PMR and GCA - IS THIS A 'MAZE' !! ??

[Rimmy]

Hello Everyone

Just reflecting on the 'maze' quality of this (or these) illness(es) - we go down one avenue and must turn around and try the next until we eventually find our 'way out'. I avoided 'mazes' as a kid - I didn't like the look of them (although in the 'Antipodes' I had only ever seen them in European films) - there was something 'deceptive' and claustrophobic about them and I couldn't see the 'point' of tunnels that ended up absolutely 'nowhere'.

I've never been one for 'games' - almost any type of game whether more or less 'physical' or 'cerebral'. Card and board games I really disliked and had trouble fathoming why anyone would ever 'play' them - crosswords, jig-saw puzzles, 'pin the tail on the donkey', early and later/contemporary video games - I liked none of them (and don't start me on the video 'content'). Also not a very 'physical' kid I was never inclined to either team or individual sports or games (despite my Kiwi origins) - and I didn't care at all who 'won' or 'lost' - it all seemed rather dull and colourless to me. I preferred reading, art and music.

But back to 'mazes' - or having to negotiate them - they surely could be considered a kind of 'game' - after all some people (the 'winners') will do this quickly - 'in and out' at first go - smiling, laughing - "so easy" !! they'll say ... then the majority will take a wee while - up and down some tunnels to 'nowhere' - but still emerge kind of relieved if quite exhausted - then some of us will get 'stuck' in there - up and down the tunnels around somewhat 'familiar' corners and re-encounter a central fountain that reminds us of the heady freedom of possible 'escape'. This last lot will of course be somewhat 'older' when they finally re-emerge- with or possibly without- the energy or even the life time left to reinvent themselves.

If this IS a 'game' (no surprise) I also don't like it very much - OK while I'm not into 'winning' or 'losing' - I will admit nothing in life is ever that black and white and we can learn from all life experiences - but the actual 'activity' of this PMR/GCA 'maze' has been quite UN-appealing: - including up that higher dosage tunnel (a dead end)- retreating to another which may or may not be 'right' (this time).

So Yes I really DON'T like games - or 'mazes' and as I recall - not even those vintage 'merry-go-rounds' where the horses 'fly out' and can swing into the 'infinity' of outer space in the mere blink of an eye ....

Best wishes

Rimmy

[SheffieldJane]

Very thought provoking Rimmy. I am awake in the wee small hours. In this maze, on this forum, we are, in a sense all holding hands and opining which way to go next and not feeling alone if we take a wrong turn or meet a dead end. We also leave a trail for others to follow. We are also able to laugh, support and comfort each other along the way. Working together, not in competition. When we emerge, one by one, which we surely will, it will be a-maze-ing. In the meantime it is not lonely to be a bit lost along with friends. 💙💚💛🧡💜❤️

[Rimmy in reply to SheffieldJane]

A very positive response SJ - probably what I needed as I am a bit 'over' these 'a-maze-ing' 'games' !!

X

[scats in reply to Rimmy]

The analagy falls down when you consider that we don't all need to take the same route to get through this. Jane is right in that we can leave a trail for others to follow , and we can walk together for a while, but our paths will probably part at some point. We don't all have the same entrance and exit.

I identify strongly with the feeling that I am getting older as all this is going on and my muscles are much weaker than they were. I too worry that I will not be able to return to a more "normal" life when this is over.

Looks like we're on the same path at the moment, we can walk together for a while. xx

[Rimmy in reply to scats]

Yes certainly for all of us an 'individual' experience - and this is just of course just my 'metaphorical' and biased perspective - like when you have a broken leg and 'everyone else' appears to 'not appreciate' that they actually have two functional limbs !!

[Longtimer in reply to scats]

I sometimes wonder (I know I shouldn`t) who the real me is anymore after 7 years of this restricted life with PMR....can`t help it some days.

[scats in reply to Longtimer]

I spent the previous 10 years caring for my parents. I can remember fuming with anger because my standards were compromised by doing something I disagreed with for my Mother. Now I am so relaxed about these things, I don't have the energy to get angry. I'm not sure what the real me would be like anymore.

[Longtimer in reply to scats]

Many things that would have bothered me years ago...don`t now. Also I used to rush around (whatever is rush I ask myself!) but purposely do them slowly....What I mostly say to myself is....do I care...no.....

[Longtimer]

I think I started on the carousel, and have been on a roller coaster ever since, it pulls up for a rest and then gets going again....

Seriously though, I have given up trying to figure it out what, why and when with PMR, it is in control....I agree, certainly not a game...….

[Grants148]

Well l did ride on this horse ,as in my profile picture,but am very much like you Rimmy as to not being that interested in games ,apart from a table top game shared with family which at least can keep them away from TV or mobile phones etc.l would so much like to come off the pred,but lowering just by half a mg will bring on a flare and then lead to even more pred.l think l am stuck in the maze at the moment ! I am so grateful to all of you on this forum ,l would have been really lost in the maze without you.l wish you all a good weekend xx

[Rimmy in reply to Grants148]

Yes Grants I get the half a mg 'dilemma' - think the last try enhanced if not exactly 'precipitated' a flare ...

[Longtimer in reply to Grants148]

I am the same...react to just 0.5mg....I tell myself I`m such a delicate little flower (NOT) but seriously sometimes wonder how some people can drop 1mg and just keep going.....all baffling to me...even after all these years.

[Rimmy in reply to Longtimer]

I have wondered a lot about body weight and dose and needing more than average - being tall and well built (aka a bit overweight) but regardless 0.5mg is pretty significant in my lexicon at least at present !!

[Longtimer in reply to Rimmy]

I`m 5ft 3in....weigh just under 10st....and yes I have thought about us all being different as regards weight etc,...makes sense really..

[Hidden in reply to Longtimer]

I think the 0.5mg can make a difference but often it depends on the dose you are actually on as it may be more about your Adrenals than the PMR from about 7.5mg which is the dose l’m aiming for again.

My Lovely Consultant (who died last year in the Climbing Accident) advocated alternate days ie 7.5mg/7mg & l have at times tried it & it’s something l would consider again when l much lower than l am now.

[Longtimer in reply to Hidden]

Thanks for that, I am roughly where you are now, will halt for a while, have come down with a stonking cold...good luck with it....

[Hidden in reply to Longtimer]

Get Well Soon 💐

[Longtimer in reply to Hidden]

Thank you, thought I was going to get away with it this year. I have been married over 40 years...and my husband has never had a cold!....I keep saying I am going to leave his body to research....except I think, or pretty sure I will be gone before him!

Of course I blame him....bringing me all the bugs home....especially when he`s been to the pub!!……..

[Grants148]

I hope you feel better soon Longtimer ,my husband caught bugs at the Gym,l coped with the colds but was not too impressed with Novorvirus,not sure whether l have spelt that correctly x💐

[Longtimer in reply to Grants148]

Yes, so unfair!...they go to the Gym and the pub, and we suffer for it, something wrong there.!....norovirus is in my local hospital.....restricted visiting....horrible...hope you are over it now.....

[Grants148]

That was some time ago Rimmy,l would definitely rather have a cold than that ghastly virus ,it is so infectious.