"It's all in your head": When I hear this... - PMRGCAuk

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"It's all in your head"

Constance13 profile image
164 Replies

When I hear this expression I am so angry. It has never actually been said to me personally but.....!

When I think about it I "wonder" - could it be (at least a little)?

When I read, listen to the radio, am on my laptop, me mind is 'occupied' and the pain is less - even not there?!? The PMR is 'sleeping', the arthritis (inflammatory) is - where?

If I get up - ouch!🥴 If I try to do some housework - 😕! So????

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164 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Distraction therapy….takes your mind off the problem/pain temporarily, but doesn’t mean it isn’t there, just pushed into the background for a while.🌸

Constance13 profile image
Constance13 in reply to DorsetLady

Quite! Can't be 'distracted' all day though! That would send me barmy.😂😂 I'll stick with the pain.🤯

SheffieldJane profile image
SheffieldJane

Our frame of mind definitely ratchets the pain up or down depending on our mood and absorption with interesting things.

PMRpro profile image
PMRproAmbassador

But is the pain there when you listen to the radio while doing the housework?

Constance13 profile image
Constance13 in reply to PMRpro

You must be joking, I do mention 'housework' occasionally - I don't DO any!🤪

PMRpro profile image
PMRproAmbassador in reply to Constance13

Mmm - but that is the test as to whether it is "all in the head" surely?

Constance13 profile image
Constance13 in reply to PMRpro

Well! My housework consists of making the bed, cleaning the sink/basin and cooking. I pay for the rest. What I should of said is "standing up" etc etc.

PMRpro profile image
PMRproAmbassador in reply to Constance13

Er - IS there much more to housework?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Dusting and hoovering…or not as the case may be 😂🤣 for some…no names, no pack drill!

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

Trouble with dusting is that it is all there again after a couple of hours ;)

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Just moves about…..🤔

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

A friend told me years ago about a vacuum thing that you sit in the middle of the room and close all doors and windows. It creates a vortex of air that whirls all the dust up off the surfaces and sucks it through a filter to remove it. You just have to have cleaned the room thoroughly before the first use and then use it regularly. The only think that didn't appeal was the price!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

I can imagine - I’ll go on ignoring dust I think!

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

I struggle to find an hour's worth of cleaning a week for my cleaner now - and it is less dusty!! I suspect OH's room contributed - it was impossible to clean around his computer desk and he protested when asked to leave the room!

There is the incentive to be tidier so I will keep her on for the things that I do struggle with - like changing bedding and vacuuming! I can do it, but am utterly exhausted by the time I'm finished!!! Trouble is - she moves things ...

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Mine’s the opposite, she dusts round things…..but as you say useful for other things….certainly helpful when joints replacement done….and remaining shoulder (right) doesn’t take kindly to vacuuming, certainly on a regular basis…and joking aside, I do have issues with dark corners!

Plus she’s taller than me, and that comes in handy as well..only once a fortnight so not exactly a fortune to pay out..

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

Unfortunately - mine is even smaller than me!!!!!!

Margaret1951 profile image
Margaret1951 in reply to DorsetLady

I have someone starting to clean my house once a week, she tells me she has ocd is it, so should be spotless 🙏🙏🙏 since my complete hip replacement I am finding it harder to do it all. I will send her to you if good 😂😂😂

jinasc profile image
jinasc in reply to PMRpro

I am lucky, Susan lifts things up put puts them down in the same place. Susan knows that I will spend ages looking for something that I think was there and it is not.

The only thing she will not touch is my desk and I don't blame her at all.

We have a new vacuum, I don't even know how it works.

PMRpro profile image
PMRproAmbassador in reply to jinasc

I don't find it rocket science really ...

jinasc profile image
jinasc in reply to PMRpro

Ah but you have something I don't have a 🧠 that works 😈 🤗 👍

PMRpro profile image
PMRproAmbassador in reply to jinasc

I meant lifting something and replacing it when dusting!!! My brain doesn't help a lot with doing cleaning - it just hates it ;)

jinasc profile image
jinasc in reply to PMRpro

Finally something in common, apart from sheer doggedness. I always knew there would be something that we were joined at the hip about..........😘

PMRpro profile image
PMRproAmbassador in reply to jinasc

It is an invention of the devil - there was no need at all for god to create dust ...

