The Lighter Side - PMR for 3 Years and Welcome Ba... - PMRGCAuk

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The Lighter Side - PMR for 3 Years and Welcome Back 'pastit' (aka Petee!). More thoughts... ;-)

markbenjamin57 profile image
β€’18 Replies

Hi Pete / all here

This is a really interesting thread - thanks :-). I've repeated it as a New Post for the benefit of others here - with a mention to you as the Originator.

Yep, the DF really is a 'killer' (excuse the clumsy pun), and I can relate. I've also been dogged with it - who hasn't?! - throughout the last 2-ish years of PMR, to varying degrees and at different times, sometimes regardless of the best of Pred tapering plans, pacing strategies etc. And, yes, it really CAN get you down... :-(

Many of Us Lot understand more-or-less what the usual conspiracy of causes of PMR- related DF are: a Chronic AI illness / powerful drugs to manage the worst of the physical symptoms / the associated hazards of the tapering process whilst weaning-off / withdrawal symptoms etc: and that SHOULD help a little in the coping process (i.e. to feel less confused / guilty / desperate maybe?).

But the real paradox / challenge (for me, anyway), is that feeling any or all of Wiped-Out / Demotivated / Zombie-like / etc. so regularly despite our best efforts can also be quite stressful Emotionally - despite having a logical rationale as to why.

It's not necessarily a 'Man' thing (before the Aunties intervene..!) - I'm sure that anyone would feel the same regardless of gender or age, and even if the DF isn't associated with an even more serious illness.

As is well-known, Stress is one of the main Enemies of PMR - and Stress is Defo a contributory factor in mental, emotional and physical Fatigue at the best of times. Mmmm....

So, how to break the seemingly endless 'DF = Stress = More DF = More Stress' etc. Vicious Circle? Well, no Magic answers (I wish!) but there's plenty of wisdom here at least (pacing, spoons / diet etc). These practical things can help a lot... :-)

Maybe what many of Us Lot also have to TRY to do is to keep in mind (even when we have a break from the symptoms, as did I, recently) the reality that we DO still have quite a serious and long-term - if not Life threatening - illness. And, that 'recovery' is usually an equally long-term and often unpredictable process - despite our best plans and efforts. PMR / GCA are not like the Flu or minor injuries / ailments, where we usually bounce back in a few weeks. But, again, many of us already know that, don't we?! ;-)

My best analogy for surviving PMR (not forgetting GCA) is to think of ourselves as being unwilling players in a game of Physiological, Cognitive and Emotional (especially?) Snakes and Ladders - where the dice are sometimes loaded against us despite our best efforts and strategies to 'win' the game.

So many people here seem to complain about the indifferent responses and / or negative / unhelpful attitudes and advice from their GPs / family doctors in how best to manage PMR and the steroid tapering process in the best interests of their patients, in context.

All I would say to this is: if you are unhappy with your GP's approach to you and your PMR / GCA, push, push, PUSH then for the reassurance / blood tests / other diagnostics etc that you want, need and deserve.

On the Positive side, it's said that, for many PMR / GCA sufferers, the condition can and often does go into remission - eventually. I know that's little consolation to some of the long-term, hard-bitten and courageous PMR / GCA Veterans here, but it might give the rest of Us Lot some Hope in the meantime.

As some of you might already know, I'm not a great believer in Hope and Belief being the answer to all things Medical, Mortal and / or Existential - but our Mindset and / or Philosophy can maybe help us to 'Roll with things' in the meantime? And, of course, being able to have a few smiles and laughs on the Journey can't do any harm either. That's partly why I write some of this nonsense here ;-)

Ok, that's enough of the serious (but important) stuff. In case you ask, yes: the wine's open here at Benjamin Towers (never before 7 p.m.) and a good, hot, Man-sized dinner in the oven (eating and drinking lots, and well - essential for treating Man Flu).

