The Lighter Side: Never Been so 'LOW' - Maybe the... - PMRGCAuk

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The Lighter Side: Never Been so 'LOW' - Maybe the Snakes are Winning..? ;-)

markbenjamin57 profile image
28 Replies

Greetings (again) Polymalingerers and Pred Playmates worldwide :-)

To quote an old saying, 'Resistance is Futile': and despite your wildest hopes, I'm back to plague You Lot with more irrelevant silliness. Or am I..? ;-)

I was in touch with a fellow Polymalingerer today who kindly ordered my new book ('Write Me Funny'...etc). Yes, a Blatant 'plug' for THAT silly book. But unashamedly so, because PMRGCAuk will receive a slice of the proceeds - which they greatly deserve. Be quick if you want to order a signed copy in time for Christmas. Although I'm great at Time Management, I only have 27 hours in every day (ha ha - the old gags are the best) :-D

But that's not the main point of this latest Rambling...

My dialogue today with a fellow, long-suffering and frustrated Polymalingerer who's 'stuck' at 12mgpd reminded me of my recent progress on the Steroid Tapering Journey which, for many of Us Lot, can seem like a roll of the dice in a game of Snakes and Ladders despite the best of Pred tapering 'plans'.

When I say 'Never been so Low' I don't mean Depressed, necessarily - more about getting down to 2mgpd Preds after a long Journey form 30mgpd 2-ish years ago when first diagnosed with PMR. Although still not 'out of the woods', I reflected today on my own 2 year PMR / Pred Journey with all its twists, turns, uncertainties, frustrations and myriad of confusing symptoms including the dreaded DF (Deathly Fatigue) which many of us well-know is a by-product of various types of chronic Auto Immune illnesses. Yes, the DF really is as much of a 'curse' as the myriad of other PMR GCA symptoms.

I also reflected on those several tortuous months when trying to reduce the Preds from 10-ish mgpd to 6 (DSNS style) when my hopes to join Club Zero, return to Business as Usual and 'recover' from PMR seemed as likely as winning the National Lottery or beating Lewis Hamilton in the Monaco Formula 1 Grand Prix.

In Learning Psychology circles, 'Reflection' (i.e. looking over one's shoulder at, and making sense of the past in relation to where we are 'now') is said to be a great tool in getting a hopefully more positive perspective on the Present and Future. From my Day Job, I know this stuff theoretically: but I applied it to myself on my PMR Journey. A case of 'Physician, Heal Thyself'? ;-/

Conclusion?

Yes, I've finally got 'down' to 2mgpd after a long haul in the PMR / steroid tapering process and am suddenly feeling a massive sense of achievement as well as relief - Yay! :-D. I appreciate that getting down from (e.g.) 2mgpd to Zero can still be a slow process, as many here say: but my Message to all of You Lot here is that it IS possible with a little patience, careful 'pacing' (still!), and above all, Support and Encouragement from those of Us Lot on a parallel Health Journey. And, having a little Faith in one's own ability to Survive on - and possibly Thrive (?) during a Life Changing health Journey can help too.

Either way, to quote an increasingly-used (if 'Cheesy') term in Business and Organisational life: 'We Have Forward Motion!'. I'm up for some of that and hope you are too. In the PMR GCA game of Snakes and Ladders, sometimes the 'Snakes' can be our friends - despite their initially sinister appearance on the Playing Board of Life. Ironic, or what?

So, try to keep positive on the PMR GCA Journey. And.. don't forget to try to keep smiling through the Tough Bits - it can help in small, but important ways in the coping process..

Best Christmas wishes from a fellow Polymalingerer, and hopes for a positive and healthier 2018 to all of Us Lot.

That's it - I'm off to play with my Lego and my colouring-in book now. Playtime, at last!

