Greetings All, whoever and wherever you are in the Big Wide World (not forgetting Welsh Wales, ‘look you’).
Well, where to start - after admittedly being a bit quiet recently? “DON’T BOTHER!” I hear some of you say, in a state of Terminal Exasperation.
But I vowed to continue to torment You Lot whether I’m fully ‘recovered’ from PMR (as if - ha!), on the way, going backwards, sideways, or plain Confused.com (as seems to be the case for many of us). As always, ‘we’ll see’.
In the meantime, I’m pleased to report this week’s Latest News from Weston-on-the-Sea in a Brexit gripped UK. Heaven help us..
First, a sighting of the legendary Loch Ness Monster in the 1 metre deep seafront children’s paddling pool has prompted a major Marine Wildlife survey into how he / she / it might have appeared there. Several witnesses (mainly age 6-ish, glued to their i.phones and high on Tutti-Frutti) reported: “YEP MATE, WE DEFO SEEN IT AND IT WAS LIKE MEGA. GIMMEE GIMMEE GIMMEE !!!”.
Next: in a £13m modernisation scheme, WSM’s elegant Victorian Town Hall is being replaced by a combined replica of the Taj Mahal and Trump Tower - to re-assure local residents that WSM is (q.) ‘both Culturally Diverse and Forward Looking’. Geoff Sims, CEO of WSM’s Town Council is due to retire next week, and made no comment when approached by local Investigative Reporter, Tony French.. Nothing new there then...
In other news:
Famous local resident and World Hokey-Cokey dancing Champion, Bill Peabody, sadly died at age 102 and was buried today. The interment was complicated because, as soon as the funeral directors put his left leg in the coffin, he put his right leg out about and shook it all about. I’ll leave you to imagine how the rest of the ceremony progressed. Only to say that it took several hours and 18 people to get him in the box...
A 5 metre deep Sink Hole suddenly appeared in the main road into WSM, causing traffic chaos. A local Traffic Police Spokesperson said (q.): “We have several Officers looking into it”. Hmmm, so much for efficient Police resourcing…?
On 29 October (here in the UK, the day of the clock / time change from BST to GMT - yes, complicated, I know) I asked Tedski to ‘put the clock back’ in the Limo. After an hour, he triumphantly returned and said: “Meestaire MB Boss-ski, I’ve put your ‘clock’ back by 50,000 miles. That should add about £5000 to its value - Job’s a Good Un!”. Oh dear…
Feeling energised, I ventured out to my local B&Q (for those of you overseas - a major UK DIY store chain) looking for a decorative ‘solution’ to enhance my new Atlantic facing (yes, really!) balcony at the Mansions. An eager (but heavily built) store assistant guy approached me briskly and asked: “Do you want DECKING?”. Well, with my Military Armed Combat experience, my first thought was: ‘Take No Chances’. So I gave him a lightning Left Hook to the lower jaw and scarpered to the Interior Flooring department to look for some beige carpet for the hallway. Phew...
Sadly, my experience in the Soft Furnishings and Carpet Department was similar. An equally brisk (but very attractive) young lady store assistant asked me: “Do you want FLOORING?”. Before you say it: NO, I would never physically harm a Lady - or anyone, unless under mortal threat. So I made my apologies and left the store rapidly. The Old Bill (Police) were very understanding when they traced me from the CCTV footage. When interviewed under Caution, I explained about my PMR, the Preds, and my dodgy association with You (un-named - just in case of Litigation) Lot. My Case comes up before the Magistrates' Court next week - wish me Luck?
An armed Hi-jacking of a lorry (truck) containing quick-setting Cement has prompted the local Police to search for the culprits. A Police spokesperson said: “These are hardened criminals and we are ‘set’ on finding them”. The mind boggles…
A reportedly ‘drunken’ but mainly well-intentioned comedic brawl in ASDA between 15 visiting Elvis lookalikes and a visiting delegation from the Reigate Women’s Institute ended in a Nil-Nil draw - as adjudicated by the store’s Security Staff. There were no reported serious injuries apart from some smeared mascara and torn fingernails (mainly on the part of the Elvis impersonators). A re-match is scheduled in Waitrose on Christmas Eve. To be honest, my money's on the Reigate WI - they're known to be a particularly aggressive Lot when cornered in the Organic Veg department.