I'm Home Alone - Teddy's out on the town (again!) and says he's 'on a promise' with the Barbie doll he met last week at the supermarket... Hummmppphhh

, some people get all the Luck! :-D

Keep smiling All - On, and Forwards?! ;-)

MB :-)

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markbenjamin57
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18 Replies
β€’

Well Mark, you sure have a way of telling it. Clearly many of us will get consultation from this one. Someone said it's all in the mind and due to laziness. Obviously they were joking 😢

Keep smiling πŸ€—πŸ˜‰πŸ˜€

SheffieldJane profile image
SheffieldJane

That all really resonated with me Mark, especially the snakes and ladders thing. With the best will in the world you can be progressing quite nicely and suddenly a roll of the dice and you slither down a snake due to an external stressor that you couldn't have planned for. But like Incey Wincey spider " out comes the sunshine and dries up all the rain, and Incey Wincey spider is climbing up again!" πŸ•·

If at first you don't succeed try try again ( Robert the Bruce) while watching a spider trying again and again to make a web in an awkward corner of the cave he was hiding from the English in. Scottish hero for those who don't know.

My babies have flown away to Australia today and I am trying to weather the storm - already had a blinding headache and jaw pain but an attack of relatively short duration or I'd be communicating from the end of a drip I guess.

Marlenec profile image
Marlenecβ€’ in reply toSheffieldJane

Back to skyping I guess.

Take care.

🌻🌹

Marie1479 profile image
Marie1479

Great post. It inspired me to post today. The wine is open here as well on a beautiful fall day here in NY.

markbenjamin57 profile image
markbenjamin57β€’ in reply toMarie1479

Ah, thanks Marie, good to hear! :-)

Janll profile image
Janll

All good Mark, especially the part about the wine, cheers! 🍷

markbenjamin57 profile image
markbenjamin57β€’ in reply toJanll

Thanks Jan, cheers to you too ;-)

Autumn in WSM at last..?!

Polylinc profile image
Polylinc

πŸ˜΄πŸ’€πŸ’€πŸ’€

PiersC profile image
PiersC

Glad you are 'back' - I was just in the UK and thought I would have to scales the battlements of castle MB and issue a harsh word or two. Glad I did not have too - battlements would not be my thing right now!!!

(And I did look at the events on and landed between two meetings - one in Bath and one other - so off to Norway I went - where this damned PMR may come from in the first place...)

markbenjamin57 profile image
markbenjamin57β€’ in reply toPiersC

Hi Piers, nice to hear from you after quite a while :-)

Yes, you wouldn't have wanted to cross the Moat (the Bristol Channel) just to get a dose of Man Flu at the end of it!

Hope you enjoyed your trip to Blighty - how are you doing?

Keep in touch

MB :-)

PiersC profile image
PiersCβ€’ in reply tomarkbenjamin57

A moat AND man-flu - if it was just the castle wall that would have been ok!!

I have been reading all posts but not commenting much, I must say I still get a lot from the site including reinforcement of lessons that I should have learnt about 50 times over (typical bloke I think).

The trip to the old Empire home-plate (bit of a mix of cultures there..) went well. The PMR behaved itself amazingly (I did add an extra 0.5mg per day to ensure I could operate) and I achieved all I needed to do both in the UK and Norway - good outcome.

Other than that - going well - I seem to be almost on the cusp of a MB moment. I do not want to say too much, and typing with all fingers crossed is not easy - but I seem to be in a settled period. Long may that last. I suspect PMR will have a wicked turn ready for me when least expected....

It is nice to have that relief at the moment. I must admit it is the length of time and constant 'pain-in-the-arse' factor that gets you down a bit. I know I have had this for a relatively short time and how the 'ol timers of this forum have managed is amazing - their resilience and inner strength is something to be envied - I sure don't seem to have that - I just want it over!! (don't we all!!)

So, all good this end of the blue dot - warming up as you guys cool down. It was nice to get back and have a warm pint as well.

All the best, take it easy and always stay positive!!

