Greetings Polymarauders and Pred-posers everywhere
Well, there’s an old saying: ‘Feedback is a Gift' - and I always appreciate Feedback. Here are a few randomly selected comments from my post-bag of nearly several kind letters and e.mails from those of you have been daft enough to part with your (or worse still, someone else's) hard-earned money for my book 'Write Me Funny.... etc' - or have perhaps heard about it somewhere.
As always, names have been changed to protect the anonymity of those of you who quite understandably might not want to be associated with such Bonkers-ness. To be honest, I don't blame you.
Here goes..
Dear Four Eyes, I saw a copy of your book in Waterstones in Portsmouth. I just wondered - did you leave it there by mistake whilst shopping for a proper book? I thought you might want to go back and collect it before they chuck it in the recycling bin. Hope you get better soon, love and kisses… (Brenda Stokes, Basingstoke).
Hello MB, you Silly Blogger! Now that you are a famous author with book sales now in double figures (12 and a half, I understand?), have you considered going on BBC’s ‘Meet The Author’? That miserable old g*t James Naughtie is always banging-on about the dark psycho-dramatic undertones in his posh Guest Authors’ fancy, hard-bound quasi-intellectualised outpourings about their experiences of trivial things like gang warfare in Mothercare, political conspiracies, UFO invasions, Global Warming and Brexit. IMHO, what ‘Jim’ (and the BBC) needs is a few GRINS! Why don’t you gatecrash the next episode disguised as the Dalai Lama with a copy of your book cunningly hidden up your robes, and then start a punch-up on the studio set? THAT would wipe the smug smile off old Jim’s face. AND it will put PMRGCAuk on the map Big Time - JOB’S a GOOD-UN?! (Big Ron, Redditch).
MB: thank you for sending me a copy of your book last week. Unfortunately, my ever hungry 6 month old Great Dane puppy, ‘Titch’, enthusiastically grabbed and swallowed it whole (Jiffy envelope and all) as soon as it emerged through my letterbox flap. To make matters worse, the book hasn’t ‘emerged’ from Titch after 5 days and, although he seems quite happy, he has become decidedly flatulent since 'woofing' it down. Can you tell me what type of paper was used in the printing process (bio-degradable, I hope!) - and also can you recommend a suitable vet for these types of canine literary digestive disorders? (Mrs Elkins, Barking, Essex).
Greetings Mr Brockenheim: ‘Oh Yeah, oh yeah’! If you pronounce this phrase backwards quickly and use your imagination it sounds a bit like ‘Yo yo’. Isn’t Life full of strange coincidences…?!!! Love the book - another Message from the Universe...? (Stargazer Pete, Glastonbury).
Dear Mr Benjamin Esquire: in your expert opinion, can one catch PMR from an ATM ('hole-in-the-wall' cash dispenser)? The reason I ask is that my lady wife recently used one to withdraw £20 at our local supermarket in Aldershot immediately prior to being mown down by a speeding, empty trolley hurled across the car park by a careless attendant. Since this unfortunate incident she has suffered from various aches, pains and PTSD, not to mention the ignominy of losing her false teeth in the process. We are just wondering who to sue for damages - Lloyds Bank or ASDA? Yours obligingly…. (Reginald J Peabody - Army Tank Regiment, Retired).
Ere MB, funny book, Ay, ay?! (Dave from Dartmouth).
Dear Mr Benjamin, I know you are now a well-known Writer and Public Speaker in our locality but I would respectfully ask you to cease coming into our store and shouting ‘CASHIER NUMBER 5 PLEASE!’ in a cheery Falsetto voice whilst hiding behind the Ladies’ knitwear display every Wednesday afternoon. We appreciate that you are a bit of an Eccentric, but this type of behaviour is causing great distraction to our checkout staff (comprising mainly Drama students) who for some reason find it hysterically funny - probably since we only have 4 checkouts here. If you want a job doing customer announcements in a retail environment, please contact our Head Office in Reading and it might help to brush up on your Maths in the meantime. (Jenny Smith, Manager, T K Maxx Weston super Mare).
