The Reflective (for a change..) Side of PMR - 'A little Pome What I Wrote..' ;-)

[markbenjamin57]

Dear PMR Friends, Veterans, Comrades and Newbies here

Well, yes, I know that some of you are waiting day by day (as if..!) for my next 'Bonkers' post and injection of the Chuckle Factor to boost your (and my) sometimes weary spirits due to the ravages of PMR. All I can say is, I blame YOU LOT for encouraging me in the first place. Watch, and wait.. I have a Cunning Plan - but more about this later...

In the meantime, on my own Life-Changing Journey with PMR, and in between the many Lows - and a recent High - I've found myself in Reflective Mode (unusual for me) at times, and penned the enclosed 'Pome' when thinking about the stuff of 'Journey' on a quiet day recently.

This is dedicated to the many of you 'Friendly / Supportive Strangers' who, at the same time as recklessly responding my mainly silly ramblings (probably just to humour me...?!), have also given me inspiration and hope through your often, equally bonkers sense of Fun - and, more important, some reassurance that 'All will be OK'.

In the light of the recent, tragic events in the UK and Internationally (not to mention Brexit and the UK Prime Minister's widely-publicised choice of footwear), I hope the following will resonate with some of you at least. But, most of all, it's intended to express my thanks and appreciation for the spirit of Humanity, Support and Community that you have, in turn, shown to me on my unplanned and unexpected chapter in Life's Journey.

Here goes:

'Write Me Funny...'

Write Me Funny and write me True, help me to laugh when I feel blue

Weave your words to make me smile, cheer me up with your witty style

Take my soul and lift it high, from hurting and sad to a happy ‘Sighhh…’

Thanks for that Twinkle that sets you apart, and that gentle Fun that lifts my Heart

Bring me Faith and bring me Hope that once again I’ll be able to cope

Be my Guide like you always are, and 'hold my hand' - even if from afar

Help me to trust that things will improve, I place my faith in your every move

Lead me gently from this painful place, to one where a smile returns to my face

Who knows, one day we might meet?

For me, that would be the greatest Treat!

Until then, my message to you?

Just write me Funny, and write me True....

Ok, that's the more 'Serious' stuff over. But:(!): don't fall into the trap of thinking that I've suddenly become a Philologist or a Trick Cyclist (if those are the right terms?). I will be inflicting some very serious 'Bonkers' stuff on you again soon. Be warned... ;-/

Very best thoughts, and wishing all here a peaceful and successful 'Onward Journey' (as they say in the travel industry). As if they really know..?! ;-/

MB

[Margaret1951]

At least you fetch a smile to my face through the pain ! Keep up the good work x

[markbenjamin57 in reply to Margaret1951]

Many thanks Margaret - and some giggles too, I hope!

Try to keep smiling on the Journey

MB

[DorsetLady PMRGCAuk volunteer]

Doesn't scan as well as yours, but it only took a few mins -

There was a young(?) fellow called Mark,

Who wrote poems just for a lark,

His penchant for wine,

And excitable mind

Often found him asleep in the park.

- boom, boom,!

[markbenjamin57 in reply to DorsetLady]

Lovely, DL, I'm laughing like a drain. But less of the query about being 'young?' please? 60 is a proud age to be, and I can assure you that I only look 59

Many thanks, back to the park bench now... x

[DorsetLady PMRGCAuk volunteer in reply to markbenjamin57]

Wrap up,warm, it's a bit chilly...but I'm sure you've got teddy....🐻

[markbenjamin57 in reply to DorsetLady]

Yes DL, just teddy and me on our own again in the cold and dark (sniffling, whimpering etc)

Chilly or what in Dorset?! I'm in Poole at the mo...

[DorsetLady PMRGCAuk volunteer in reply to markbenjamin57]

Oh. It's your fault then is it?

[markbenjamin57 in reply to DorsetLady]

It was bright and light in WSM when I got there this morning. Then, back to Poole - and more change. Oh well - it's the 'seasonable' variations in the UK weather after all?!

n.b. / disclaimer: I deny all responsibility for the weather conditions anywhere - or anything else, for that matter...

[Chrissy1953 in reply to markbenjamin57]

YOUR in POOLE..... I'm in Poole. Blinking cold and wet in't it

[markbenjamin57 in reply to Chrissy1953]

Yep Chrissy, wild and windy here - again!

[SheffieldJane]

That is a sweet poem Mark thank you!

I hope you are still feeling as if your dragon is slain! 🐉

[markbenjamin57 in reply to SheffieldJane]

Thank you too, SheffieldJane Yes, so far, so good, but always ready for the Dragons! x

[Hidden]

You are AWFUL, but I LIKE you. ..shove. Well done Mark, again!