Piers

markbenjamin57 profile image
markbenjamin57β€’ in reply toPiersC

Ah ha!

Glad you kept-up enough energy for the trip Piers. As I know, international travel can be tiring at the best of times..

As for an MB moment (i.e. sudden relief from nearly all symptoms?), all I can say is if I could bottle and sell it I'd probably make a fortune! ;-). Seriously, when you do get some let-up like that, you realise how debilitating (and potentially depressing) PMR really is. I agree, it's a test of mental resilience as much as anything else. I use the analogy of Snakes and Ladders to describe the PMR process - quite a few here say they can relate.

Glad all's well Down Under. Yes, Autumn's under way here, and of course all the Christmas nonsense looming. Ah, Humbug! ;-/ (only joking..).

Yep, keep looking in and it's nice to get the occasional post from you - even if only to 'shoot the breeze' (as one of the other lads here describes it).

MB :-)

Jackoh profile image
Jackoh

Yes I think you've nailed it on the head Mark - very snakes and ladderish and the need to " roll" I feel that this forum gives so much encouragement and understanding to help us to all "roll" in an easier fashion. Hope your man flu is not developing any further. Thanks for taking the trouble to repost.

markbenjamin57 profile image
markbenjamin57β€’ in reply toJackoh

Thanks Jackie. No worry, I thought it might also give patsit (formerly PeTee70) a bit of 'exposure' too (as if he needs it!) ;-)

Yep, the MF is subsiding after a couple of miserable weeks (on top of PMR). To be honest, it's been a real drag after earlier in the Summer. Oh well..!

I agree with you about the forum. After a very frustrating and unhelpful appt with my new GP last week, I've pulled out the big guns and written a serious MB-style letter to the Practice Manager asking for the tests (regular FBC bloods, ACTH / Synacthen etc) that she declined (!) and I feel I deserve - AND querying her emphatic and un-compromising approach to steroid tapering: i.e. (q): 'ALL my patients are off of the Preds within 2 years - reduce to 3 mgpd and by 1 mg every 4 weeks until you're off them'. Ohh, really, and at those critically sensitive lower levels of Preds?! We'll see what the PM has to say...

On the other hand, my GP did concede on the Dexa scan front by arranging one, but only after beating-me-up about falling over / possible hip fractures etc when I'm older (the usual script). I'm sure that's only because I Upped the Ante and told her that, as a relatively young, fit man with no previous family history, and having read ALL of the technical stuff about AA (good, bad and ugly), that I had made a conscious decision NOT to take it in my context. She didn't like it - but at least I got a result on that one. If the Dexa results are unduly 'positive' risk-wise, I'll eat Humble Pie with her. We'll see ;-)

Hope you're getting on ok in the meantime?

MB :-)

Jackoh profile image
Jackohβ€’ in reply tomarkbenjamin57

It's a real battle isn't it with your new GP. Good for you that you followed through with PM. I've had similar battles with my GP then she takes my blood pressure and wonders why it's up!!

Hope your dexascan turns out ok. Don't want you eating anymore humble pie!

I'm ok thank you - still trying to reduce down to 18mg after being stuck for about 12 months on 20 mg. Trying hard to " roll !!"πŸ˜€

markbenjamin57 profile image
markbenjamin57β€’ in reply toJackoh

Thanks J, I know what you mean about (some) GPs!

Glad to hear you're creeping forwards at 20/18. Yes, it's a trial of a Journey but many of us DO get there in the end!

Yep, (Rock &?) Roll.. but maybe more 'Roll' sometimes?! :-D

Sandradsn profile image
Sandradsn

Enjoy your wine Mark! After a manic monday I've hit the chocolate....big time! It's a girl thing!

markbenjamin57 profile image
markbenjamin57β€’ in reply toSandradsn

Ha, thanks Sandra! :-)

As for chocolate - I'm one of very few males in my extended, nearly all-female family so I know all about these things! :-D

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