My latest Charity (Op) Shop bargain is a rare, Victorian Monocle!! If I’m lucky enough to find another one I can make a real Spectacle of myself!!
And, finally..
As for Christmas..? Yep, the Merchandise is already shops. As for my part-time Xmas job? (the clue’s in the photo.. Yo Ho Bl**dy Ho).
So, in conclusion: if you’ve been either intrigued, confused due to Pred Head and / or daft enough read this far, you might ask: what does all of this Nonsense have to do PMR / GCA / Life in General etc?
Only to say: we all have our Ups and Downs on the PMR / GCA / Life Journey. But try to make the most of the Ups - and be patient when rolling-with-it during the Downs. ‘This, too, Will Pass’ - as I well know from experience.
Best wishes, enjoy your weekend, and look forward to another Christmas coming soon.
And.. try to keep smiling on the PMR / GCA Journey. It can help - take it from me
‘Uncle’ MB
Written by
markbenjamin57
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Hi Mark, this has been, and no doubt will be , the best part of the day for many of the PMR/GCA club. I, and probably many more of the club members, look forward to this kind of "medical enlightenment" on our quite often very painful, and unrequested journey. Apart from the vast wealth of knowledge we gain from the rest of us, this kind of information forces us to smile through it all. Keep it up Mark, waiting for the next episode. Trevor.
Many thanks Trevor. All I can say is: if my inane ramblings are the highlight of the day for some of You Lot, a modern phrase might apply: GET A LIFE! (only joking, seriously, thanks).
I like to stick to my promises (or is it threats - ha ha?), so another Bonkers episode to come when I can muster the energy
Are you sure you're improving, I can't see any evidence of it. Just as bad as usual, and more groaning is not what we need!
I once went into a sports shop, displaying only trainers, and asked the poor lad there if he had any balls. He went bright red and I didn't help by breaking into laughter when I realised what I said. Now that is true.
Thanks Lt. Actually (and despite the old gags about 'Weston-on-the-Mud / the tide only comes in twice a year etc'), nowadays it's a really nice place to live. The Atlantic facing coast, the views, the coastal skies (always changing), stunning sunsets, easy to get around, etc.
Well, Kath, it's a nice balance all round here. That said, I miss the magic of the Scottish Highlands and Western Isles at their best. I have happy memories of Hols there (apart from the Midgies in the Summer and lots of rain all year round..)
Of course, Monica. You can all come and have posh Tea and Cucumber sandwiches at the Mansions when I've finished my Santa shift (working hours 9-5, cheap rent for Grotto in ASDA, daily Performance Target of bouncing 200 'Litterluns' on my PMR ravaged knees to get my bonus).
Actually S, WSM really is a nice place to live, at all sorts of levels. That's why I moved here 35 years ago: and, through thick and thin / much Life Journey travelled, I'm still happy here. Blimey, maybe I should apply for a job with one of the local Estate Agents?
Thanks Patience (ohh, sorry I forgot your 'real' name - am making a list so I can keep up).
Mmm, well, I've always enjoyed messing around with words and humorous concepts - especially during my PMR Journey when I've often been too wiped-out with the DF (Deathly Fatigue) to do anything else other than sit at the PC.
Wow - an MB Rambling equivalent to + 2mg Pred?!! You've just given me a winning business idea...
And I appreciate the feedback even more - many thanks Edward
Ha Mark, you certainly have a brain which has a fun time, does it ever run in low gear? and the picture of you dressed as Santa is very lifelike so I could spot you a mile away. Now where did I put my specs?
