PMRGCAuk
6,923 members • 10,920 posts

You know, we should all stop moaning about our illness.😟😒😏😂😂

Because, we are “privileged” to have this very interesting illness which the majority of people (including most of us!!) have/had never heard of - and which even a great many doctors and rheumies have less knowledge of the illness than us - the patients.

Added to this we have our own experts on here and we have found soooooo many “friends” all over the world - who can boast of that except for us?

So, fellow sufferers, how about calling this illness, well if not “friend” our “ companion”?

PS. The newbies are not going to agree with me I fear.😏😏

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They might if they are on a Pred high!

Cheering thoughts Constance.

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Constance, the sun must be shining on you today, and you have put on your rose tinted specs, just going to look for mine. I can see clearer now hmmm! I can see a half full glass, and I admire your positive attitude, and thank our experts for their unfailing help and advice.

To moan or not to moan......

Emma Byrne a neuroscientist says we need teach children to swear effectively" Profanity soothes the brain and even relieves pain". A researcher at Keele University " had volunteers plunge their hands into icy water: once whilst swearing and once when using a neutral word. He found they could stay immersed for 5O% longer when swearing." Sunday Times. 27.05.18.

So perhaps moaning has the same effect.😟☹️🤔🤔???

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As a friend on FB pointed out this morning - those who see a half full or half empty glass have missed the point. The glass is refillable...

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Be my friend on FB. Catherine Polumbus ...

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Surely if a 'glass' is regarded as 'refillable' then the observer IS an 'optimist' !?

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Yum. Icy water sounds really good today.🤳

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Had to take my those specs off, sun has just moved elsewhere.😕

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So now you have scientific evidence to allow you to swear. Always best to blind others with science when you don't agree.

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Hee hee! I was always taught not to swear and I don’t do it unless something has REALLY REALLY upset me. My husband is angry if I DO swear - he says it’s a lack of self control (which makes me feel like swearing again)!!!

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The mother of a friend of mine told her " you are so pretty when you don't swear dear". I won't tell you what the reply of my 40something friend was. Air. Blue.

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Pffft - more in common than just a name then! Mine's very prissy too.

Me? Tourettes syndrome is a sure sign of a flare - and it was PMR that caused it, not pred.

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I never swore until I had my 1st child. After 5, it was not pretty!

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Not sure wether the FB message was for me but, in case it was I had better reply.

I left FB a while ago - it just got on my nerves.💐💐

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So true, swearing does soothe the brain and relieves pain.., even in children 😀

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Just seeing this! Mary,on, Agree wholeheartedly!

sciencealert.com/swearing-i...

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We who do have always thought this good to be backed up🤓🤓🎓🎓

Thanks for the link, have signed up.

Hope you are feeling better, after latest setback.

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Thank you!

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Excellent sentiments I feel!

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Definitely not a friend but a companion that occupies much of my thoughts and determines most of my actions.

To add to your more positive vibe it seems pred means my bodies natural reaction to mozzi bites is greatly reduced and I'm covered in them at the moment. Previously I'd be writhing!

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Every silver lining needs a cloud :-)

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Yes We are fortunate because If you have GCA you may have gone blind. Eyesight is so precious I am grateful to steroids for saving me from this. Let’s look on the bright side X

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Perhaps if people feel the need to swear they should take a leaf out of Shakespeare's book and at least be creative. renfaire.com/Language/insul...

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Thank you! I’m going to switch to “Fie!” whenever I need an expletive. I’ll be able to express my pain/frustration even in front of the grandkids. Also pretty sure the “lard-bloated footfall” applies to me on prednisone. 😉

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I wouldn’t remember the expletive I was suppose to use.😂

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So true 😊

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Hello, I'm new to this and I get the idea of seeing PMR as a companion. I'd rather befriend it than ignore, fight or argue with because if I do this PMR always seems to beat me into submission. So I'll befriend and learn from it (fingers crossed). I'm just a slow learner at times. Thank you for your post.

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Good to know that even at the beginning of your journey you are willing to see it as a “companion” instead of a frightening enemy, it will make it easier to live with, believe me.

Please remember you are NEVER alone. What you are going through we have ALL gone through, we understand and all of us are here to advise, help or just talk at all times.

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Thank you. I've learned a lot off this site. All very surreal sometimes.

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In my experience, working with terminally ill/dying patients, it seems the majority of their family and friends usually expect them to "fight" their disease/illness with every ounce of energy, strength and courage they have... even when the chances of "winning" are slim to none.

Hypothetical question... why would we encourage a terminally ill cancer patient to "fight" their disease, but not encourage someone affected by a debilitating, long term auto-immune disease, to at least entertain and "be in touch with" their anger, frustration and negative feelings about the one thing that has unequivocally changed their life, for the worse?

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I'm a relative newbie. I like the positive vibe x

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I never wanted to be one of the one in 50,000.

Was I privileged to get Giant thingy or not, that is the question?

:)

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It was never meant to be taken seriously jinasc, just a little bit of light humour to soften the load.

💐💐

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Constance

That probably was my warped sense of humour obviously coming over incorrectly - I thought the thread was funny and it made me smile.

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👍. Thought for one horrible moment someone had taken it seriously.😏😂

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Again... I'm sorry I did.

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It meant you met me ;-)

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LOL! Not funny, but we’re exclusive-or not!

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Give me a few hours for the Pred to kick in and I will be able to move my arms enough to type a response. Meanwhile, I will get myself a decaffeinated non-sugary coffee and go swear at the dogs. :)

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👍😂🐕. Put a drop of brandy in the coffee.😂

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Oh Constance, I am known as the 'brandy queen' - I lived on it for 5 years............best thing those French medieval monks ever made...............brilliant pain killer.

