mean really leave us. OMG. I need time. I mean there was no warning. You gave us no warning. Is it me. Did I do something wrong. I laughed at your posts. I know I did. I live in the south too. Thought we were kindred spirits. No. Can't believe it. Won't believe it. Ha. You'll be back. You'll miss us just a little bit too much. You'll first sneak peeks at the site. Then you'll just have to post. Oh god! Have I rambled too much. Well it is 1.30 am. Will try to be normal tomorrow.
But I have to admit to having over-cooked it a bit judging from the (mainly) concerned and heartfelt other replies here. In truth, I feel a bit embarrassed about causing a stir un-necessarily. Oh well...!
Love your SOH - you trumped me with your response - great!
Was quite proud of my response actually as struggling with a flare and that was the cause of me being up half the night.That said ... hang your head Markbenjamin. He He Loved it. Normal. Well takes one etc etc. .
Markbenjamin57 I was sad to read your latest but unless I have got it completely wrong you are finding your own fatigue more overwhelming and really need a break to concentrate on your own health. A little comment in one of your recent posts saying you were too tired to write any more until the morning made me wonder if you were finding replying to so many fans too much. Whatever the reason take rest, put yourself first for a while and then come back when you are ready. We will all still be here. Ps I am in the south west too. Big hint in my moniker!
No problem mark just good that we haven't worn you out. Alls well that ends well. Shows how much we value you. Certainly nice to have friends so close.
Have just read Brixhamhamsters reply. Sorry if you are taking a break because you feel bad. Hopefully some rest and relaxation will do you good and bring you back with your humour and nonsense soon.
Thank you for the uplifting words and help you've given this PMR-weary traveler and so many of us. I completely understand your need for a break. Please let us know if a book materializes. All the best to you!!!
Please don't leave us. By all means have a short holiday but come back soon refreshed and raring to go again. We need your musings and reflections.
I feel I have been going along this journey with you ' side by side' as the song goes. I started this journey about the same time as you; January 2015 and although I am on a slightly lower dose, I am taking a pause on my preds as my husband has been in hospital for five weeks now.
Going in each day to visit him after so long is very tiring and the help from the aunties is reassuring.
I look forward to your regular reports. It makes my day. I live in the south too.
You just take it easy for a while mark, you've earned it, and when you have fully refreshed yourself come back and make us all chuckle again. We'll miss you but it's time to put down your pen and have some me time.
You've probably seen my sequel to yesterday's post but I so appreciated the thoughts today (even if I was winding you all up!). Yep, all's ok in my world, all considered.
Be assured that the cheeky banter WILL continue (whether you like it or not) - I have too much invested in You Lot to run away!
I, too, have had to do similar, MB. PMR burnout I think, but after 17 years of this rubbish (no, not you silly, PMR) I feel entitled to a few months/years/decades of hiding behind the sofa with next door's cat. (He feels entitled, too, but then he's ginger).
I have not disappeared entirely - on the days when I can fit in to my full Kevlar body-suit I do emerge to arrange another tin-foil hat. They do crease so!
It's such a joy to read the inane ramblings of a fellow sufferer. I thought I was the only one who wrote posts and emails to my friends that even bored myself, what I don't understand is how I have missed you. Congratulations, you now have four and and a half followers.
I'll interpret 'inane' as a being great compliment!
You got-off lightly by missing my other posts (unlike many of You Lot here). Let's just hope that you soon join the heady ranks of 'MB Follower Four-and-a-Half' - but at your peril....
That said, The Aunties here will probably want to adjudicate in the process... they know about these things
You have contributed so much fun and special 'Markbenjamin only' humour to this Forum. Please come back soon, we all need to read the 'Lighter Side of PMR. 🤗 Jane
Sincere thanks Jane, I feel truly humbled by so many kind and thoughtful replies. Yes, I mean that seriously...
All I will say is: check my updated post (today..) and all will become clear!
MB
Hi Mark
“take some time-off from this forum”
What’s wrong with you man?