[markbenjamin57 in reply to Hidden]

Thanks Pete - maybe we should form a DEAS (Dick Emery Appreciation Society)? I can picture the reunions - 16, or however many of us all doing 'Mandy' impressions - "Ohhh You are Awfull..." etc!

[Hidden in reply to markbenjamin57]

Sounds a good idea, however we might all be put in the nut house and not just me

A good poem though, keeps us smiling and as DL implied, don't sleep on any park benches, you might find me on another one!

[Pat9442]

You wrote me funny you wrote me true

My best wishes from me to you

[markbenjamin57 in reply to Pat9442]

Thank you Pat - lovely thoughts

[Pollyanna16 in reply to Pat9442]

Boom boom 😂

[Brixhamhampster]

Lovely poem mark Benjamin 57. Raised the mood during these difficult times.

[markbenjamin57 in reply to Brixhamhampster]

Many thanks Brixhamhampster - all part of the service

[trish29]

Hi markbenjamin ..you have made me smile with your wonderful sense of humour..I have spent months shedding many tears so it's a good tonic to smile..Keep the humour flowing ..we can't let PMR etc beat us . trish29

[Joyful13]

Thanks markbnjamin 57. After a particularly difficult day, your poem soothed my weary soul. Oh, we do need humor and laughter on this journey. Keep on keeping on, Mark. best to you.

[Jean56]

Bless you for the smiles and the laughter. This has brightened my morning, for me not the best time of the day. We're staying at Dorchester so have been suffering the rain and high winds. Plus the gradual reduction in steroid medication is not doing a lot for my patience, I'm very short tempered. My poor long suffering husband will testify to this! I do try to count my blessings but some days it's hard. I'm down to 8 on the Very slow reduction plan. So far so good, a little worried about the next drop to 7. Can only try. Keep up the good work. The world needs more laughter.

[DorsetLady PMRGCAuk volunteer in reply to Jean56]

Welcome to sunny Dorset! As the saying goes - 'you should have been here last week, the weather was lovely"

[Jean56 in reply to DorsetLady]

We were in Devon last week, likewise weather was good. We have a caravan and spend several months a year being 'old age travellers.' Dorset being our favoured choice of destination. I find life in the van easier than home. It's away from the tyranny of the housework, garden and telephone! Small space. I can sit read and knit without guilt.

[DorsetLady PMRGCAuk volunteer in reply to Jean56]

If you're staying in a caravan park near Dorchester, bet you're not far from me! If so, it's raining again.

But enjoy as best you can!

[Tj2017]

Wonderful and joyful poem. Thanks Mark on the park bench. I happen to think sixty is a great age. Same as my hubby!

TJ

[mzz70-70]

Bonkers, yes, but you make me smile and I look forward to your next 'bonkers' piece of work. Who knows you could become 'Poet of the year' now that would be something wouldn't it. xx

[Janann25]

Having only recently joined this forum, I have only just been "introduced" to you but already this post has made me laugh - something which I desperately needed 😀 Thank you so much and I'll look forward to our next "meeting" !

Jan

[sailorman]

Thank you that is great.

Mike

[Janll]

Bless you Mark! The day ahead will be brighter, thanks to you. Weston is looking grey, wet, cool and most unwelcolme. This is June isn't it?

[Jackoh]

Well- this poem was a bit more serious than your previous renderings. Was very thoughtful and encouraging I thought Mark. Always enjoy your posts - thought this poem was excellent. Hope you're collecting all these renderings for your book" The lighter side of PMR"

We all want to come to the signing ceremony after publication!!

Best wishes Jackie x

[El50]

Brilliant Mark-- Encore???

[DorsetLady PMRGCAuk volunteer in reply to El50]

Oh! Don't encourage him! It only means trouble.

[altywhite]

Lovely.

[Patience_1]

Thank you markbenjamin. This one made me cry despite also being uplifting, very touching.

[Hidden]

Well Mark, somehow you've managed to sum up the love, thoughtfulness and generosity of total strangers on this forum with your incredible pome...so pleased to hear your progress is still on the good side and I wish you all the best.

My own journey began in January this year and in that time you've made me laugh. ..something which doesn't come easily when all you want to do is scream, so fangs for all the memories!

ps It's raining in Bolton too...off dogging later. ..NO NOT THAT KIND...the one with chains, leather, studs, like minded people, oh and dogs. ..lol

Meggie

[markbenjamin57 in reply to Hidden]

Sincere thanks Meggie

The best reward for me in these ramblings is when I can help a few of 'YOU LOT' giggle - or maybe just ease the pain. In return, you help me too with your lovely responses. I feel very humbled by all of this...

