The Lighter Side: Zen and The Art of PMR & Pred Tapering - An Intellectual Conversation with 'Tedski..' ;-)

[markbenjamin57]

Greetings to all VIP Members of The PMR and GCA Pred Club and / or Pred Club Zero - whichever side of the fence you sit on, used to sit on, want to sit on, never sat on in the first place, or might sit on one day. All I can say is, if you’ve got this far, you’re doing well…

Ok ok OK! So I was recently re-reading Robert M. Persig’s critically acclaimed 1974 novel ‘Zen and the Art of Motorcycle Maintenance’ and it occurred to me to run his Existential Dilemma past my trusty Companion and Manservant, the venerable ‘Tedski’, whom some of You Lot might have heard of in my tales from ‘Behind The Sofa’.

Since Tedski has accompanied me on my 3 year PMR Journey, I thought he’d be a good sounding- board for my Persig-style thoughts about how best to survive PMR, The Preds and all that goes with it / them. Here’s a transcript of our conversation last Saturday evening:

MB: Ted, I’ve been reviewing my spreadsheet data analytics and have found an anomaly in the statistically adjusted correlation between cumulative Pred dosage, periodic incremental tapering gradients and a seasonal aggregation of reported PMR symptoms according to an acknowledged Mean Distribution Curve. There appears to be a 2.5% Randomly distributed Variability across the board - what do you think?

Ted (shrugs shoulders impatiently): Never mind all that MB. I’m off-duty after cleaning the Limo for the second time today. Just pass the Fags (cigarettes) - I’m gasping for a smoke!

MB: But Tedski, I need to make some rational sense of my intricately constructed Hypothesis about the Science around PMR management and Pred tapering. This is Medicine after all, and Medicine is a Science - Ok?!

Ted (casually lights cigarette and exhales slowly): ‘Boss’, listen: I know you want to make sense of all this with your Digit Head on. But you’re going about-it the wrong way. Just Chill. Don’t ‘over-think’, and go with the Flowski. There are some things in Life that we can’t understand or control - including PMR and Pred tapering regimens. Now, how about a glass of the Red Stuffski?!

MB (now irritated): Listen-up Schmuck, I employ you as a ‘Yes-Man Tedski’ - don’t go against me. You’re a Smart Cookie. Cut me some slack and stop ‘conflicting’ me! No discussion, no Red Stuff. END OF! I DEMAND Loyalty from you…!!!

Ted (sarcastically): 'Boss', wind your neck-in. If you want a Scientific explanation for 100% successful PMR Pred tapering, go hang-out with some ‘proper’ Scientists for the next 20 years - or maybe forever? Now, pass me the (TV) remote, I want to watch Sky. It’s the ‘Ladies of a Certain Age International Mud-Wrestling Championships’ tonight. I’ve got a large bet on even larger my sister, Olga. She’s a Champski!! And Gimmee Gimmee GIMME some more Red Stuff NOWski!

MB (now enraged): Look Ted, if you can’t take this seriously I’ll…. Grrr… er… (impulsively hurls a signed copy of the ‘Write Me Funny..’ book at Tedski from in front of the sofa).

Ted (defiantly): Ouchski MB!!! But if that’s how you’re going to play it, I have the only spare key to your treasured Limo, and also your personal ID and credit card details. I fancy a bit of an adventure - I could probably get back to our home town of Slovensk in a couple of days - if there's enough fuel in the tank? Olga likes Limos - she imports and sells them for (q.) ‘a Goodly Prrofeet’ to her friends there!

Ironically, despite the initial Conflict between myself and Tedski, the remainder of our initially gentle Philosophical Conversation is resolved by a massive (and mainly comedic) punch-up between the two of us lasting well into the evening.

That said, the ensuing Fracas was conducted by Queensbury rules on both sides, with regularly agreed breaks for top-ups of The Red Stuff, Fag (cigarette) breaks and the self-administration of Olde English Pork Scratchings to keep-up each side’s Fighting Strength. And not forgetting, the odd ‘peek’ at the ‘Ladies of a Certain Age… etc’ on Sky TV by both parties in between the eventually friendly hostilities.

So, all considered, and as we say in the UK’s west country, ‘Job’s a Good Un’ ;-

My conclusion(s) to the ‘Zen and The Art of…’ Question?

Try not to take it (or yourself) too seriously in the process of ‘Seeking to Understand’. Yes, there are some things in Life - and with serious illnesses like PMR and GCA, especially - that we want and need to rationally understand and / or seem to have some relative control of in the management of them.