Have your brain cells finally given up on your giggly silliness. I hope not I conclude that you’re just out to frighten us and within a few days you will be back with someone like your old but departed friend Sir Stanly Unwin. So I forecast “deep joy” and look forward to your idiosyncratic nonsense to continue
Now - I have to come clean :-( as if you have not guised by now
I deleted my Account!!! PeTee70. Why, you might wonder? (or not) It’s complicated, so let me try and explain as I am sure you will not make the same mistake as I
My participation on this forum has been minimal, but an avid reader and without the advice of the Aunties and other contributors (too many to name) on this forum I think I would have been lost in a sea of No answers, dubious, misguided and frankly at times, incorrect information from the ‘Professionals’. We know their under pressure and they don’t know everything but that’s no excuse for downright incompetence when advising the way to proceed or how to manage PMR/CGA. (rant over) Sorry I’ve diverged
About a month ago or more I started to feel as if I was getting to the stage where PMR was burning out.(3 years almost to the month) It coincided with a reduction from 6mg to 5.5mg.and I didn’t have the usual withdrawal twinges, so I thought I was ‘out of the woods’ (I have been using the DSNS method) but after a few days I started to feel even more fatigued and unwell
Coincidently my computer which I had built from component modules about 7 years ago decided to blow up, not literally but it went ‘belly up’ and I lost everything stored on it. To compensate the OH and I decided that while I rebuild a new ‘super’ computer and reload it with some ‘stuff’ that I had backed up on memory sticks, we would both buy new and up to date mobile phones. Big mistake! Nothing but trouble transferring data, contact numbers, email addresses, you name it. So I was ‘in the dark’ for a while as far as the blog was concerned.
However I won’t bore you with any more of this as it is getting more boring than most of my ramblings. Suffice to say that I just felt that thing were getting on top of me, overwhelming fatigue making me depressed and I should take a rest from things. In a fit of despair I deleted my HealthUnlocked account via my old mobile phone. Little did I know that I couldn’t get back as PeTee70 so I eventually opened a new account i.e. Pastit. Maybe I should have chosen ‘Lostit’ Anyway I’m back now, but have been out of the loop and trying to catch up. :-).
By way of update, I am still on 5.5mg and the fatigue is still over whelming. Some days worse than others, not much pain apart from funny nights where I wake up with strange stinging type pains at top of legs and buttocks which are frightening to say the least. When I get up and walk around they tend to subside somewhat, but I do not feel well at all
Looks as if I will have to get back to the doctors on this one, Oh God
Any thoughts on my symptoms from members who have managed to stay with me this far would be most welcome
So in summary Mark it’s good for me to be back, and I’m sure you will be back as well
So the Phoenix rises from the ashes. It took me a few minutes to 'get' pastit!
Sooo glad to see you back! A few of us were wondering (and, to be honest, a bit concerned about) why you disappeared so suddenly after becoming a Regular here. I quietly feared that you had seriously given-up in your PMR struggle and decided to do something 'drastic' (like jumping off your wallet? ha ha). Or, maybe, that your OH had confiscated your computer due to you spending all day here. Or, maybe you'd just decided to go and play with some other (more grown-up?) children...! Either way, WELCOME BACK! :-). Not least because I've been severely outnumbered by the girls in the meantime ... ;-/
I know what you mean about this forum vs. (some of) the Professionals.. I think you've said it all. Interesting, too, about your recent 'out of the woods' (as opposed to 'out of body') experience. You might remember me having a similar break about 3 months ago. But, as you say, the PMR Dragon can, and often does come back to bite us. Yep, miserable - and depressing when Hope is trumped by Reality.. I can well relate.
Sounds like you're experiencing classic Pred withdrawal symptoms at 5-ishmgpd: but I'll leave it to the Aunties to give you their expert opinion. All I can say is, your trajectory and experiences are very similar to mine - now at 4mgpd and struggling a bit after a really good break from virtually ALL symptoms a while back. Oh well....
On a serious note, I think Depression as a result of the long-term debilitating pain and fatigue of PMR / Pred withdrawal / often enforced change of lifestyle etc, is quite natural. It's good to be able to openly compare notes on these things here, and I was quite amazed at the concerned and thoughtful responses from many of You Lot when I posted the spoof (well, it was intended to be, but it backfired - too realistic) 'Announcement' about taking a break. Mmm.. a reminder about how much people here watch and care when anyone appears to be really struggling emotionally, as much as physically..? My latest post has hopefully reassured my 3 and-a-half Followers that I'm still Open for Business and was only winding them up (!). As a result, my Following is now soaring to something around 4 and three-quarters and looks to reach double figures by 2025. Dalai Lama - be scared, VERY scared...