MB :-)

aka 'Uncle Mark' / 'Swivel Hips' / 'Old Four Eyes' etc ;-)

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markbenjamin57 profile image
markbenjamin57
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28 Replies
MaryA_ profile image
MaryA_

Thank you Mr Mark for all of that, it’s needed from time to time. 🌻

Yes, it really is a good idea to look back and see how far we have come. I've had PMR for just 10 months and at my current rate of taper expect it to go on for some time. My progress has been in accepting that this is the way it is and what will be will be. When first diagnosed I told myself that I would either fight it or ignore it and carry on as usual (like I usually do if I get, say, a cold!). It wasn't to be, of course, and I realise how naïve I was. So progress of sorts has been made in my acceptance of it. Yes, it can be good to look back and reflect.

Thanks Uncle Mark!

🎄🎄🎄🎄🎄🎄

SheffieldJane profile image
SheffieldJane

Amazing post Mark! Happy Christmas to you and a happy healthy 2018. You used your time to become a comic author! If that is not turning lemons to lemonade I don’ t know what is. Cheers Mark may blessing shower on your dear head.

markbenjamin57 profile image
markbenjamin57 in reply toSheffieldJane

Many thanks Jane! Well, yes, lemons and all that.. :-). It's so nice to get a good response to THAT book, many of You Lot have said that a giggle or two helps in getting through the tough bits of these illnesses.

Next..?! :-/

MB :-)

PMRpro profile image
PMRproAmbassador

Misery guts here feels bound to mention one tiny fact in relation to MB: he claims he is a MAN (I have no evidence one way or t'other, just saying). And PMR for men is almost always a slightly different journey in very many ways. Not least - duration.

This is just to say that when you don't manage easily or quickly - it is the PMR, not you!

markbenjamin57 profile image
markbenjamin57 in reply toPMRpro

Ha PMRpro - trust you! ;-). But don't any of You Lot of Women here forget that MAN PMR, like Man Flu, is unique and especially difficult to bear for us mere Males despite its relatively short duration (sob, sob, whimper etc).

That said, I feel I need a brief interlude back behind the sofa with teddy, in anticipation of the responses from the 'stronger' sex... :-D

Soraya_PMR profile image
Soraya_PMR in reply tomarkbenjamin57

Mark, something for you and Teddy to read during your sojourn behind the sofa.

You’ll particularly enjoy the last paragraph

bmj.com/content/359/bmj.j5560

Exits stage right muttering <the BMJ has gone potty...man flu indeed!>

SheffieldJane profile image
SheffieldJane in reply tomarkbenjamin57

You took that like a man Mark,

Sandy1947 profile image
Sandy1947

Thanks for the uplifting post. I’ve been doing a good bit of traveling lately...Dallas, Boston, NY. Trying to get from 16mg to 15 with a bit of a struggle and increased pains. Dr. wants me to do it in 20 days. Not sure why we are playing “Beat the clock”. Cold weather doesn’t help. However, humor does! Thanks for the laughs! Happy Holidays!

markbenjamin57 profile image
markbenjamin57 in reply toSandy1947

Thanks Sandy, don't be spooked by your doctor - you probably know best. I agree, the coooold weather doesn't help with health conditions like ours - but a giggle or two at least takes our minds off of it! ;-)

Charlie1boy profile image
Charlie1boy

Hi Mark,

You have done well to get down to two! Wish I could say the same thing.

Started before you by a month or two, and have failed twice to get to 4.5 mg on the dead slow method from 5. Currently, I'm languishing at 6 mg, where I shall remain till after Christmas. Very frustrating, but that's the name of the game.

I seem to remember that you very quickly got down from six to three?, or maybe I got that wrong.

Anyway, very pleased for you, and hope to see a post sometime (not too far away), when you join the zero club!

Best wishes for Christmas and the New Year.

Paddy

PMRpro profile image
PMRproAmbassador in reply toCharlie1boy

If you have twice failed to get to a dose - that is the PMR telling you that where you are is where you are meant to be. And the result of trying to force a reduction is very often having to go back to a higher dose - which was NOT the object of the exercise.

Charlie1boy profile image
Charlie1boy in reply toPMRpro

Yes PMRpro, I can but agree. The Matteson Report made me much more relaxed on this issue.