At the same time, there are some things that we can’t understand and / or control - even with our best efforts and the currently available research and knowledge about these things. We can only live in Hope…

So: we are often dealing with our personal ‘Zen and the Art of Paradox’ at the same time as living with a Chronic illness. I.e. Ambiguity and Uncertainty in how to most effectively manage our PMR / Pred tapering process even with the best information and intentions - and also how to Cope on this often unpredictable Health Journey.

Perhaps Tedski is right? I.e. ‘Learn to Chill and go with the flow’? He might just be on to something.. ;-).

My money’s on ‘Coping Strategies’ as one of the best Survival Mechanisms - and having some Fun in the process must come into the equation too.

Either way, Best Wishes All, and try to keep smiling on the Journey

‘Uncle’ MB :-)

[Sandradsn]

So many long words! So bonkers😄best wishes to you too😂

[markbenjamin57 in reply to Sandradsn]

Thanks Sandra, I'll take that as a compliment. Keep smiling

[CT-5012]

Far too many long words, can’t sleep, pred head on, going back to bed. 😴

[markbenjamin57 in reply to CT-5012]

Very sensible, CT...

[Insight329]

I always loved the concept and title of that book. I’ll be honest, It’s bedtime and I was skimming your post with thoughts of revisiting it when my brain wasn’t already going in ‘don’t make me think mode’. However, i got to the section starting with My conclusions.. and it was like something told me, ‘Wake up. You need this message.’ i’ve have read from there on twice and will probably come back and read it another couple of times. I’ll just say that your message hit a target. Your words ‘we can only live in hope’ jumped off the page to me. Thank you!

[markbenjamin57 in reply to Insight329]

Thanks Joy :-). Well, I usually try to weave a little of my own wisdom into the silly stuff. The business of dealing with Uncertainty (as well as everything else) seems to touch a nerve with a lot of us...

[Hidden]

Certainly chilled here Markski. It's bloody cold. Cheers.

[markbenjamin57 in reply to Hidden]

[Hidden]

As always... I'm lost! My American brain, just can't comprehend...

Who's Tedski?

[Rugger in reply to Hidden]

His teddy bear!

[markbenjamin57 in reply to Hidden]

'Tedski' is my new name for Teddy since I discovered he might just have Eastern European origins.... ;-). It's not your American brain, more about my silly SOH

[York54]

Sorry, I'm lost too, my pred head won't function!! Lol😏😏😏

[karools16]

Phew! Poor Tedski. My sympathies are with him.

[markbenjamin57 in reply to karools16]

Ha, karools! Don't be fooled. Tedski is a Master of the Art of, er, various cunning stuff - a bit like Cato with Chief Inspector Clouseau in The Pink Panther Movies...

[maria40]

Thank you Mark, very entertaining. I had a bookshelf clearout a few months ago and thought I too would reread 'Zen and the Art of Motorcycle Maintenance'. Settled down on the sofa, read about 20 pages and had the best nap I'd had for a long time. But I can remember how exciting it was at the time but my brain was younger and pred-free then!

[Hidden in reply to maria40]

I remember reading it...just have no idea what it was about now. : (

[Insight329 in reply to Hidden]

If I'm remembering right, it's about living in the moment (where the zen come in to play). It's the journey that's to be celebrated, not the arrival. That even the 'chores' leading up to something, ie. maintaining the motorcycle for an anticipated trip, is to be enjoyed. But I could have that totally wrong as I think that was from the 70's and who knows what my brain was on then...and we all know what it's on now.

[markbenjamin57 in reply to Insight329]

I think you've hit the nail on the head! But easier for some of Us Lot than others, regardless of the Pred! I agree, 'Journey' is sometimes more important than 'Destination...

[Insight329 in reply to markbenjamin57]

Your post gave me a lot to think about last night. It was like an 'aha' moment. I'm putting wayyyyyy to much pressure on myself to 'figure this out'. Before diagnosis, I'd always been really good at living in the moment, i.e. noticing beauty around me, birds on a telephone wire, animals in fields, stuff like that. But I'm so busy in my head since being diagnosed that I'm losing the joy of the everyday.

On a side note, I had lunch with a good friend on Saturday. We get together about once a month and our schedule is always the same: Korean food, then coffee shop, ending at a large oriental grocery store for grocery shopping and looking at all of the hmmm..interesting (somewhat strange in my book) food items. So the lunches are about 4 hours long. I was tickled pink that it took him 3 1/2 hours to ask how I'm doing. I told him I'd talk about my sick-journey for 2 minutes and that was it. I talked about it for 3 minutes but that's because he kept asking questions. But I was thrilled that he didn't say "How are you feeling" when he first picked me up. THRILLED!!!! He said when he calls next he'll make a note not to ask how I'm feeling but will start with "Well, I see you are still alive." As morbid as that sounds, it gave me a good laugh.