As for the 'dogging' reference (!) - I'll share a very funny story with you about this if you like. It's not at all sinister - just a very funny experience I had when I was a Road Safety Awareness trainer for public audiences in conjunction with the Police.

To give you a clue: an attendee on a RSA course once gave me a reason why drivers might flash their headlights to other, oncoming drivers in a wooded, rural area of the country. I'll let you link this up with your reference..!

MB

[Hidden in reply to markbenjamin57]

Mark

Very funny...lol..must have been difficult keeping a straight face!

There have been a few times when this topic has caused laughter and occasional disbelief that I, the unlikeliest person on the planet, could do such a thing!

Not that I do of course. .. except with my cute canines...

As they say, laughter is the best medicine.

Keep smiling

Meggie

[markbenjamin57 in reply to Hidden]

Many thanks Meggy!

Yes, it was hard to keep a straight face

The funniest experience, when I was once working as a Police-associated Speed Awareness / Safety Trainer, was in delivering a public course when the agenda included facilitating a group-discussion on why drivers exceed the UK National speed Limits - and also put themselves at risk of not only getting speeding convictions but also harming others on our highways

Amongst the usual reasons people gave for not seeing and or / observing speed limits (e.g. 'not concentrating / being un-aware of the speed limits' etc,), a young-ish but charming 'Lad' (Jack) piped-up saying: "I was on a 'promise' with my new girlfriend and couldn't wait to get to her place !!".

The entire group - from age 18 to 80, and from all walks of life, fell-about laughing and applauded him for his honesty. Clearly, they could all relate at one time or another in their very diverse lives..!

Now, for Confession Time. On subsequent courses, I used some artistic license and adapted the 18-year old Jack's original story by saying to other audiences that it was, in fact, from a client called 'Jack' aged 80..

Again, it brought the house down. But, and more importantly(?), these funny stories brought some humour - and some humanity - to an important dialogue.

As many of us here say, Laughter is the best (and sometimes the only available?) Medicine on LIfe's Journey..

Happy Days

MB

[Hidden in reply to markbenjamin57]

Thanks Mark

It's nice to chat with others and give into a smile and good old belly laugh now and then.

Your stories are very entertaining and I'm sure a book is lurking somewhere in your brain, so think about it. Betting lots of folk would love to read it. ..your life experiences and clear enjoyment of your job would would certainly entertain.

I used to work in a pharmacy and you would not believe how many people were willing to show me bits of themselves in front of other customers. ..presumably because I wore a uniform and looked like a nurse. ..now that required a straight face! ;-).

[markbenjamin57 in reply to Hidden]

Hi Meggie

Thanks to you too - this reminds me of the old saying: 'A smile is the shortest distance between two people'.

As for the book.. well, I have 'YOU LOT' to blame for your lovely responses to, and encouragement of my many Bonkers posts here - it's work in progress. Yes, seeing the Lighter Side of PMR (and Life's Journey in general) has got me through quite a few tough episodes in both.

I love your take on the uniformed 'expert', and can relate to trying to keep a straight face. In my corporate group-training work around Behavioural Styles and Differences in various contexts, I often (with tongue firmly-in-cheek) ceremoniously put-on a doctor's 'white coat' when I facilitate a session (not that I'm a Doctor or a Psychologist!) and it brings a smile to the audience, since they know that I'm not one really.

But the best bit is, when I give the revered and symbolic 'white coat' to someone in the group and ask THEM to explain the complexities of Human Behaviour and Communication, they suddenly become the 'expert' in the eyes of their colleagues too - priceless!

All of this reminds me, as always, that smiles and laughter can be the most powerful medicine of all - especially in coping with Life's many changes and challenges.

Food for thought, for all of us here perhaps?

MB

[Hidden in reply to markbenjamin57]

Mark

Thanks for your reply, I can relate to the 'white coat' effect. ..my ex boss hardly ever wore his white coat as a Pharmacist, yet when a disruptive customer saw him in it the person concerned immediately became compliant. Fascinating.

And as for US LOT...you make us smile, so it's all your fault. ..so keep posting those long witty posts you never have time for. lol Smiling like a loon...Meggie

[markbenjamin57 in reply to Hidden]

You bet Meggie!

Back here soon...

[S4ndy]

Just love it Mark, keep up the good work

[markbenjamin57 in reply to S4ndy]

That's so kind of you S4ndy, I'll try!