I look at my neighbours here and wonder what on earth they are looking for when cleaning!!! Life's too short ;)

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

You should be used to that having lived in Germany for such a long time!

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

I think some people are even worse here!!! Our generation too!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Old enough to know better!!!Like what we are 😊

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

OTOH - ingrained in them!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

No good trying to make up by saying “our generation” after saying you weren’t old enough to appreciate Elvis yesterday.. thereby implying some of us are! 🕺..and proud of it I’m pleased to say….😊

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

Everyone a couple of years older than me were Elvis afficionados. That's all it took - more Cliff in my class.

bonio profile image
bonio in reply to PMRpro

I have a happy friend who tells me a house with no dust is a sign of sadness as the occupants must have nothing better to do....it's become a moto! Living in the Peak District with a lovely wood burning stove and mahogany furniture every particle shows, best to leave it a little as just comes back each time moved. 😁

PMRpro profile image
PMRproAmbassador in reply to bonio

Exactly! I find letting her dust once a month is more than enough - bathrooms one week, kitchen one week, vacuuming most weeks ... She only comes for an hour!!!!!!

borednow profile image
borednow in reply to jinasc

I've got a vacuum like that. Fortunately my cleaner likes it and she certainly knows how it works!

ZatMas profile image
ZatMas in reply to borednow

My daughter bought me a RoboVac for Christmas best invention ever. I can even control it from my phone. Does a great job. Best present I’ve ever got.

Nextoneplease profile image
Nextoneplease in reply to PMRpro

That’s hilarious 😂😂 I want one!!

HeronNS profile image
HeronNS in reply to PMRpro

That's what I thought a Central Vac was, until I got one and it is only central because all the dust goes into a central canister. I had originally envisaged it as something like described! (I do miss it in my condo though. I find vacuuming with a regular vacuum cleaner really makes my back ache. Second only to cleaning up cat furballs vacuuming is my least favourite activity. I'd rather shovel snow! By the way, do rabbits make good pets? Thinking about future furry companion. Not sure I could stand another furball manufacturer.)

PMRpro profile image
PMRproAmbassador in reply to HeronNS

My neighbour has a Central vac, most offputting when you go in the basement garage and she's using it!!!Rabbits? No idea - not a pet person at all.

HeronNS profile image
HeronNS in reply to PMRpro

I used ear protection when I was using it in the basement!

PMRpro profile image
PMRproAmbassador in reply to HeronNS

No - the collector is in her garage. Not that noisy - once you know what it is it's OK

HeronNS profile image
HeronNS in reply to PMRpro

Ours was (well still is but not ours any more) in the basement. No garage. It's tucked under the basement stairs. I found it much easier to use and stronger suction than the canister vacuum we'd had previously. Dragging the long hose around was much less stressful on my back than the wand on the vacuum I have now. I've even bought a stick vacuum as people told me that would be better, but it isn't. Is this backache "all in my head"? We must have bought the central vac decades ago, the children were still young. Replaced it not long before we moved, so it didn't owe us anything. Apparently the daughter in law who now lives in that house there doesn't like it. 🙄 Found this out when I was desperately trying to figure out if there was any way to install one in the condo. (No, not feasible.) But I kept my mouth shut, hard though that was at the time. Of course she may just be doing what I do, finding a way to get one's partner to undertake a distasteful task. 😉

PMRpro profile image
PMRproAmbassador in reply to HeronNS

I find the stick cleaner not too bad as long as I keep my back bolt upright and only use it for a short time. But that is the cleaner's task - saves me thinking of anything else ...

Longtimer profile image
Longtimer in reply to PMRpro

My sister with RA uses a carpet sweeper most of the time....like our mother's did!...

PMRpro profile image
PMRproAmbassador in reply to Longtimer

But surely that's wose than even a brush?

Longtimer profile image
Longtimer in reply to PMRpro

It's just walking with a light sweeper....she can manage that....that old make Bex Bissell...is still going strong!

PMRpro profile image
PMRproAmbassador in reply to Longtimer

I do that with the stick - but the motor bit is weighty, needs a support strap over the shoulder I suppose

Sharitone profile image
Sharitone in reply to HeronNS

Yes, vacuuming really sucks!

PMRpro profile image
PMRproAmbassador in reply to Sharitone

Oh ha!!!!!! Except when it doesn't and then you are in trouble ...