Dear MB, having read and discussed your new book with my local PMRGCA Meet-up group, I wonder if you ever travel to our part of the country? If so, please be careful to watch out for the major roadworks on the A14 near Cambridge which are a bit of a nightmare and could delay your journey to wherever you might be going in the area. Hope this is useful info, best wishes.. (Marjorie Innes, Cambridge).
Mark, just a note to say I can’t tell you much I enjoyed reading your new book! That’s mainly because I haven’t got around to reading it yet. Next year, maybe.. Kind regards… (Sober Sid, Swindon).
Hi Bonkers Uncle Mark (‘BUM’) - thanks for your thoroughly entertaining book which also includes some helpful practical advice on alternative uses for it. I have successfully tried using the book as a handy Doner Kebab holder (opened at page 42 for optimum dynamic balance as you advise): but due to excessive staining from the Hot Pepper relish, it is now unreadable and so I intend to deploy the book as a draught excluder for the loose cat flap on my back door (by ‘loose’ I mean the flap, not the cat). Can you please advise what sort of weatherproof sticky tape I should use, bearing in mind the forthcoming cold snap? B&Q are rubbish at cat flap advice, as I have discovered. Many thanks…. (Kitty from Catford).
Well Folks, if you haven't 'lost the will' by this stage, you deserve a medal.
Keep smiling on the Journey - and keep WARM during the next week in the UK
Back soon, if you're not careful...
'Uncle' MB
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markbenjamin57
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Just had a quick glance through the old masterpiece (or should that be mantlepiece).
Have to say I could have done with it whilst loafing about for 6 hours in Singapore airport lounge last week - there’s only so many times one can swan around duty free and ponder whether one really needs the latest Gucci handbag 👜. Or browse the running buffet - perhaps another chicken satay - oh maybe not! I’m going to be fed AGAIN when I eventually get on that blasted plane✈️
I’d almost lost the will to live and I’m sure your book would have tipped me over the edge! Sorry saved me.............
Yours covertly
Commodore (Rtd) DL Auntie, SBS (Survivor of Bonkers Silliness) RM (NZ affiliated), Dorsetshire.
Greetings and Welcome back soon DL (aka etc etc etc..). Sounds like you've had a great time!
Probably a good job 'Immigrayshun' didn't catch you with THAT book on your person or you'd be banged-up for collusion with a dodgy foreigner masquerading as an 'Author'. Heaven forbid...
As you probably know, we have some of the Icy Ru**ian influence coming our way this week. Brace yourself when you arrive in the (suddenly) VERY cold UK - including Dorset!
Glad to hear from you. Thought you forgot about us with the book tour...all those autograph signings, interviews, cocktail parties must be keeping you busy...
Greetings Mr Brockenheim or Markus Bengeemax or whoever you are!
It would appear that there has been some form of 'edit' and my feedback has been obliterated from your blog! So, as those members of the of the Kremlin might say “be careful what you wish for” However to repeat my entry for those ‘bloggers’ who are slow of the ‘Mark’ it would possibly cause somewhat of a stir back in Glastonbury, so I won’t repeat my feedback, only to say. “Isn’t Life full of strange coincidences”…?!!!
Still can’t find your book on the list of best reads, perhaps you should provide a kindle edition to increase your readership and enable a poor pensioner with PMR like myself to be able to afford a copy? Or is it the fact that now your book sales are in double figures, you can retire to the Bahamas on your new found income and you don't care about the rest of us ??? - another Message from the Universe...? (Pete, but not from Glastonbury)
Only kidding Mark, have fun! rumour has it that you will be on TV soon!
Ah ha Pete, nice to hear from you - I wondered why you'd gone quiet again! Maybe the R*****ns are trying to tell you something..? Either that or 'Pete' in Glastonbury..
Yep, am thinking about a Kindle version of the book when I can get my Pred head around how to publish it that way without giving all the profits away (and retain a margin to donate to PMRGCAuk). Then I can retire to Bridgwater and live in the manner to which I'd like to become accustomed, i.e. selling the Big Issue with the obligatory 'dog on a string' by my side :-D. In the meantime, the physical version of the book is selling steadily, the 'book' website should be up and running this week, at long last.