I'm laughing about your IT catastrophe and 'overhaul' :-D. You must be pretty clever to build your own PC in the first place, but obviously not that smart to fathom how to set-up a new mobile for data etc. I've never managed it on my 5 year-old Samsung Galaxy S3 and still use my vintage / classic Nokia 6310i in the similar generation Merc - it's all set-up for hands-free, works a treat, and looks and seems 'right'! For two pins I'd dump the smartphone and just use the Nokia... keep it simple?
Well Pete, that's a good catch up both ways I hope. Great that you're back, and I'm sure That Lot will say the same. Keep smiling through the tough bits. Will be in touch again soon - careful what you wish for.....
I was going to say “Deep joy and gratitudaload” but I think it would be more appropriate for me to say it in my own words. So in my words I just wanted to thank you for the welcoming me back. It’s been a lonely place
Somehow I feel as if I am living in a parallel universe, just read that you are back, something strange going on with my emails or am I in a time warp? I am clearly unwell.
Seriously I feel deeply embarrassed about the whole episode, talk about Phoenix rising from the ashes, a mythical bird aye, I thought I was feeling a bit hot when I finally got back
Changing the subject somewhat, I Just looked you up on ‘Linked in’, apparently I should be honoured in your company It claims that you are President and Chief Operating Officer of NCR, a leader in Omni-channel solutions that turn everyday interactions with businesses into exceptional experiences Wow! Now I really could do with an exceptional experience, Ha
Oh sorry that must have been the wrong MB! So I looked again;
Facebook says you are a standup comedian What! not you well I feel we’re getting closer.
Now, coming back to your comments, “jumping off my wallet” well I did think about it but it’s much too high. Confucius once said “if you’re going through hell, keep going” or was that Winston Churchill
As far as building a computer, it’s very easy, search on youtube and it will show you part by part how to do it. Mobile phones are a different matter, they are completely alien to computer builders and when I changed my ‘clockwork’ Samsung to an ultra modern Motorola I had problems with compatibility, hence the loss of data etc and a huge learning curve. I told you before “ I’m an old man” and these thing take time that’s my excuse and I’m sticking to it.
On a serious note, thanks again for the welcome back and I am delighted you were only pulling our legs with the suggestion of your departure, hell what am I wishing
Keep well Mark and keep doing it; maybe whatever relives the symptoms of this very tiresome and mischievous PMR, I think a large glass of red will do it.
Pete
PS. Apparently I have got to fill in the introduction page, so that will be tricky, I think I will have to say something like “Hi I am NOT new here ............
Well, it's Friday night again and 'The Sun's setting in the West' - as usual!
The 1964 Vintage Chateaubriand is already open (at 300 quid a bottle, better not waste it?). I also have a very fierce, home-cooked Chilli Con Carne simmering in the oven, with the customary garlic bread as a side-dish. And, yes, some Indian Hot Lime Pickle to make things more interesting all-round. Eating soon, sleeping soundly, and handing-over to the Sleep Fairies... We'll see.?
I'll get back to you over the weekend - much more to catch-up on. In the meantime, it's great to enjoy your company here again - seriously!
When you build your own you know it is sensible - mobile phones, whatever they might be, are certainly not that!
My Nokia is a 3210 - with original battery. Must date from about 1999 when it was first made. And I have the same number despite Vodafone's attempts to achieve otherwise
I got very accustomed to my old mobile but when I used it for replying to HealthUnlocked messages and found a typo, when I tried to edit it, either it wouldn't let me or I would lose the message. So when the computer died that's when I change mobiles hence the problems
No worry Dobermanlover, it was intended as a wind-up but I didn't quite get the humour 'right' (embarrassed emoticon etc) and some of You Lot took me literally - Bless. Oh well.... just shows how much people really care (either that, or how much you need a regular giggle?).
Have a peek at my latest post (yesterday) and it might reassure you that I'm open for business as usual. I agree, with PMR there's not much to laugh about so a few supplementary chuckles come in handy
Big sigh of relief! You help to keep our spirits up when they are flagging! Do try to look on the bright side most of the time - literally at the moment, as I have had both cataracts done as a result of the steroids. Can see better long distance than in my younger days!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
I conclude that you’re just out to frighten us and within a few days you will be back with someone like your old but departed friend Sir Stanly Unwin. So I forecast “deep joy” and look forward to your idiosyncratic nonsense to continue 