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Sharitone

Boom, boom ,tish! 😂🤣

Blearyeyed profile image
Blearyeyed in reply to PMRpro

Was that called a TARDIS?

jenerino profile image
jenerino in reply to DorsetLady

My friend once said, when we die we go "dust to dust ashes to ashes" and that's why I never dust, cos I might be dusting away a friend!😅

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to jenerino

Good thinking😊

Constance13 profile image
Constance13 in reply to PMRpro

😂😂🍀

Blearyeyed profile image
Blearyeyed in reply to PMRpro

Washing the clothes , I still do the washing because I'm not quite prepared to have the OH turn my bed sheets mucky grey or my best bras dirty pink , AGAIN!

He does carry the stuff up and down and I sit on a pixie stool staring into the abyss and fill the washer or drier , making sure I choose the programme it is on.

The girls will never forgive him for the day he felted their best wool jumpers and shrank them to a size fit for terriers.

PMRpro profile image
PMRproAmbassador in reply to Blearyeyed

They do that deliberately I'm sure ...

Yes - I don't even like the girls doing my washing since all their underwear is grey too - what is the difference between doing 2 lots of washing mixed and 2 lots one white and one not? To try to save me one bending action I had 2 washing baskets - one "60C/white" and one coloured. It didn't matter how often I explained pale blue work shirts were the former, he could not get it right. So I gave up in the huff - he was supposedly an intelligent being after all.

Blearyeyed profile image
Blearyeyed in reply to PMRpro

Don't get me started . For years , even whilst the girls were home I would separate the washing in the bedrooms and then ask the OH or the girls to bring down the load of whites or darks because i wasn't allowed to carry them up and down . They would then , for some batty reason , come down with a freshly mixed up set of clothes , some from each pre separated pile.

PMRpro profile image
PMRproAmbassador in reply to Blearyeyed

I won't tell you what I'd have said - I'd be banned. I would sometimes stand at the top of the stairs and chuck the items down to the bottom ...

Nymocaaz profile image
Nymocaaz in reply to Blearyeyed

One time we were on an extended trip, and I had to use a hotel laundry. While I was waiting for my wash to finish, a young man came in with a full laundry bag. He proceeded to empty it, and carefully separated darks and lights. I was quite impressed, thinking that his mother had taught him well. When he was finished with the careful separation, he took the two piles and stuffed them into the same washer! Guess he only got half of mom’s message...

Blearyeyed profile image
Blearyeyed in reply to Nymocaaz

perhaps he thought that if you separated them like that and put them in the same washer they would wash better. My OH also managed to stick one of his ties to an iron once, as he thought you put the heat up higher if the creases were bigger...and he has an A level in Physics!!!

singingloud profile image
singingloud in reply to Blearyeyed

They may be smart but common sense is sometimes lacking. Lol

PMRpro profile image
PMRproAmbassador in reply to Blearyeyed

About the same standard here - except HE had a Hons degree in physics and a PhD and DrMedHabil (the next degree above) in Medical Physics. Developed medical instruments and diagnostic tests but couldn't use a domestic appliance ...

Longtimer profile image
Longtimer in reply to PMRpro

Oh that sounds familiar, when I was on the switchboard at a university a professor shouted at me that his landline wasn't working...a cleaner had unplugged it.....I had to talk to him slowly like a child how to plug it back in!....they know what they know, and the rest, well....

PMRpro profile image
PMRproAmbassador in reply to Longtimer

I think OH might have managed that ...

singingloud profile image
singingloud in reply to PMRpro

Years ago when I was recovering from a d&c for a miscarriage, my husband did the laundry. Well the machine finished and of course I had to put the clothes in the dryer. I opened the washer and it was packed so full that when I pulled it out the powdered laundry detergent flew in my face, still dry!That was the end of his helping with the laundry!

Blearyeyed profile image
Blearyeyed in reply to singingloud

Yes, been there! My OH has done that before too when he tried to wash a king size duvet in our washing machine to hide the fact that he had blotched superglue on it while making paper models in bed. At least I know what he gets up to at night now we sleep in separate rooms.

Nextoneplease profile image
Nextoneplease in reply to Blearyeyed

😂😂😂

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to singingloud

I think some of them do it on purpose so they don’t get asked again!

