Posted , 22 users are following.
I posted this in another converstation but thought it might be fun to start a 'whinge' post. 
What do you 'hate'?
You know what I hate?
People who, even when they know I have PMR, suffer fatigue, on a cocktail of medications - all of which have caused a huge weight gain, tell me I need to go for a walk as it will make me feel better!!
AAGHGGHHHHHHH
3 likes, 120 replies
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ron25099 FlipDover_Aust
Posted
As I've said previously, we need some help with this problem of feeling so crappy but not appearing that way to others. I've pointed out that my own wife seems to forget after one and a half years of my PMR. If I groan she wonders "What's causing it?" Short of carrying a crutch all the time, how do we gently, without constant complaining, remind folk that we are under a constant fatigue, etc. Do we need a "PMR" badge, or what. I know I'll appreciate responses to this. If we find an answer, perhaps people will hesitate before asking us to do certain tasks when we are already exhausted.
constance.de ron25099
Posted
Perhaps a better badge would be "If you want it done, do it yourself".
Tinaj ron25099
Posted
Hey Ron, You're so right. One day my sister remarked "You didn't seem that bad"! I have no solution?
Tinaj ??
lodgerUK_NE ron25099
Posted
A question for you all, if a family member, friend, work colleague had told you they had PMR and'or GCA - would you have understood?
If your honest - you know your will probably be 'No'..
I went through all of that for one year, then we had an idea and......
the end result was:
There is help and I posted earlier in this thread about a DVD called 'You are Not Alone' made by medics (no jargon) and by patients.
It was specfically made to explain to new patients, family, friends, carers about 'Polywhotsit' and 'Giant Thingy'. Some PMR and GCA people have even taken it into work for their employers to watch.
£5 is not expensive and it is sold by pmrgcaauk northeast a registered charity. To date nearly a thousand have been purchased and there has not been any adverse criticism, ,A small Regional Lottery Award enabled it to be made.
There is also an easy to read booklet 'Living with PMR & GCA' aimed more to help people with PMR & GCA, but an easy read for family and friends. This was published 16 months ago and within 3 months a re-print was necessary.
There is limited medical jargon on the DVD and in the Booklet this makes them easy to understand.
Eileen, co-authored the book and the first to articles answer the question 'What is PMR and GCA' in words that anyone can understand. Not a long dreary medical explanation either.
Knowledge is Power and you need to pass that knowledge on.........
Before you say it, this is not a hard sell at all. You mkae your own minds up - as we all do.
maid_mariane lodgerUK_NE
Posted
i got the dvd and the pamphlet and i read these posts to my sps and family and friends and they still don't get it. all of these people are well educated some with doctorate degrees.
it's the info online saying you'll be fine it leaves in 2 years. i was diagnosed in September 2015 only now at 16mg. I'm looking at a long haul.
don't know the answer but i keep trying to educate them.
lodgerUK_NE maid_mariane
Posted
Somtimes people who are well educated and brainy and at the top of whatever profession they follow suffer from the 'queue syndrome'.
There is a queue (before you are born) and the server dishes out the things you need. So what you are like depends where you are in the queue.........
So brainy people were
first in that particular queue,
last in the queue for common sense.
and were second last in the queue for empathy as well.
Well that is what I was told, as I was so busy talking whilst waiting, that I ended up last in all the queues.
I sincerely hope that none of them ever get any auto-immune illness.
Explain to them about 'Bells' in relation to 'statistics' and interpreting them.
Eileen explained it to me and boy did it work and it still works, especially with brainy people.
maid_mariane lodgerUK_NE
Posted
i have always said they are so smart their dumb.
thanks for the support.
christine_fay FlipDover_Aust
Posted
I was an avid DIY enthusiast before I was floored by this horrible condition. I was converting my loft into a bed sit for my granddaughter when it hit me. Not being able to lift a drill or electric screwdriver any more it took nearly three years to finish the project...mainly on my hands and knees. Yesterday I finally knocked out the old 1930's fireplace in our lounge. It had been blocked up with firebricks and had a really dismal surround done when fuel was on ration I think. Anyway I now have a lovely 18/half inch wide opening that will take a proper fire basket...its nice and deep and hopefully wont smoke! will be finishing off tomorrowwith all the nice bits I have bought to trim it. I put this down to 'must be feeling better' My nicknae 'Bob the Builder' is being bandied around once more...I am happy
lodgerUK_NE christine_fay
Posted
That is so positive and you should be so proud of yourself. I am.
You made me smile and remember the day I could actually peel the potatoes standing up.
it does not matter that it took so long. Doing what you can, when you can, makes your endorphins flow and you feel good, even if you can only work 30 mins at a time and have to pace yourself.
Yes PMR and GCA are a total nuisance, yes they change the quality of your life but they don't destroy it.
I retired at 60 and swanned around for 8 years, snapped a tendon and 9 months later after a complicated op had to learn to walk again. Then GCA struck - boy did my life change - what did I do - I helped to start the national charity and then started up the PMR & GCA Northeast charity, which I still Chair. Yes the past 10 years have certainly been interesting to say the least.
Keep smiling Bob the Builder.
Anhaga lodgerUK_NE
Posted
Oregonjohn-UK FlipDover_Aust
Posted
I thought only poms whinged?? Great advice if you are mobile........!! Hope you break thru' the barrier and get to 10 feet.
linda17563 FlipDover_Aust
Posted
I hate the people who always say you look well.....my sister who struggles to walk with RA gets told the same....we now say......it`s the drugs!!.......
?Also when people say....yes, I get tired......that`s annoys me the most....I say it`s bonecrushing fatigue that you get with Polymyalgia, not just tiredness!!!
lodgerUK_NE linda17563
Posted
Give them the link to ' The Spoon Theory' - maybe a postivie outcome?
linda17563 lodgerUK_NE
Posted
AlVB FlipDover_Aust
Posted
I feel much frustration when people don't listen/take time to understand PMR and come up with'have you thrown runes/tried reiki/spirolina/manuka/latest heath 'discovery'.
EileenH AlVB
Posted