Ha Pete - you should see me on a BAD day - Grrr... Yep, the Santa pic is a Police Photofit from when I was arrested last Christmas after getting into a brawl with a 90 year old Santa 'Imposter' who tried to muscle-in on my patch in ASDA. It was a close thing, until he spat-out his false teeth in a fit of rage - and couldn't give the Old Bill a coherent Victim / Witness statement as a result. Hey ho...
Thankyou Mark,l agree with all the previous posts,certainly cheers me up! I was wondering if the monster in the pool could have been a soaking wet bear,fur all wet and clinging to his body,a kind of blob ...... can you confirm he was with you at the time of this sighting?
Who knows, Grants? Well, yep, it might (and I stress Might..) have been Tedski messing around again. He did go AWOL on the day, last seen wearing a snorkel and a fiendish grin (a bit like me..?)
I read the Weston Mercury this week and chatted to my son-in-law, who is a police officer in Weston Super Mare, and I have to say that I suspect you are reporting Fake News!! ??😙🤔
Let’s face it, Weston Super Mare on a cold and gloomy November day does need some excitement injected into it. However, up here on the Mendips there are all sorts of rural frivolities going on. The highlight of my week has been the annual village pumpkin show and conker tournament.
As you seem to attract trouble in any supermarket you visit, will you please avoid Sainsbury’s in Worle on Wednesday so that I do not become embroiled in any of your shenanigans.
Nice to be in touch with someone local - what part of the Mendips? I can see them from the Mansions... honest! We're fortunate to live in this part of the West Country aren't we?
Please tell your Police Officer son in WSM: (q) "It's all a Frame-up by a bunch of demented Polymylingerers - and any stories about me in the Weston Mercury aren't to be taken seriously". As for Sainsbury's in Worle? Well, I AM known to loiter around TK Maxx and LIDL after my daily outings to the Charity shops. Sad, or what..?
Oh, no, I've told you too much now. I deny / retract / redact everything said here (or not, as may or may not be the case)
Mark I had only just posted how today was totally shit with some squatters having invaded my body and with a steel band rehearsing in my brain when I read your post and I can say I am still laughing now. I used to be a barrister so quite happy to represent you in court but I would make sure you bring a change of clothes because I have been known to sail close to the wind of “contempt of court” and with the pred on board can not guarantee either of us will get out the same day!!
Blimey, Yellowbluebell. Former Barrister?! Laughing at my Gags?! Represent me in Court?!
All I can say in reply is that, despite your High Profile Legal / Professional background, a conspiracy between PMR and / or the Preds must have rendered you 'One Slice Short of a Loaf* / Terminally Bonkers*, or worse - if that's conceivable. (N.B. *these are Medical Terms as recognised by leading Psychiatrists).
That said: I'm up for it if you are (having a Laugh together in Court, that is). I like a bit of intellectual Fun - but that's probably obvious from my silly stuff here...
I really enjoyed your mad ramble and I am sure a day in court imaginary or not would be great fun. My colleagues have long thought I was as mad as a hatter and to be honest they were prob right on some occasions especially when some of the more “ way out and idiot judges” were in court.
I feel the same as you that laughing at the things happening to us are definitely helping and if I make someone else laugh I am more than happy. I spent 15 mins yesterday looking for my pj bottoms only to discover I was actually wearing them!!! Keep up the manic rambling.
Thanks Ybb... I've heard that there's often a lot of dark humour behind the scenes in the Criminal Justice System ;-). As for Senior Judges etc? Well, they're no more immune to the ravages of illnesses like PMR / GCA that the rest of us humble Lot. Facing one's Mortality is a great leveller..
As you say, the ability to find the funny / ironic side of Life can be a great coping mechanism, if nothing else. It works for me
Now, PLEASE locate and wear the appropriate PJ attire day and night - or the neighbours will be highly confused if you venture out incorrectly dressed
God my neighbours gave up wondering what the hell was up with me years ago. They thought for quite a few years I just liked dressing up when they saw my stuff in the car!!! They asked my poor OH what I actually did work at and when he said they didn’t believe him!! They definitely wouldn’t worry about my pjs especially as I have also been seen at the local co-op in them and a pair of wellies(only shoes to be found quickly)
PJs and wellies is a style trend before lunch here in Welsh Wales.