Nymocaaz profile image
Nymocaaz in reply to DorsetLady

I absolutely agree. I’ve heard “But you do it so much better!” many times...

Suffererc profile image
Suffererc in reply to PMRpro

😂🤣😂🤣😂

Kendrew profile image
Kendrew

I can understand what you're saying Constance13,For the past year, to a greater or lesser degree, I've had head pain and headaches (thoroughly checked out by rheumatologist and neurologist and not GCA..... possibly occipital neuralgia, possibly steroid related with each taper, but neck issues also from a previous accident)

They thankfully have disappeared now and I've had several pain free months.

During those unpleasant months though, if I was out walking, meeting up with a friend, or otherwise engaged in some sort of activity it provided a distraction and I'd hardly notice the discomfort but as soon as I was inactive and resting quietly on the sofa, there it was again!! Happened almost every time without exception. Obviously some days the discomfort was evident whatever I did but interesting how it eased when occupied. Our bodies are so complex aren't they?

Constance13 profile image
Constance13 in reply to Kendrew

My most 'unpainful' time is lying on my recliner and listening to music or reading a book.

Kendrew profile image
Kendrew in reply to Constance13

Sounds quite blissful

Longtimer profile image
Longtimer in reply to Constance13

Music everytime...plus crosswords to try to keep the brain going....Mind and body certainly connected...

PMRpro profile image
PMRproAmbassador in reply to Longtimer

No and no!!! I used to listen to music, OH always had music in the past and as he got more deaf the volume went up. Which might have been OK - but I don't enjoy Wagner at full blast and it put me off any music! Towards the end when he had music on I;m sure the rest of the village could hear it - 2-300m away ;)

Longtimer profile image
Longtimer in reply to PMRpro

No Wagner for me thanks!....classical depresses me, you won't hear it in this house!

Right now listening to Paul Gambacchini Pick of the pops!!....love rock, ballads..all.sorts from 60's 70's and some 80's....tomorrow 70's Jonnie Walker.....how old fashioned am I!!

Got ABBA and Ed Sheeren CD's for xmas.....lovely

Sometimes makes me want to get up and jump about....then I just do a bit of a jig in the chair...with my arms!......😂

PMRpro profile image
PMRproAmbassador in reply to Longtimer

Oh no - got to be classical if at all, But his thing was opera and musicals - mine is more medieval polyphony:)

Longtimer profile image
Longtimer in reply to PMRpro

Shows my intelligence to yours!....

Would OH not wear headphones?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Longtimer

Not necessary, just personal preference…me anything from 50s/60s, some more modern stuff to less sombre classical…tenors in particular! Elvis Presley to Andrea Bocelli…..

Hubby had a lovely tenor voice, as did his father and grandfather….son is baritone. Hubby was always singing around the house, I do miss that…..it’s always nice to go to son’s and hear him singing.

Longtimer profile image
Longtimer in reply to DorsetLady

Now you are talking....Elvis, my all time favourite...."If I can dream".....fantastic.....My son has a lovely voice too.......me, can`t sing a note!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Longtimer

Me neither…all down to the male line!

Yet I love music, always got something playing…can remember as a young teenager listening to Radio Luxembourg on a very dodgy transistor radio under the bed covers so mother couldn’t hear it and tell me to get to sleep! No such thing as headphones then.

Longtimer profile image
Longtimer in reply to DorsetLady

Yes, me too....they can take the T V......but not my music...would love a jukebox in the summerhouse!...but somehow don 't think the neighbours would approve!..

Blearyeyed profile image
Blearyeyed in reply to Longtimer

try the cordless headphones whilst you boogie in your deckchair

York54 profile image
York54 in reply to DorsetLady

I did the same! I had an earphone , Kid Jenson was one of the DJs I remember.

PMRpro profile image
PMRproAmbassador in reply to Longtimer

Not recently - he had done before he was ill.

