I suddenly felt I'd aged - a paper describing the effects of PMR

It is truly the right article to give to good friends and family who really want to know what this strange PMR disease is.  So many don't know, and cannot make sense of it, because we do not tend to look really sick, but often we do suffer discomfort and pain!

I hear and feel for you.  It is heart breaking when this hits at a young 53! I am 76 and do know how PMR is effecting me. It is a challenge every day, and your words describe the feelings and symptoms.

I can't recall life's instructions mentioning any of this stuff. I can't even recall why someone said it wasn't meant to be easy. But just a tad easier some days would be nice. And it seems every time something ails me the cure is just around the corner. Just in time to be too late. And when we find someone worse off than us we are supposed to feel good, so I tried that and failed, which just made me feel worse. I can feel the frustration from here, which does absolutely nothing for your well being. Oh that I had a magic wand that worked. Even "we're tough, we're Aussies" wears a bit thin after a while. I don't want to be tough, just let me be human, and fragile, just for a moment, and pause for a rest in the middle of the battle. Pace yourself they say, but we have to be able to start in order to pace. Ginger tea, turmeric, and cycling that we so calmly and clinically post about just don't seem to register some days. Crying (us males aren't allowed to so we have to scream and shout) seems so much more appropriate.

Having spent some pleasant times in Yorkshire I read the article waiting for someone to say "eh, in't it grand".

But of course they never did. And were unlikely to. "it ain't grand". I hope the t'worms that'll come and eat me up get indigestion.

My couple of miserable weeks is just a pinprick, but look what it does to me.   

Well written, Juliian.

you even made me laugh, at times, even though it's not so funny.

My parents didn't prepare me for these"Golden Years"

Do they use that expression in Australia?

It's so odd to put this in writing, but I don't recall ever feeling weak, fatiqued, or in the kind of pain we speak of in this forum. 

i was there for everyone, and had an endless abundance of energy, at the end of the day. I was the, energy bunny (commercial for batteries)

Even lymphoma didn't keep me from playing sports for hours, working, cooking, cleaning..........,taking care of business, as they say. I was in control.

sure, I abused my body......didn't eat as well as I should, or drink enough water, but what did it matter, I could handle anything.

PMR changed everything for me.

i think the problem is that 'it' controls me, and not the other way around.

i finally work my way down to a small dose of Prednisone, and I feel I'm in control, finally....strong enough to play hard game of pickle ball,or tennis, and then workout for a little while.

a day later, I'm flat on my back, with a flare, and starting again. I never learn.

At times, I get depressed, I cry.......I curse myself for being so stupid, and then I get back on the train for some more rockin n rollin.

i've never dealt with anything like this.

Do you think it!s because life has been so good, and it all finally had to catch up?( no answer required)

Barb

👍👍👍

Nicely done, Julian

And yes, to Barb.

I couldn't agree with the both of you, more!

Dan

There is a brighter side  - it just takes a while to find it.   PMR is life changing not life threatening. You are now marching to the tune of a different drummer.  You only get one shot at this life, it is not a rehearsal so go for it. 

You can cry, it is a human emotion and that means you, yes a male Aussie.  Crying is good for you.

You can become selfish - "me first, last and if anything is left over me again"   - yes a Yorkshire saying  -  bet you have never tried that before.

You can treat yourself like a Precious Prince  - which you are, you are precious to family and friends.

You meet people you would never have met especially if you try to set

up a support group and see if there are other PMR & GCA people near where you live and meet up and have a wonderful moan, groan and a heaps of laughs.

Visit the PMR GCA North East website and see what happened when 5 people (only two of them under 60)  met on this forum, result a National Charity, two independent ones and support groups,  previously there were only two, one in Scotland and one in East Anglia. More forums, more research, more patient involvement etc. Look at the UK map and just think it could be you are the catalyst and have an Aussie map.

So get cracking  - you can do it - and get that Aussie Map going.

What helps is learning to pace yourself, read The Spoon Theory.

To date, I have never met anyone who was not a get up and goer, a person who others turned to in times of trouble, reliable, helpful and thoughtful who has PMR and/or GCA.  It looks like you joined a special club which nobody would ever join voluntarily.  

And you signed off with a smile....................