I did in fact appear on TV a few years ago - when 'performing' in Ukraine (Kiev) at a Trainers' Conference. Ukraine's 'Business' Channel 24 turned up at the gig complete with camera man and lady reporter / interpreter. I did a 5 minute slot talking about 'Trust' being important in Business Relationships. 'Trust'... Business.. in Ukraine..? You couldn't make it up!! I still don't quite understand why they chose me, but at least I got out of the country afterwards without being arrested or worse... it was just before everything went upside down with the riots etc. The evidence is on my LinkedIn page. Of course, I've also appeared numerous times on CCTV if that counts?
Hope you're well and your replies don't continue to get sabotaged... how are you getting on?
I have now been on steroids for nearly 3 years and 4 month. I had PMR for probably 3 months before diagnoses.
Early on into my journey, one of my family members who has another painful autoimmune ailment suggested I join Healthunlocked because it might help me manage my condition of PMR which I did.
Since then the forum, for me, has been a remarkable mine of information, far greater than I could possibly obtain from my local GP’s.
From the various blogs which crop up I have learned how to manage my condition not only from the experts on the forum but also from the contributions from others who have described how they are trying to manage ‘or not’ their condition. Others such as yourself have also put a bit of fun into an otherwise miserable, but not in the main a ‘life threatening condition’.
I have been lucky, because just reading some of the others inputs on here, I realise that I could be far worse off. Don’t get me wrong I have or still having a battle with side effects which the Doctors say will disappear when I get off of Prednisolone.
Well that’s the trouble at the moment. I am still on 5mg but trying a reduction again. I’m on half way through the DSNS method and trying half mg reduction. But I can’t get through to 4.5mg without having to go back to 5mg because so far I get too much pain increase in shoulders and buttock area.
I had a Short Synacthen Test before Christmas which came back with a 548 nmol/L cortisol level. The Endocrinologist suggested that “that was an adequate response that the adrenals are capable of working”. My health centre has not discussed this with me only to say “that’s good! From now on reduce the pred at 1mg per month”. Need I say more!!!!.
So as I am having trouble reducing, I assume the PMR is still active, or is it that I am addicted to prednisolone ????
Anyway to answer your other question: “why I had gone quite again”. It wasn’t by design or desire. It has been more of as result of. If your eyes haven’t glassed over by now, let me explain.
What I was finding was that I seemed to be getting into a “rut”. All I seemed to be doing was looking at all the Healthunlocked entries, pages of them every day and filling my mind with nothing but PMRGCAuk. A one track mind was developing!!!
My OH noticed as well and it did not appear to be helping with my tendency to become depressed. So I decided to only open about one in ten of the entries and get on with doing more activities.
Fortunately the deathly fatigue has reduced, not completely but noticeable reduced. So l have got back to other interests and becoming more active. Putting my mind to other stuff and becoming more like my old self. Planning for the summer to come and looking forward to some holidays away.
Well that’s it in a big nut shell !!!
So I better stop writing, and give you a chance.
The last I read of your blog was that you had returned to 5mg from about 2mg because of returning pain?
Well what’s the latest Mark? Are you off the pred yet and PMR free?
I agree with you about this forum - a goldmine of advice, experience and support. But I also get what you say about being online (here or on social forums in general!) possibly becoming all-absorbing. That said, I know this forum can be a lifeline for many of us at various times... so perhaps 'all about balance', and in context?
Good to know you're getting out and about more - that must be a positive sign that PMR isn't 'taking over', psychologically at least! It's interesting, I've felt the same recently - an impulse to re-integrate with the world as PMR slowly burns out.