PMRpro profile image
PMRproAmbassador in reply to Longtimer

Nowt to do with intelligence - maybe I'm not quite old enough for Elvis?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Cheeky! 😳

herdysheep profile image
herdysheep in reply to PMRpro

I can remember the first time I was allowed to buy a record with my pocket money - parents chose Harry Belafonte Island in the Sun. With money I had secreted I went on my own and got Jailhouse Rock!

seamaid profile image
seamaid in reply to herdysheep

" yes please " to both ,

Bridge31 profile image
Bridge31 in reply to herdysheep

My Dad wouldn’t allow me a record player so I saved up and bought a second hand one for a pound from a friend .My first record was Telstar by the Tornados, I wouldn’t choose that now 😂

My first LP was Peter, Paul and Mary

Longtimer profile image
Longtimer in reply to Bridge31

My first memory is a sad one for me...my father died when I was eight, think my sister played on the Dansett record player, "Tell Laura I love her".....

Bridge31 profile image
Bridge31 in reply to Longtimer

Oh that’s so sad. 🤗

Ebony Eyes by the Everley Brothers still makes me cry 😥

Longtimer profile image
Longtimer in reply to Bridge31

Yes, I get that....watched programme on their lives few weeks ago....fabulous....

herdysheep profile image
herdysheep in reply to Bridge31

I can't remember what was on the flip side of Ebony Eyes, but it was just as good. Can probably remember all the words even now!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to herdysheep

Walk Right Back….

herdysheep profile image
herdysheep in reply to DorsetLady

Ah, yes. If no one is listening, I could sing that now!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to herdysheep

Carry on then..do you good 😊There are some advantages in living on your own I find! Singing out of tune is just one 🎵

herdysheep profile image
herdysheep in reply to DorsetLady

☺️😅

Longtimer profile image
Longtimer in reply to DorsetLady

Two excellent songs on "A"side and "B"...

piglette profile image
piglette in reply to Bridge31

My first record was Lollipop, I got it secondhand! My first LP was Grieg’s piano concerto.

Longtimer profile image
Longtimer in reply to herdysheep

On yes!....

jenerino profile image
jenerino in reply to Longtimer

"All I need is the air that I breathe" reduces me to jelly even now!

cycli profile image
cycli in reply to Longtimer

nothing to do with intelligence. I'm around140 and I like beatles, queen, moody blues, black sabbath, pink floydd, bach fugues, chopin, Bach mass in B minor, st John passion, all Beethoven with which I meld almost totally especially piano sonatas played by alfred brendel probably the best interpreter of his music., Mozart, albinoni and all that period Handel, Try Alceste for sheer joy. PMRpro, do listen to the pastoral , beethoven. It will rejuvenate you.

herdysheep profile image
herdysheep in reply to cycli

I would share your list, probably minus Black Sabbath, add Paul Simon and various others according to mood, plus Vivaldi and some Tchaikovsky.

HeronNS profile image
HeronNS in reply to Longtimer

I agree about Wagner. But surely you would enjoy Carmen, for example? And a lot of "classical" music has been used over the years as background sound in films, including cartoons. Years ago read that there are two pieces of music which can work as bridging pieces. Rhapsody in Blue (Gershwin) can introduce a classical music lover to the joy of jazz, a gateway to more "popular" music. And Bolero (Ravel) can act similarly to introduce the uninitiated to "classical" music.

Longtimer profile image
Longtimer in reply to HeronNS

I know both of them, I agree about music in films.....but somehow would never choose to listen to them...don't know why. Perhaps because I do have several ballads which are relaxing.......Ravel's Bolero, very familiar...Torvill and Dean!.......

York54 profile image
York54 in reply to Longtimer

Snap ! Love pick of the pops ……. Oh and a bit of Pavarotti now and again 😃😃

Longtimer profile image
Longtimer in reply to York54

Abso!utely....the oldies being back so many memories too!

Blearyeyed profile image
Blearyeyed in reply to Longtimer

I will join you in a chair disco anytime , xxx

Nextoneplease profile image
Nextoneplease in reply to Blearyeyed

I do a version of it all the time. Anyone remember Mr Motivator from the 80’s? He has lots of 12 minute exercise sessions on YouTube and I often put them on., sometimes do them as suggested, sometimes just jig around in the chair 😄 Seriously find his sessions quite cheering x

Blearyeyed profile image
Blearyeyed in reply to Nextoneplease

I have enjoyed Wake Up Sunday Sessions with Mr. Motivator live on stage at a music festival I go to with my girls. He was one of the biggest draws of an audience there , which is impressive when you think he was on at 10 am and half the place had hangovers. They had to move him to a bigger stage after the first year. Even if I can't exercise I like watching him , he makes me feel like I've done something energetic even if I had my feet up with a cup of coffee

Nextoneplease profile image
Nextoneplease in reply to Blearyeyed

Oooh Mr Motivator live!!! Knocks YouTube into a cocked hat I bet 😄I agree, he’s so positive, he makes me feel better no matter what I can or can’t do 💪xx

Blearyeyed profile image
Blearyeyed in reply to Nextoneplease

He still rocks those lycra suits as well , when my youngest ( whom is known on here as Grandma ) was very small she dressed up in her lycra rainbow tights and a tutu to take part and he got her up on stage with him for most of the class she was tickled pink.