Thanks, as always, for your interest.

Paddy

markbenjamin57 profile image
markbenjamin57 in reply toCharlie1boy

Hi Paddy

Yes, I remember our comparing notes before. And yes, I did make a quick / miraculous breakthrough in reducing from 6 to 3 mgpd after struggling for several moths to get from 10 to 6. But as a few of Us Lot report, the numerous PMR symptoms (including the Deathly Fatigue) seem to settle down as the body / hormones etc get back into some kind of balance.

As for Club Zero...? Mmmm, as always, we'll see! Either way, I've no intention of abandoning You Silly Lot. How would I occupy my time otherwise..? ;-) :-D

BW to you too, be patient and keep smiling on the Journey

MB :-)

Zofitmogelijk profile image
Zofitmogelijk

Hi Mark, let’s shake hands since I am on 2 Mg too. If the aunties would allow I proposed a contest 🤭. But we want to give the adrenal glands time to pick up their task. I no longer feel so tired and sleeples all the time and do hope that it Goes for you too. And even start to think of a time after pmr. It learned me to slow down and listen to my body and mind better than before. Although I walked 25 km saturday, but that was not in the planning a bridge stood under water and had to make a long Detour.have a very Good and joyfull christmas, and Thanks for all your Posts, Aletta

markbenjamin57 profile image
markbenjamin57 in reply toZofitmogelijk

Well done, Aletta! :-) I agree, the PMR symptoms usually get better as time goes on and the body / Immune System heal themselves (fingers crossed).

Have a peaceful Christmas too - and wishing you a healthy and happy 2018.

'On, and forwards..' ;-)

MB

Rosbud profile image
Rosbud

Thanks Mark and Happy Christmas to you x

markbenjamin57 profile image
markbenjamin57 in reply toRosbud

Thanks Rosbud - you too! :-)

Janll profile image
Janll

I so remember, ‘in the beginning’, when walking so slow because I just couldn’t walk any faster (fatigue) seemed like a curse. Now I think, ‘what’s the rush? I don’t mind being in 1st gear. I’m still moving forward’. We learn to accept and be content we can still walk unaided. This forum has taught me so much........more than anything, I am NOT alone. Thank you all!

🎄🎄🎄

markbenjamin57 profile image
markbenjamin57 in reply toJanll

Yep Jan - 'Reflection' and all that..? Maybe, sometimes we should all think about what we still have, as opposed to what we have lost..?

Wow, that was a bit philosophical! ;-) :-D

Best wishes for Christmas (and enjoy your Hols!)

MB

Janll profile image
Janll in reply tomarkbenjamin57

Yes Mark, everyday we are above ground is a day to celebrate. Enjoy your Christmas! JL

markbenjamin57 profile image
markbenjamin57 in reply toJanll

You too, Jan! :-)

BonnyQuine profile image
BonnyQuine

Thanks for the encouragement, MB. Still a way to go for me, but might manage the occasional grin.

Best Christmas wishes to you too.

markbenjamin57 profile image
markbenjamin57 in reply toBonnyQuine

Thanks BonnyQuine - is that a Promise?!

BW to you too :-)

Jackoh profile image
Jackoh

Hi - surfacing after nasty infection to say Happy Christmas and peaceful New Year to you too Mark. You have been a valuable addition to this " family" And long may it continue even after you've got to zero!! Best wishes Jackie

markbenjamin57 profile image
markbenjamin57 in reply toJackoh

Thanks Jackie :-). I'm not going anywhere in a hurry though! ;-)

Estellemac profile image
Estellemac

Thanks Mark for some good insight to tapering off and practicing patience. I am riding the rollercoaster of PMR and Pred. I need to take more notice of the experienced tried and tested methods and not expect to be fixed and back out there as soon as I would like to be. I am going to OM in a cupboard now and meditate on finding internal peace by practicing patience and wishing love to everyone, especially those who put up with us when the going gets tough.

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