Were you neighbours actually trying to get some tasty gossip out of your OH from commenting on your "fancy dress"?
I have heard tell , that barristers "costumes" , have been known to be used as part of the job by certain individuals on the other side of the Law in some circles.
They may have been imagining you as part some of other Elite profession!!!
Spent ages one day searching the whole house for a teatowel only to be told I was holding it.
Do you two want a Court Artist to mark the occasion for the people on this site.
I am very Bleary-eyed at the moment so it might not look too much like you, but I think that's the style of Court pictures so it would be a perfect job.
We could keep our PJ bottoms on , it might add a bit of variety to the judges day!
Well as we are all on pred, I sail close to the wind in court and it seems Mark can’t do anything without causing chaos you will fit in totally. Sounds like this is definitely something we all SHOULDNT do any time soon. As my neighbours think I am mad they fortunately don’t bring me their moans and groans about things I couldn’t give a damn about!!
Perhaps we could do it as a tableau on a carnival float at the Summer fete in Weston next year.
From what MB says about it we would fit in nicely.
The first PMR /GCA effects of Pred induced lunacy awareness float.
We could have the now well trained PMR Halloween zombie flash mob ( refer to a previous post from me if you are lost) dancing at the sides , a torturer in a white coat could pretend to be the judge , and we could all throw sweets at each other as with the aches and pains we would never get them to reach the crowd.
Have a great day, and as you can tell , I may need your legal help for my committal on mental grounds very soon!
Oh I am quite happy to represent anyone just not sure how effective I would be when I can’t even find my pj bottoms or trainers. Looks like it might have to be wellies again. The float sounds like a brill idea just not sure that WSM could cope with us all descending en masse especially when they already have to deal with mark!! I have the urge to cook as well today so just started making butternut squash soup. This might work but I may also forget I have veg in the oven until they are barbecued!!
If the Professionals are allowed to say their food is "caramelised " when it's charred to death then we can get away with it too!
Maybe , Marks family and friends might judge him less harshly if they get to meet the rest of his whacky bunch as well, although from the sound of the mad cap folks of Weston we might all pale in comparison.
When the kids were young they would say they were dressed when they came down stairs dressed in socks and a hat , if you disagreed , they said , 'we're not naked!"
My daughter had a friend who never took his little red wellies off , even when he would get naked on the beach, ok they were 5 , but I think it could be argued as a legal president !
You are not naked if you forget your PJs, as long as you have your wellies and leave your hat on. Therefore no forgetful PMR float riders should be arrested for exhibitionism!
But you are "the law" so I will leave it to your experience.
That sounds like a reasonable argument and even I wouldn’t bother trying to argue with it! There is definitely something to be said about us being more “special” than mark and it might work to let his family see how sane he actually is?!!! So next summer it is. WSM on a float with or without certain items of clothing but definitely a hat and wellies
In the same day I also lost a pair of trainers for over 20 mins but then found them under the nice pile of clean folded washing that the bloody cat was sitting on.
I am beginning to wonder about my train of mind now.
Stream of thought sent me from PJ Bottoms , to Soggy Bottoms ( I am watching GBBO final again!) and you have inspired me to right a post about Baking !!
Love you all on this site you are keeping my brain going ( my family may not appreciate that as much though, they think I am getting more batty than ever!)
Have a great day and if not you can always blame the cat!
I am still trying to get my head around which way round to hold a sparkler and working out a way I could enjoy a toffee apple without a headache and major dental surgery!
( Would the Nutriblend fight back on health grounds if I made it into a smoothie , it's fruit innit!!)
For a slightly warped and creative mind like my own ( "fruit the loop" even before the medication , my kids apparently got me tested!!) you make Weston sound like an amazing place to live.