Nextoneplease profile image
Nextoneplease in reply to Blearyeyed

Great stuff 👍 x

piglette profile image
piglette in reply to Nextoneplease

I saw Mr Motivator live at a special charity do we had at Legoland. Peter Andre was there too. Those were the days.

Nextoneplease profile image
Nextoneplease in reply to piglette

In those days I used to do three aerobics sessions a week, no problem, after long days at work, and looking after a family 😄 Mr Motivator has aged with me, but in a good way. Really deserved the MBE he got last year, I thought x

Nextoneplease profile image
Nextoneplease in reply to Blearyeyed

I like some of his sayings too - like “Never put the keys to your life in someone else’s pocket” Cliches all the way,I know, but still…🤦‍♀️

York54 profile image
York54 in reply to Nextoneplease

Remember the Green Goddess ?

Nextoneplease profile image
Nextoneplease in reply to York54

Oh, I do 😊 I always found her a bit much, though - Mr Motivator even then got me started for the day ahead 😃

York54 profile image
York54 in reply to Nextoneplease

She ever looked to break a sweat! Mr Motivator was on the news recently, he was honoured in the New Year. He and his wife looked amazing !

Nextoneplease profile image
Nextoneplease in reply to York54

Yes, the Green Goddess was kind of out of my league….so pleased Mr M was honoured x

Constance13 profile image
Constance13 in reply to PMRpro

I like things a little less "somber" than Wagner. Daren't say that to my husband.

PMRpro profile image
PMRproAmbassador in reply to Constance13

About 4 or 5 days before he died he was demanding Goetterdammerung (Twilight of the Gods) but it had to be by Placido Domingo. Which he knew he had on his computer so got very agitated when we couldn't find it online. He was also quoting Dulce et decorum est pro patria mori (It is sweet and fitting to die for one's country) by Wilfred Owen. No idea why!!!

HeronNS profile image
HeronNS in reply to PMRpro

Sometimes I think about the hymns I want sung at my funeral. :D

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to HeronNS

I’ve got my music sorted - but not hymns - not going to be a religious service.

Longtimer profile image
Longtimer in reply to DorsetLady

A lady I know died recently, she had a really good sense of humour...non religious sevice, cremation.......music....Great balls of fire!!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Longtimer

Hoping mine will be similar - but I’ll have to go some to match hubby’s- almost everybody said they’d never enjoyed a funeral so much.

Longtimer profile image
Longtimer in reply to DorsetLady

That's good....my husband's favourite song is "Comfortably numb!" ....it would be so apt!...

Blearyeyed profile image
Blearyeyed in reply to DorsetLady

We had ' Think of ME' from Phantom of the Opera for my Mums funeral as the music to silently contemplate to.

York54 profile image
York54 in reply to Blearyeyed

Ah Pink Floyd my hubby is a fan too lol x

York54 profile image
York54 in reply to York54

My answer of Pink Floyd was for Longtimer…. Sorry!

Constance13 profile image
Constance13 in reply to PMRpro

I'm quite sure he knew what was happening.

PMRpro profile image
PMRproAmbassador in reply to Constance13

Yes - but why that?

No funeral - pure cremation for me, same as him. Sometime when Covid is gone we'll arrange a party back in the UK - no-one would have come here. Can't scatter ashes here - not allowed.

Constance13 profile image
Constance13 in reply to PMRpro

'Scattering' not allowed here either. I'm going to chose a tree down by the Möhnesee. Earth to earth....!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Constance13

I’m going to join OH in the woodland burial grounds we chose years ago - in the countryside, but overlooks a pub. What not to like!