[Rugger]

I was weeping this morning - maybe my adrenals are to blame now I'm on 4mg or it's the painful shoulder joint ?bursitis - anyway, your pome made me weep more, but in a good way! There are good people in the world - the woman at the dry cleaners has just ironed a duvet cover for me even though "we don't do bedding". She must have seen my face, so she did it but couldn't charge me, but fortunately they had a charity box on the counter. (I don't iron duvet covers either, but we've got American friends visiting on Monday.) Babs has already said she'll dust and Ken will vacuum - yes, they really are called "Barbie/Babs and Ken"! I'm cheering up now, thanks to you, Mark and the kindness of others.

[Patience_1 in reply to Rugger]

Isn't it amazing how many things you can find don't need ironing any more?! And after all, bedding only gets creased as soon as you climb in -)). Hope you have a relaxed and enjoyable time with your visitors.

[Rugger in reply to Patience_1]

Thank you, Patience. We're looking forward to seeing them - just hope this rain stops for a while! I am a minimalist ironer but was making an effort for guests.

[markbenjamin57 in reply to Rugger]

Thank you so much, Rugger

[PMRpro Ambassador]

Funny - on another forum we've just been discussing the approach of the full moon tomorrow ...

[Baileyw06]

Thanks,you make our journey easier 😊

[Sandradsn]

Wish I could write pomes,thanks Mark!!

[markbenjamin57 in reply to Sandradsn]

You can Sandra, just let yourself...

[shella]

You are a poet and don't you know it! Lifted my spirits - and as they say laughter is the best medicine - so give us more!

[markbenjamin57 in reply to shella]

Ah, thanks Shella! Yep, will be back soon to inflict more on 'YOU LOT'

[BlueLara]

Wonderful1 thank you and very best wishes to you. M

[markbenjamin57 in reply to BlueLara]

No worry SMuppet, all 'part of the service'

Keep well - and smiling too!

MB

[BlueLara]

Keep writing, MB! A new career beckons as you are a mere youngster (compared to me, anyway). And it's so nice to see the banter between you and DL and others! M

[markbenjamin57 in reply to BlueLara]

Thanks so much M

As for writing here (if you can call my Bonkers ramblings 'writing'), all I can say is: be careful what you wish for..

In truth, the banter shared with 'YOU LOT' here has brightened my tough days more times than you might imagine, and it's a privilege to contribute to it even though I can't offer any technical / medical advice on PMR / the Preds etc.

Now I've made a seemingly major breakthrough with the numerous and confusing symptoms of PMR / the Preds, I'm primed for another Post. 'A cunning Plan..' etc.

Thanks again, back soon (if YOU LOT aren't careful...) ;-D

Best thoughts to you, and all here in the meantime

MB

[Hidden in reply to markbenjamin57]

Mark, you have gone desperately quiet What's up doc

[PMRpro Ambassador in reply to Hidden]

He's probably lying low and hatching his cunning plan.

And it is Friday night ...

[markbenjamin57 in reply to PMRpro]

:-D. You know me too well PMRpro!

[Hidden in reply to PMRpro]

Yep, and it's wine night, or is that every night with his teddy. If he reads this he'll slaughter me

Happy days

[markbenjamin57 in reply to Hidden]

Ha!

Well, it IS Friday night after all, and after a very successful week all round (i.e. symptoms-wise and projects / missions completed).

So, it's wine opened (dry red), dinner cooking (oven baked LIDL Southern Fried Chicken + fresh vegetables), and re-connecting with my trusty Associates in PMR Crime here - and feeling very happy.

As for teddy... no sign of him :-(. I think he's either gone AWOL or is just fed-up with my recent antics / abandonment of him and taking refuge at the local Boozer again...

MB

[Hidden in reply to markbenjamin57]

[markbenjamin57 in reply to Hidden]

Hi Pete

Ahh, thanks for your concern.

The good news is, I'm still feeling great (unusually so..) but just busy this week on an interior decorating mission for my dear retired sister in Dorset. Much of the stuff of ceiling coving-putting-up, making-good / painting walls and ceilings, installing new furniture etc.

The (still) strange thing is: despite 'going at it' physically for a few days, my energy levels are suddenly, dramatically improved - and continuing despite the recent (ill-advised) 30% reduction in the Preds. I think you hit the nail on the head about why, but as always, 'we'll see'. Better not upset the Aunties here!

Don't worry - despite my newfound, old 'Action Man' self, I'm re-grouping this weekend and will get back to my Cunning Plan to entertain YOU LOT with some more mirth soon. Be warned...

How are things with you? I know PMR is a tortuous and unpredictable journey, but there CAN be light at the end of the tunnel. Have faith... and patience.