[markbenjamin57 in reply to Insight329]

Yep, and of course this might (I stress Might..) depend on our Personality Profile as much as the ravages of PMR etc.

It makes sense to me that a sudden-onset Serious / Life changing illness (or other, similar circumstance) puts a massive load (Stress) on our psychological and physiological resources. In my academic studies, I learned that for many species (Humans included!), the idea of Homeostasis (i.e. maintaining a Steady State) is important to survival and relative contentment, even if all is not perfect.

It's suggested by some experts that many (but not all) of us need a sense of Steadiness and Predictability to feel comfortable with our Existence (even if we complain about the 'Same old, same old' factor sometimes!). But this is a very complex topic and, again, it depends on the Individual.

Sounds like you had a good 'being' day with your companion and he's tuning in to you!

MB

[jinasc in reply to markbenjamin57]

I like 'Roller Coasters'.

[markbenjamin57 in reply to maria40]

Ha, thanks Maria :-).

[bunnymom]

You hit it right on the head. We are constantly trying to figure out something that is beyond us. One thing that time with PMR has taught me is to relax.......I am floating down the lazy river.

[markbenjamin57 in reply to bunnymom]

Yep, and you know what that can cause? (Clue: STR**S)...

[bunnymom in reply to markbenjamin57]

I have read that somewhere lol

[Maisie1958]

Thank you very much for this markbenjamin57 - the conclusion part was exactly what I needed to hear today-I’ve been getting increasingly exasperated with myself/PMR recently as seemed to have “stalled”...definitely feel 100x better than I did 3years ago when diagnosed, feel at least 10x better than two years ago but not convinced I’ve improved much in the last year! I know I’m extremely fortunate compared to many people on this forum but just hoped PMR would have gone completely by now! I still like to think I can control life. Time to count blessings now 😊

Thanks Mark, again this forum has helped me along. Been playing with pony this afternoon and going out for meal tonight to celebrate husband’s birthday so plenty to smile about really.

All good wishes.

[markbenjamin57 in reply to Maisie1958]

Thanks Maisie, all part of the service :-). Enjoy your evening!

[DorsetLady PMRGCAuk volunteer]

Hi Markus,

Of course Tedski right!

What you don’t realise that when you thought he was cleaning the Limo he was actually online watching my new video - “Learn to Chill and go with the flow”!

What he actually didn’t grasp was that the bubbly needs to be chilled and if you have enough there’s no problem to go with the flow!

Started chillin’ in the sixties (1960s that is) and still doing it now!

Lady of a certain age -

but in the words of the Troggs (there’s a blast from past and from my home town, knew them before they were famous, one quite well!) - “I can tell by the way you dress you’re so refined” - (With a girl like you).

Not quite in the same league as “Zen and the art of.......” but......

[markbenjamin57 in reply to DorsetLady]

Ha DL! So that's why the Limo's still grubby. I thought his valeting skills were slipping!

Well, yes. 'Zen and..' etc was a bit highbrow at the time. I was more into The Beano and Hitch Hikers Guide to The Galaxy

Keep on chillin...

[enan-illuc]

MB,

Loved it! I agree with Tedski "Learn to chill and go with the flow". Give my regards to Tedski and Olga and thank you for the laughs.

EI

[markbenjamin57 in reply to enan-illuc]

Thanks El, Tedski's not as daft as he is hairy. And as for Olga...? The mind boggles!

[Grants148]

I think Tedski is a very wise bear,we really do have to just ‘ go with the flow ‘ and try to keep cheerful,the alternative is too depressing to even think about.

[markbenjamin57 in reply to Grants148]

Yep Grants. I must confess to feeling pretty depressed a few weeks ago and contemplated putting my head in the oven. But I then realised that it's electric, so another of my cunning plans thwarted (luckily!)

[Grants148]

Oh Mark,you really must not ever think of such things again,what would poor Tedski do without you ? ,and what would your loyal followers on this site do without your humourous ramblings.l am sure that one of us would be brave enough to adopt Tedski but we really would not want to have to do that,so please keep on smiling.

[markbenjamin57 in reply to Grants148]

Thanks Grants. Only joking, honest! Anyway, Tedski is too valuable to me - and he also knows too much about me for my own good ..

MB

[Grants148]

You will have to write a book about Tedski Mark,look how famous Paddington became.