I have visited a few times, it was lovely but I did not notice the curious side of town , maybe MB is kept indoor when the tourists are in town?
Must go back again , if the giant sinkhole or seamonster are still about I know a few people I might like to feed into them ( unsurprisingly many have white coats and a bad attitude).
Thanks for cheering up the day of someone all the way on the other side of the world in that place you call Welsh Wales.
Yep, 3 ASBOs, Security Tagged and under a Curfew most of the time. I blame Tesdki for leading me into bad ways. Why does he always seem to get away scot-free..? ;-/
What a terrific post. Enlightening, Funny , compassionate, and so on point! This journey is certainly one to be remembered😱, People like you make it a lot easier👍
I visit my local B&Q store so often that the manager has invited me to the Staff Christmas Party. Trouble is, nowadays there are only 3 human staff and 17 automated checkouts. That'll be interesting.. MB: "Do you enjoy working here?!" Reply: "Please place your goods in the bagging area" Hey ho...
I know it is not very kind of me to say that l am very relieved after reading the previous posts that the Pred can make us slightly mad,or in my case last week having a rather embarrassing meltdown,just because someone said something that triggered a very angry response.l was so ‘traumatised’ by the whole event,l came home and after letting myself into the house wondered what the bleeping noise was.l had forgotten to disarm the alarm system.l had to try several very anxious button pressing and tag showing manoeuvres to stop it going off !l am still trying to calm down.l sometimes feel that l have permanent PMT,which of course Mark l assume would never have had to experience ,at least l hope not ! Thankyou again Mark for your humorous ramblings,it seems to get us all going and treating our condition in a much lighter way.
On a serious note Grants, quite a few people here report greater than usual mood changes / anxiety / 'frazzledness' etc on the PMR / Pred Journey. I've certainly noticed feeling more 'edgy' than usual, quite often - and especially when reducing the Preds.
I'm not an expert but it does seem that, aside from the physiological ravages of the PMR (& GCA?) inflammatory process - which are bad enough - the Preds (which of course 'manage' it) do affect the Brain's bio-chemistry, if that's the right term. And for some of Us Lot, the effect is quite dramatic. Just read the warnings of possible side-effects on the Pred packet!
I'm sure the Aunties will be along to explain exactly HOW Brain chemistry is altered by the Preds. Although quite technical, it might be reassuring to those of Us Lot who really do think we're losing the Plot - and why.. ;-). Just Google 'Steroid Dementia' and there's a wealth of info there about it - if you dare...
As for my experiencing PMT? Some women friends tell me I have a strong (q.) 'feminine side', but that's taking things a bit too far. Ha!
As I always say, Smiles and Laughter won't necessarily fix PMR, the effects of the Preds or anything else in Life - but it is known to be quite a powerful Stress Reliever physiologically and psychologically. Something to do with the suppression of Stress hormones I think - there's been some serious research into this.
Thank you Mark for your reply,very helpful and informative as usual.l had to smile when you said your women friends tell you that you have a strong feminine side,in fact it has made me laugh out loud,sorry to find it so amusing ! It certainly does reduce stress to laugh, it is something rather lacking lately with all the ,dare l say it,Brexit negotiations,and the dreadful drug related knife crime etc.l will show my sons your post about preds.,altering ourBrains bio-chemistry.They were not impressed when l told them about my recent meltdown,trying to explain that the Pred.,had caused it did not seem to be believed by the puzzled look on their faces ! It certainly does cause me to feel edgy and losing the plot ,l am only on 5mg,up from 3 mg,but it has affected me more than when l was on a much higher dose.l think they are becoming rather suspicious as to why l am so easily upset.Best wishes Mark,l am pleased that you are off the preds and long may that continue.
Ha Grants! As for the so-say 'Feminine Side' (Relative balance of Male / Female Chromosones that might (I stress, might) influence Personality Type Orientation / Social Behaviour etc)? Actually, there's more to it than we might think...
