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!
Keep smiling All - On, and Forwards?!
MB