 

This is so true.  What I've been learning, much to my disgust, actually, is that I've welcomed this opportunity to let things slide.  Mind you, I don't enjoy living in a tip, but this weekend my husband started doing some serious decluttering.  I think it finally dawned on him that by the time I've taken care of my physical needs (and "appropriate" exercise does take a lot of time) and the basic necessities of food shopping, meal prep, laundry and much too rare vacuuming, I haven't any energy or willpower left to deal with mounting piles of papers, junk mail, etc.   

De-cluttering charity shops will love yor husband. 

I haven't any energy or willpower left to deal with mounting piles of papers, junk mail, etc.   

Re-cycling  - junk mail comes in front door and out of back door, never opened. Papers, if not read in two or three days  - too late and out they go.  Only thing that gets dealt with, on time, are bills grrrr.

I love living in a tip  - wish I had thought about it years ago.

Unless you can write your name in the dust - don't bother and then never dust with a duster, it just moves it around  -  vacuum (Hubby?) once a week - dust vanishes.  

 

I wait until I can see dust bunnies in the corners...

What needs to be clean is clean - but there is an awful lot of anxt about a bit of dust...

You don't know my husband.  The man who flips over an envelope and writes a phone number on the back.  And often an illegible note.  This has now ceased to be junk mail, or at least an envelope to chuck in the recycling, but has become what might be a really important message - how do I know?  He is also the guy who's allergic to dust, does that make a difference to how often he moves the dust around?  One guess.  

Oh the shame of a messy house.....  

Well, two cats don't help with the dust bunny situation.  It's really the stuff which gets to me, and I'm just not disciplined enough when I deal with it.  Besides, if I have free time I'd rather do something more fun, like chat with you folk, or read or draw a picture or.... well, nearly anything else, actually! 

So would I - so housework is rarely done. However, no pets and a very small house (3 rooms, all dual-purpose, plus cellar and garage) reduces the problem greatly! 

We down-sized from a 9 room house plus double garage in Scotland to a large 2 up, 2 down plus kitchen (sort of) in England. That equals major de-cluttering. It expanded as we built on (and a daughter can back) and then we went back to 2 up 2 down before rapidly moving here which was already furnished. There is nowhere to keep things - they had to be chucked out. When you don't have many possessions it does make life with PMR simpler...

I think I'm one of the lucky ones in this journey. I was born lazy and have all sorts of tricks to make life easier. Running out of energy before the end of the day and a perpetual feeling of having to push myself to do things meant I came reasonably prepared for polly. Just a different way of doing lots.

More concerned for Flip who didn't seem her usual self. Brain not working properly touched a nerve in me.

Dust was always an enigma to me. The engineer in me has never understood why we design things to get dusty and dirty while at the same time so difficult to clean. Instead we are beseiged by ads with cleaning products. Its like recycling doesn't make sense - don't produce it in the first place. But I digress ..... there is no logic to pmr.

Thank you Julian.

I feel better today. Back to my loud obnoxious and funny self again.

sounds good,

I thought you'd been a bit quiet .....

Julian: That isn't digression - why weren't you more involved in design to avoid the problem!!!!  

You're so right - in the camper van the bit that really infuriates me is around the cab seats, the rest isn't too bad. Just a bit more SMOOTH cladding would have made such a difference.

I may have been born lazy - I certainly have a lot of ways to make life easier! PMR meant I needed a few more and I did find some!

I don't think I could have improved on the design of pmr (or made it worse). 

Perversely I was cleaning motorhome (big 4wd camper) when pmr arrived to help. Aus agriculture people are a bit picky. After 3 years and 34 countries it needed a bit more than a wash. Fortunately helpful locals.

Good to dine out on now but the near fire on Nepalese roadside was a bit of a challenge. I can clearly recall the brief moment of panic when I realised how hard it would be to disconnect the battery when arms and hands weren't working too well. The several hours playing contortionist under the dashboard to get the starter motor working was more than a bit interesting when something simple like putting on a T-shirt was an epic.

I'm basically lucky though. It all works out in the end. Just takes a bit of time sometimes. 

was it Oscar Wilde who said that ' after 3 months the dust doesn't get any worse' ?  !

Don't know - but I don't think it takes that long!

Do now - Quentin Crisp, The Naked Civil Servant, Ch 15

ah!  thank you