Anyway, enough of that. The main thing is that you / Us Lot can have a giggle in between all the serious and sometimes tragic stuff in the national media. Not to mention Brexit, of course!
But, as you say, sometimes even our well-meaning and caring N&D can't quite appreciate what havoc such a serious (yes, PMR, 'serious') and chronic but 'invisible' illness can wreak - unless they've experienced something similar. As has been discussed here before, sometimes we have to educate even those close to us (not to mention some medics) about how, exactly, our illness affects us physically - and emotionally. Been there and got the T shirt with a few of my friends who just don't get it. Mmmmm...
Although I'm no expert, you sound relatively ok at 3 / 5 mgpd +/-, even if oscillating up and down as I do (note: not quite off them just yet - 2mgpd and holding steady after a lot of physical work recently!). From what I've learned here (mainly from the Venerable Aunties), at these relatively low Pred doses, it's usually a case of 'tweaking' the Preds up / down a little according to one's circumstances. And, as always, Slowly-Does-It when approaching Pred Club Zero, even from 2mgpd. A delicate operation - a bit like landing a Jumbo Jet safely in high winds on a narrow runway...? (best analogy I can come up with - ha ha!)
Thanks again Mark for your reply,l tried to reduce by 1/2 mg last week but the tinnitus in my head was louder so l went back up again ,l intend to see my GP about this.
The tinnitus may well be linked to the vasculitis and you need the other 1/2mg to keep under control - I have atrial fibrillation and the cardiologist's opinion yesterday is that it is part of the systemic part of PMR and that does account for the a/f being worse at lower doses of pred or getting worse during a flare. She has nothing she can offer to make the a/f less bad - so more pred it is.
Thanks PMR pro,l was OK for about six months on 3 mg of Pred,then lowering by 1/2 mg triggered a flare plus very irregular pulse.lt calmed down when l increased my dose to 5 mg. l am afraid to try lowering the dose again.The problem is that any tests l have ,apart from one,never detect the problem because it has calmed down by the time l see a doctor.The trouble l have is that l have this noise in my head all the time and l would not be aware of any irregularities but for this,l would really rather not know ! I do at least know now that it is inflammation and l need the Pred to control it,and that is why my doctor cannot do anything about it. Best wishes,Patricia.
How long does it last? You have two options: one is to call 999 when it happens and explain what is happening, they should treat it as cardiac related and be there quickly with an ECG machine. Alternatively you tell your doctor you are worried and would like to have a longterm event recorder - you wear them for up to 2 weeks and that increases the likelihood of catching an episode.
My a/f is associated with the inflammation but most of the time it is well managed with medication, just flares aren't covered it seems. But if you have an arrythmia you should be on anticoagulant medication to reduce the risk of having a stroke - so it is important to get it diagnosed if you have. If it isn't a real arrythmia it doesn't matter so much but it is always good to KNOW!
Greetings from Welsh Wales! I think you'll find that WSM looks towards us here in Wales over the Bristol Channel rather than the Atlantic. And I failed geography O'level!!! Thanks for making me laugh.
Greetings Joan - all part of the service ;-). Yep, I can see the south coast of Welsh Wales from the Mansions: but my humble abode also faces due West out towards the Atlantic.. and South towards the Mendip Hills in Somerset. Almost a 270 degree view - fantastic all year round!
Like you, I studied but failed 'Joggerfy' O-level (I blame the boring teacher). But I had a more engaging passion for studying things like the 6th form Beauties (girls, of course), how to get served with a Pint at the local Boozer whilst only 16, and getting my hands on my first car (a 1965 Triumph 2000), etc.
Thanks PMRPro.l was referred to cardiology and have had 48 hour and two week monitoring and nothing happened during those times .lt seems to happen unexpectedly and usually settles down after a day or two,l do not think it can be my heart.The only thing my doctor has said is that the PMR was pinching the blood vessels in my neck .l get the impression that they do not know what to do about it.l think that the steroid seems to keep it OK.,as long as it controls the inflammation .l will go to A&E when it happens again.
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