An alternative take on GCA/PMR

Been another wet afternoon, so been thinking how to explain GCA/PMR slightly differently, so here goes. Hope it helps.

Living with GCA and PMR is a bit like living with a recalcitrant teenager. You're coasting along through life quite comfortably, with maybe the odd unusual occurrence when suddenly out of the blue this 'monstrosity" hoves into view.

Everything you took for granted prior it's appearance is suddenly turned upside down - it grumbles first thing in morning making getting out of bed an impossibility without the accompanying grunts and groans leaving you feeling like a bear with a sore head...and shoulders, hips and anything else you like to mention.

The mess it leaves in its wake makes you tired just thinking about it, apparently making beds, tidying rooms and washing-up are a definite no-no nowadays.

It invites a mate or two (Pred & maybe others) around for a sleepover - you must be joking. Sleep's the last thing on their mind - if we're awake why isn't everybody in the house wide-eyed and bushy-tailed!

And all those endless journeys with it to see professionals who tell you - "he must do better" and "he'll never get anywhere in life if he doesn't listen in class and follow the curriculum".

So you sit down with it, and have a frank head to head, stating all the obvious things, like..if you want a good job, earn lots of money and be happy in life you need to knuckle down and follow the rules. Okay Mum (or Dad) it says, and that's fine for a time, sometimes a few weeks, or months or even a year and then it gets a bit too ambitious and raises its game (probably to impress someone) and it all goes to rats - again. So back to the "must try harder" syndrome accompanied by the mutterings under breath of 'I'm bored with this now, wish I could leave school", "nobody understands what I'm going through", "why can't I go out and enjoy myself with my mates", "does my bum look big in this", blah, blah, blah.

Actually as it gets toward the higher teens, and the hormones stop raging quite so erratically, it somehow becomes much more manageable, and amenable almost pacified, but don't be lulled into a false sense of security it then find new friends, Ade & Des (nod to MB - don't want to be accused of plagiarism) who again leave you shattered and not knowing whether you're coming or going. Or as the kidz say - on your a*** or your elbow.

Eventually when all that teenage angst is over, it decides it's now fully grown up, and thinks it might like to strike out on its own and actually move out!

Life returns to normal .....ahh bliss! One day, one day!

See, looked at like that, it's not all bad!

39 Replies

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  • One day, one day seems a long way off. Good analogy. Glad you keep me plodding on with a pretty good attitude.

  • I really enjoyed that, Dl, although I had to re read it twice inorder to understand your fancy use of English.😂

    I think it's so nice of you to spend your time thinking of ways to help PMR/GCA sufferers, even though you are in remission. Thank you.

  • Thank you,

    Hope you understood most of it, I doubt if Spanish teenagers are much different from English in their ways at times.

    Buenos dias.

  • Sorry --wrong box --eyes blurred!!! mean't to tick.

  • Excellent!! Dreaming of the 'one day, one day'!! :-)

  • Love this, made me smile.

  • Dorsetlady that is a brilliant analogy and very comforting. I think I am at Mark's Ade and Des stage at the moment with this condition still being a mystery at times. The thought that PMR will grow up and leave home is a thought I am hanging on to. Your rainy day has not been in vain!

  • 😀

  • Dear Dorset Lady, eloquent as usual, great! I have taken to thinking of PMR as a "shadow me", sort of attached and trying to go from foothold in my life to total dominance. This makes me take corrective (Pred) and positive (mop dancing and singing) actions. Right now, this sunny Sunday morning I have the Stones on Blue & Lonesome loud in my earphones as my wife, wee lass and house guests sleep on. I have danced the mop over the kitchen floor, to the amusement of the dogs and popped my Pred, BP tabs, "alternative" tabs until I rattle . . . and look forward to taking my unruly other self off to Crete on Thursday for 10 days (new M&S baggies to go!).

    I am due to reduce from 7.5mg Pred to 6mg a couple of days into the holiday. That's a hmmm I must confess as wrists and parts of hands feel as if PMR is gaining somewhat. So, I will put things to the test, gather the loads of garden waste and haul this off to the local dump, take my daughter to Pony Club and then down some serious red wine with the eve. What I mean really is that I understand that remissions / worse may come, though whatever windows of relative ease present, I am diving through them.

    We should arrange a PMR Ball down in Dorset eh? Good luck all (and Pink Floyd works even better!)

  • Hi,

    Enjoy Crete - M&S baggies to the fore! But maybe postpone the reduction until return - your teenager doesn't want 'a must do better' on its report - even on holiday!

  • Hi,

    Forgot to say I'm more of an Elvis Presley gal myself, uh huh!

    But then I am positively ancient!

  • Lovely analogy - like others can't wait until he's grown up and left home!! Thanks for all your time you spend on here even though your teenager has become adult and has left home!!

  • Ah yes, but even when they've left home, there still a place in your heart for them!

  • Great analogy! Got ticked off by my lovely, caring Rheumatologist, last week, for trying to reduce my pred too quickly, did 2 mg in a month instead of her planned 1mg from 16 to 14. Definitely felt like a naughty teenager - also can't wait for my teenager to leave home, but I know she will be hanging around for some time yet!

    Sho-Sho

  • Yes,

    They have a habit of that!