Yep, the sub 7.5mgpd Pred / PMR journey can be quite a slow and unpredictable one as I've discovered too, and as the Aunties always say. I was down to 2mgpd pre-Christmas - but with pain and stiffness creeping back incrementally, so I've nudged back to 5mgpd during the cold, wet Winter weather and will have another go at reducing when things warm up a bit. I've learned to roll with it and not worry too much about racing to Zero (Pred) whilst PMR still loiters around ('Symptoms Rule'). Like you, I'm at about the 3 and-a-bit years stage from diagnosis, and trying to be realistic about taking a further 12 months to be off the Preds and / or PMR going into remission. As always, we'll see, but I'm cautiously optimistic.
Also, like you, the DF (Deathly Fatigue) is happening less often and with less intensity (Phew..), so that must be a good sign that things are getting back to normal physiologically. The dreaded DF has been one of the worst symptoms for me - sometimes for days on end and Life seems to stop dead (excuse the pun).
You mentioned possibly being 'addicted' to the Preds. From what I understand, the Preds aren't 'addictive' in the usually accepted sense, maybe more a case of the body being (rightly) 'dependent' on them physiologically with PMR, and protesting when it doesn't get enough? That said, the terms 'addicted / addiction' are wide open to interpretation, so I'd better let the Aunties / other experts have the last word on that one!
I'm sure many of Us Lot of PMR / GCA survivors in the UK will feel better as Spring arrives and we get some warm, mild, relaxing weather, and top-ups of natural Vit D. Bring it on!
So, Pete, glad to hear your positive news - 'On, and Forwards'?!
Dependence with pred is because the adrenals have't caught up. It is physiological not psychological and once the adrenal glands catch up it isn't a problem. Providing of course the PMR has gone into remission...
When you say "once the adrenal glands catch up it isn't a problem" what's the meaning of catch up? If I had an adrenal function test which showed a good response to the Synacthen, does it mean that the Synacthen makes them respond, but without Synacthen the do not ?? and a dose of 5mgs stops them from waking up ? Oh this is really complicated!
Exactly - all the synacthen test shows is whether they are CAPABLE of producing cortisol, not whether they have achieved their fine adjustment. The actual production of the amount you need as you need it is far more complicated and involves a feedback system comprising several organs and hormones which all have to get back into balance. It is often called the HPA axis (hypothalamus, pituitary, adrenal) and also involves the thyroid a bit too, plus all their hormones etc.
You know those hat shaped swings on a kids playground where people stand/sit on them all the way round and swing a bit like a circular pendulum? Like the first one here:
If one person jumps off it won't oscillate in the same way and will swing about a bit until it settles down again. The HPA axis acts a bit like that.
5mg won't stop them waking up - it is less than the body needs so the HPA axis will start to respond but may not get the exact amount right straight away. All the involved organs and hormones will be a bit in flux and that will have an effect on how you feel. And the usual effect is fatigue. It all settles down at different rates for different people - and obviously it is disturbed every time you change the pred dose.
Which is why PMR-guru Rod Hughes likes to keep his patients at 5mg for several months to allow it all to settle down and the adrenal glands start working in a staged return to work. Once they have the hang of that - then you can usually do the rest of the reduction more easily.
Yes Mark, the dreaded fatigue, when my wife asked if I was in pain, mostly my answer was "I can deal with the pain, but this fatigue is really dreadful" thank goodness it's not a bad as it has been As you say 'On, and Forwards'?!.
For me, at least, the hardest bit of dealing with PMR has been mainly about psychologically handling the conflict between a Mind / Self concept that is normally geared to Action and Activity, and that of a physiology that is struggling energy-wise at all levels as a result of a chronic illness. I'm sure many with similar AI conditions would relate. It irritates me when some Medics and people who haven't experienced such illnesses put it down to being 'All in the Mind'. Humppphhhh
But, as you say, there is often light at the end of the tunnel with PMR - so long as we can make sense of Cause and Effect, keep a steady head, be patient, and see the Big Picture in terms of our progress overall on what is quite a long and difficult Journey health-wise.
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.
Kind regards… (Sober Sid, Swindon).
So, as those members of the of the Kremlin might say “be careful what you wish for” 
I Could Not Make This S**t Up!
Do you get increased side effects from Pred when you up it to deal with a flare? (GCA)