Sharitone profile image
Sharitone in reply to DorsetLady

More environmentally friendly than cremation!

jinasc profile image
jinasc in reply to PMRpro

I will have them in the back garden and look for a rose called David.

Just now I am listening to Johnny Cash playing and singing with the Royal Philharmonic Orchestra.

I am wiggling in my seat and singing along with my non-musical voice Good job the cottage is detached and the walls are around 3 feet thick. BTW 🥃 at my side.

Longtimer profile image
Longtimer in reply to jinasc

'All the CD's done in last few years with the Royal Philamonic Orchestra are excellent....especially Elvis.....Will have to get JCash up on Spotify....my jukebox!....

Nextoneplease profile image
Nextoneplease in reply to Longtimer

Another Johnny Cash fan here - love the man in black - all his songs tell a story 😊

Longtimer profile image
Longtimer in reply to Nextoneplease

Bridge over troubled water for me....

Nextoneplease profile image
Nextoneplease in reply to Longtimer

There are so many 😊 I love Walk The Line (the film with Renee Zellweger was good too), Ring of Fire, A Boy named Sue etc, etc.

Blearyeyed profile image
Blearyeyed in reply to PMRpro

My Mum was a Director and Dance Teacher, after Covid the Societies she used to work with are going to organise a memorial concert for her with money going to Macmillan.

On the day of her funeral , to help all of her friends have chance to feel they had celebrated her we asked everyone to choose either a song they remembered her by , or a piece of music and then asked them all to play it and to sing or dance their socks off at the same time of 4pm . People really seemed to connect with that and it made them feel better about not being able to attend the funeral.

prunus profile image
prunus in reply to PMRpro

Years ago when my parents were alive their volume made their next door neighbour complain inspite of all doors and windows being closed and double glazed.

Blearyeyed profile image
Blearyeyed in reply to PMRpro

My friends Grandfather used to deafen his neighbours like that but when you got inside his house he would be sitting there with his cordless headphones on , totally oblivious to the fact that he had left the normal volume turned up as well. Pretty sure he was often listening to Wagner on those occasions too, what is it about Wagner.... Perhaps they should do a study on the correlation between a love of Wagner and premature deafness.

PMRpro profile image
PMRproAmbassador in reply to Blearyeyed

To be fair - chemo gets the blame for the deafness, not Wagner ...

winfong profile image
winfong

As for the "it's all in your head," there's nothing worse. (I have IBS as well, which seems to be more "in your head" than even PMR.) I had a GP/PCP who's answer to pretty much everything except for glaring physical symptoms was a veiled version of that. It was only when I switched docs that I learned all about my different vasculitides (the original doc hadn't even noticed I lost 20+ lbs). Grrr

PMRpro profile image
PMRproAmbassador in reply to winfong

He needs a bit of retraining - unexplained weight loss is ALWAYS a red flag ...

winfong profile image
winfong in reply to PMRpro

No kidding. He was honestly that bad though. Just heard he had retired. Good riddance. I think he had retired in his mind maybe 10 years previously.

The new doc I got was all over it. Of course, he originally thought it was cancer ... But he definitely knew something was wrong.

Well, if nothing else, that original doc did teach me to take a lot more charge of my own health care

Blearyeyed profile image
Blearyeyed

As the pain is often in my head for days, no matter what I'm doing .

If it is sleeping in there whilst I'm busy I wish it would push off and take a nap somewhere else instead.

The ringing in my ears is in my head too, although it can appear a bit quieter when my mind is occupied it usually just tries to drown all the beautiful sounds out.

Suffererc profile image
Suffererc

Whether people actually say it, you know they are thinking it, the way they treat you😊

Maudie19 profile image
Maudie19

I have been told by a family member that perhaps it is could be tension. They said it kindly meaning well but basically they don't understand.

Longtimer profile image
Longtimer in reply to Maudie19

Gave up years ago bothering to explain....waste of timw....

cycli profile image
cycli

They may mean well but they could also make the effort to try and understand. In reality it IS all in the head Constance. Everything our chemical and nervous system experiences is interpreted by the brain and put into a picture, feeling, chemical response which we then see, feel, experience. Everything we see at the same time as someone else is marginally different from their experience so truly everything is actually subjective. Pain can genuinely be controlled with the proper mental training I am told. I wish I had that because recently the GCA has been off the wall and is now only just about being controlled. Distraction helps and when absorbed in something you sometimes don't feel the pain. GCA pain is however so intense especially when pushing the eyeballs forward it is impossible to be distracted. Reading, watching, even exposure to light is a nono. Listening quietly to soothing music helps in the dark.