  • DorsetLady you are very funny. I did enjoy that. Marilyn

  • Thx - just the musings of a mother, grandmother & GCA survivor!

  • It's like pregnancy. (Even the weight gain.) That's the easy part. Then it goes. (Though that's when the real fun starts)!

    Ha ha . . . no worries about understanding. We are predominantly British stock in New Zealand, though visiting Britain, I couldn't understand a word when spoken to in dialects! I was born in Sri Lanka, my father's family came from Wiltshire, mother's ancestors from Derbyshire, my mum lived in Sheffield, my brother is in Birmingham - and my partner was born in Fife. I got away with glorious ignorance by being 'official' photographer - and avoid a translation each time someone spoke! Ha ha.

    Keep well and smiling, DorsetLady

  • Hi sondya,

    As the name implies I now live in Dorset, but was born in Hampshire as was husband, although his ancestors came from Wiltshire. Have lived in other places, so the actual move is further than it looks.

    In regard of dialects, because my husband was in Army and we moved about for 20 years I thought my southern drawl was not too pronounced.

    However when I first went on holiday with my son, his family and in-laws I was a bit shocked when his F-I-L (who comes from Manchester, and I think HE has a strong accent!) said to him "I can't always understand what your Mum says" .

    Being a chip off the old block my son replied "No my dad didn't either and he was married to her for 46 years!"

    My hubby's favourite quip was when asked about our long and successful marriage -"we have a trust and understanding - She doesn't trust me, and I don't understand her!"

    My daughter lives in NZ - whereabouts are you?

  • Ha ha. Brilliant! I married a Cornishman, with BBC accent!! When I migrated (with him), had to curb my hot-curry accent so people could understand. But, if I am in a room of other Sri Lankans, oh boy, we let rip!

    I live in west Auckland. Hope your daughter lives here too. Would be lovely to say hello.

  • Hi again,

    No, she lives on the South Island- near Methven, on the edge of the mountains- glorious views. I also have two cousins living in NZ one near Ranfurly, SI, and the other at Wanganui, NI. Grandson also at uni in Wellington.

    Believe we have a couple of contributors on here who live in/around Auckland so perhaps you could meet with them sometime.

    Am coming to NZ for the summer (yours) and we're coming to see cousin in Wanganui and going to Lake Taupo, but as short on time for that particular trip don't think we can fit Auckland in as well!

    Take care.

  • Ah. Mainlanders. My introduction to New Zealand was Dunedin in the SI. Lived there for a couple of years (husband was in advertising and set up a branch office there) before moving to Auckland. Agree about the stunning scenery. We saw the whole of the south island on many trips, sometimes camping beside streams in our little pup tent and driving in our Austin 16!!

    Have a little album in Flickr - here's the link. There's even a pic of me panning for gold in one of the west coast rivers.

    Keep smiling

    flickr.com/photos/sondyaust...

  • Hi, been to Dunedin on last trip. They have a batch at Hampden- not far from Moeraki - glorious unspoilt beaches abound. Looking forward to visiting there again.

  • Lucky you. Dunedin was so lucky this winter. It flooded in parts.

  • I had my crp results and are down to 3 I am taking 17 mg pred my crp came down from 11 to 3 in a week will I still stay on that dose would appreciate your comments as my rhey is away on holiday

  • I suggest you post this as a new thread so more people will see it. Also tell us if your rheumy has given you any reduction instructions? How are your symptoms?

  • This came as a reply to me! Guess you meant it to Rose1bud?

  • I did - and clicked on the reply to her! Daft forum!!!!

  • Bad back pain and a foggy head

  • Rose1bud: Please post a new thread with lots more detail. We can't tell you what to do about dose but we can help you decide for yourself - but only if we know what the problem is.

  • My crp is down to 3 do I continue with 17 mg pre as my reumy is away on holiday I live in Ireland in co Kerry

  • Hi,

    This has come to me not PMRpro, think something must be corrupt with this post/link.

    So as PMRpro suggest start a new post completely with your questions, and hopefully you will get the right answer from the right person!

    As if like wasn't difficult enough without technology getting angsty!

  • See PMRpros comments below.

  • Just as PMRpro's comment is now above...

  • Mmmm!!

  • What a very literary way of putting.

    You sound a very philosophical person

    Keep battling

    And all the best.

  • Hi ronzy,

    Fortunately my battle with GCA is over. Fingers crossed.

    But there's always something - for me it's osteoarthritis- but that's easy peasy compared to what went before.

  • That's good. My advice to you and anyone is do as much as you can when you can.

    I say to people you won't get fit driving everywhere. Even the morning paper. 😱

    My sister didn't walk enware.

    Then she couldn't.

    Hugs

  • Suppose it is a question of attitude. We have a car which these days is rarely used except for proper journeys and heavier shopping - daily shopping is done in the village and only when heavy items are involved or something unavailable in the village do we get the car out. And yesterday we went to apply for the over-65 Mobicard: 150 euros for travel anywhere in the region on bus, train or some cable cars. OH is about to have radiotherapy - and we are taking our camper down to near the town the r/t unit is in. We will get our money's worth just from the local places we haven't yet visited - all on that card. We'll take the car too - but will probably hardly use it. Couldn't manage without it though.

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