Will be about over the weekend - never far away, or for long.

MB

[Hidden in reply to markbenjamin57]

I'm on 6 .5mg now. Fatigue still main problem, steady as she goes. I still can't understand your remarkable reduction and almost symptom free. I think it mus be some kind of miracle.

Stay well

Pete

[markbenjamin57 in reply to Hidden]

Pete

I well-know, and also still can't quite understand the reason for this sudden, dramatic and continuing turn-around in my symptoms. It's quite astonishing...

In my experience, the dreaded DF (Deathly Fatigue) is the worst of all of the symptoms associated with PMR and / or the Preds. But, as our 'Aunties' (!) say here , we are at a level of Pred reduction (7-ish mgpd +/-) where all sorts of things can happen either way.

Yes, it feels like a Miracle after 2 years of Battling with the Dragon (q. Kate Gilbert). I'm making no assumptions, but 'miracles' do happen.

My advice? Just hang-on in there and be patient, let's hope you're in for some nice surprises symptoms-wise soon (-ish..) too.

Fingers crossed, always here in the meantime

MB

[Hidden in reply to markbenjamin57]

[markbenjamin57 in reply to Hidden]

That's my boy - get out and polish (but gently..) that lovely Merc SLK tomorrow in the sunshine - it'll do you good!

[Hidden in reply to markbenjamin57]

Ha Mark, what's this boy stuff? my kids call me an old man.

I'm off up to Stafford from Cambridgeshire today in the SLK to see mother in law. polishing will have to wait. but I would rather do the polishing

Just one question, has the fatigue disappeared as well as the other improvement ?

Enjoy the sunshine! and keep that smile going

Pete

[markbenjamin57 in reply to Hidden]

Hi Pete

Shame we're not closer, I'd come over and give it a VIP valet for you.

Yep, the fatigue (deathly variety) has gone too. The most I feel is 'nicely' tired after being physically active. It really is a dramatic (and sudden) difference all round - fingers crossed it will continue..

26 degrees forecast for most of the UK today, have a good trip!

MB

[PMRpro Ambassador in reply to markbenjamin57]

I would say it sounds as if your adrenal function has got its act together - and the PMR is at least relatively quiescent if not gone (never take anything for granted).

The local head of medicine says in his experience if you reduce to below the threshold slowly enough that adrenal function almost always returns. There are plenty of people who never have the fatigue problem, others for whom it is overwhelming for a time.

[markbenjamin57 in reply to PMRpro]

Thanks PMRpro, it feels like both things at once. 2 weeks now, and virtually no pain, stiffness or DF (deathly fatigue) despite being quite (ok, very - due to feeling so much better) busy / physically active.

I was going to ask here: typically, are PMR acquiescing / going into remission and restored adrenal function inter-related, or independent of each other? But I think you may have answered this above...

As mentioned, the paradox is: having upped the Preds to 7.5mgpd from 6 but feeling significantly worse (usual symptoms plus slight nausea, woozinesss etc) for 2 weeks, and then experimenting with a sudden (if adventurous) drop to 5, the almost total relief from all symptoms was pretty well instant / overnight.

I'm staying on 5 for now, just in case, but feeling marvellous - almost 'normal'. I'd forgotten what that's like!

[PMRpro Ambassador in reply to markbenjamin57]

Separate - the PMR is due to an ongoing autoimmune disorder which can and does go into remission. The adrenal function is getting all the bits of the process balanced out again - it involves the pituitary and hyopothalamus glands and affects the thyroid as well, a whole load of different hormones to get in the right proportions as well as persuading the adrenal tissue to wake up and do some work!

And yes - pred is well known for skin effects, including acne.

[markbenjamin57 in reply to PMRpro]

Ah, thanks PMRpro, that's really helpful to know.

Sounds / feels like I've hit the jackpot then, i.e. both at once? :-). As you suggest, I'm not taking anything for granted - but it really is quite a sudden and astonishing turnaround in all of the symptoms. Phew....!

But now that I'm feeling so much better, don't think I'm going to cease continuing to inflict serious Mirth on 'You Lot' here. In fact, with my renewed mental energy, things could get even worse. Be warned..

MB

[markbenjamin57 in reply to PMRpro]

PMRpro

Forgot to mention re. symptoms..

I've also had regular skin infections throughout PMR (spotty face / acne type infected 'boils') - I guess a side effect of the Preds? These have also totally disappeared since dropping to 5mgpd...

[BlueLara]

Thanks - and looking forward to the "cunning plan"! M

[markbenjamin57 in reply to BlueLara]

Be careful what you wish for M...!