Constance13 profile image
Constance13 in reply to cycli

As I've pointed out to many!

Luciejc profile image
Luciejc in reply to cycli

I have found an ice pack really helps. I bought a really small one at Dollar Tree. It fits about 8 ice cubes. It works well on my temple, jaw and neck/shoulder. I discovered this relief on my own.

cycli profile image
cycli in reply to Luciejc

thanks Luciejc. Worth a shot next time.

Nightingales profile image
Nightingales

Reading these posts have certainly distracted me.🤣🤣I have enjoyed going down music memory lane and visions of swirling dervishes vacuum cleaners. But it’s simple for me, reading I am sitting down, and as you said standing up brings all the pain rushing back. I would love a cleaner but I can never get the house clean enough to not be embarrassed to invite them in. And then there is COVID 🤪

Constance13 profile image
Constance13 in reply to Nightingales

Believe me - they will have seen worse!

PMRpro profile image
PMRproAmbassador in reply to Nightingales

I thought that - but it is daft. They are paid to clean, not judge! They want/need the money. It;s like saying you can't go to the doctors because you are ill, must get well first ...

There are cleaning companies who will come in and do a spring clean - and then you can send in the "ordinary" cleaner for maintenance. Have a look at some of the (awful) programmes on TV, one is called the Big Clean I think, and you will realise that yours is probably not bad at all!

herdysheep profile image
herdysheep in reply to PMRpro

I know it is slightly daft to think that but local cleaners are a necessity because of rural living, but also the biggest gossips! Covid threw a lot of people into cleaning mode, but didn't seem to get me there! Until it does, can't face finding a cleaner I can tolerate, let alone if they can tolerate me. Silly life, isn't it?

PMRpro profile image
PMRproAmbassador in reply to herdysheep

Which is why I suggest the springcleaning option - a town company who arrive in bulk in a vehicle for the day. My daughter doesn't have a cleaner every week - and it is only 2 or 3 hours but sometimes 2 or 3 turn up, an hour each and gone! Now mine is so much less dusty I'd let anyone in - we'd had a major turn out to make room for an electric bed in the living room when the girls were here before OH died and they also took the net curtains down - they were utterly disgusting! I have wooden/tiled floors throughout and I didn't even put the small Persian carpet back down and that has made it much easier too. Now all I have to think about is keeping it fairly tidy - though there is a lot of filing to do that I can't get my head around yet ....

Nightingales profile image
Nightingales in reply to PMRpro

You are right. I need to have a team to do a thorough clean then start again. I used to have a good cleaner but because I haven’t developed any antibodies I am nervous about a bunch of strangers descending on me. But the dust doesn’t look any worse at 1/2 inch than 1/4 inch 🤣🤣

PMRpro profile image
PMRproAmbassador in reply to Nightingales

True - was always my argument!!!

I don't blame you - especially in the UK. Here employees have to test regularly and we also must wear FFP2 masks to go pretty much anywhere indoors with other people. I've even summoned up the courage to use the trains - not buses yet - but there really aren't many in our trains and I choose a set of 4 seats next to the door so fresh air at every stop and well away from anyone else. My cleaner had Covid some weeks ago - husband +ve at work - like ALL his colleagues! - she had one +ve LFT but the PCR came back -ve. It was just before she should have come to me and the shop downstairs so no contact. But let them in - keep away from them and open the doors and windows when they are done. If they don't understand why - you don't want them!!

Blearyeyed profile image
Blearyeyed in reply to PMRpro

It's silly isn't it but I know a few people including my Auntie and my best friend whom insist on doing a little once round the day before the cleaner comes so it doesn't look that bad.

PMRpro profile image
PMRproAmbassador in reply to Blearyeyed

Oh yes - nuts!!!! I mean - why would you?

cycli profile image
cycli in reply to Blearyeyed

my mother was the same...she was bipolar so a little nuts at times. she wanted the house to look well and I couldn't make any sense of it.

GOOD_GRIEF profile image
GOOD_GRIEF

Even before PMR, my idea of housework was to sweep the room with a glance.

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