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It was my favourite tipple as well, but about 3 years ago I went off ALL alcohol - can you believe that? (damn pred)! I can’t cope with brandy even now, except if I have a cold or sore throat - then I have a dessert spoonful in my coffee.😂😂

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Really? I don't drink, but brandy sure outweighs Morphine!Might give it a twirl.

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Brandy and coffee are much better drunk in a glass and a cup, not together in my opinion!

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A caffe corretto! Which, depending on where you are, comes with the alcohol already in the cup, as an espresso with a shot in a glass or an espresso with the bottle handed to you...

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No, definitely keep them separate for me if brandy. I might accept grappa and coffee together though. Even sambucca!

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I remember a ghastly (to me) drink made by Irish stepmother - Irish coffee. It was the cream which did me in.

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We live in Germany and the hotel opposite sells Irish coffee - it’s costing us a fortune, we can’t keep away. Delicious!

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I couldn't stomach the cream. Literally. 🤢

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We’ve been making our own lately, it’s cheaper.😀 Sometimes we run out of cream so we just have black coffee with honey and whisky in it - also delicious.🍹💥

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Everyone to their own taste! Someone local has started making mead. A bit sweet, but it grows on you.

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Poor doggie!

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I found this interesting and agree. I keep looking for the positive on here and some is and some isn't. I find this illness a nuisance more than anything and dislike having to take drugs. Thanks friend and good luck to you wherever you are. I am UK

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I live in Germany. 💐💐

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where in the UK? I am in Margate

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Lincolnshire

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where in the UK? I am in Margate

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Yes look on the bright side, just think of really serious and life threatening illnesses we could have I’m off to Yoga class now Cheers

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I agree with you, too!

Plus we get to learn a whole new language...I was dxd in Jan 2018 and it took me the first three months to learn to say polymyalgia rhuematica properly without pausing for a whole minute...got the poly right then struggled with the rest. And the 'technical' term: niggle. That was a new one.

But now I am working on repeating PMRPro's wonderful explanations including chugging and mopping!

Thanks all a million!!

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I haven’t learned chugging & mopping yet :( And since October 2016 - I still can’t get Polymyalgia right most of the time.

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What still irritates me no end are the people (everyone) who've heard of fibromyalgia and immediately think that's what you've got. I head them off at the pass now. If questions of health come up in conversation (which strangely ;) occurs more often as I and my circle age) and I say I have polymyalgia and they start to open their mouth to ask me "is that like fibromyalgia?" I hastily add it's not fibro, it's a completely different disease. How come everyone has heard of fibro but PMR is unknown?

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You are so right...I would fumble my way slowly through "poly.....rhu..no...mayal...gia...

and they would jump in with 'Fibromyalgia' as if they were helping me along!! It was so painful to listen to me jumble the words that the whole message went down hill from there.

While this disease is a 'companion', so are all of you. TY

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5 of us named it over 10 years ago, Polywhosit and Giant thingy. So much easier :)

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🤣

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LOL!

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I am referring to the very excellent explanation PMRpro gives for our disease and symptoms! It helps me visualize it: the PMR 'chugging along in the background' ...... the 'prednisone mops up' the inflammation.

I am grateful for so many of the members here to help me wrap my head around it.

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I forgot I read that (duh). Excellent analogy.

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Dear Constance13, Although I understand respect your opinion, I believe we are all different and have to deal with (and come to grips) with our illness/illnesses in our own unique (and, for me, ever changing) way.

I do consider myself privileged to have met some of the people I've met on this site; and I have learned an incredible amount about both PMR and GCA, which is totally cool... but for me personally, I definitely don't consider either PMR /GCA my "friend," and if they are "companions," they are unwanted surly companions!

The best way for "me" to deal with having acquired these two unwanted companions is to rail against them with every fibre of my being, day and night! To curse them back to hell, from whence they came; back to the bowels of Satan himself!

I do have the odd moment, when I see, very clearly that these illnesses have opened up some alternative (positive) outlets/perspectives for me... i.e. my writing, my art, my in-depth introspective analysis... but I'd like to think, I would have gotten there by another way, had I not gotten PMR/GCA.

I'll keep PMR & GCA close to me... and I'll treat both with respect, but I will never turn my back on either and NEVER consider either my friend. ... and the "moaning" is just my in nature I think, so sorry, that may not stop.

As "Michael Corleone” said, “Keep your friends close, and your enemies closer.”

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"The best way for "me" to deal with having acquired these two unwanted companions is to rail against them with every fibre of my being, day and night! To curse them back to hell, from whence they came; back to the bowels of Satan himself!"

And in doing so you expend a great deal of energy - both physical and emotional - that you could maybe use better elsewhere.

I know you won't agree with me and yes, we are all different, but you may find at some point that acceptance turns into a great gift. I have had PMR for 14 years - had I railed against it all that time I would have missed out on a lot of wonderful experiences and become a very bitter person.

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Wow! Acceptance is a key to recovery. May we all be done someday.

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I know and I so agree:

I remembered how my Mother had suffered 21 years previously with the same GCA and we laughed and smiled.

"had I railed against it all that time I would have missed out on a lot of wonderful experiences and become a very bitter person".

Had 'I railed' that I would not have got off my backside and down something positive and met new friends and like minded people.

One of the many positive outcomes is 'this forum'.

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I think I said to you really early on that acceptance was a good thing. You replied you needed time to be angry, or words to that effect. There really is no point "kicking against the pricks" because one just hurts oneself. It is what it is. So turn your amazing creative energy outwards. We are all travellers on this remarkable planet and you know what? You've just been given a new experience, one you didn't want or expect, but which is already widening your perceptions and contributing to the store of wisdom and compassion that perhaps is part of all our lot to gather during this life.

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I think I’ve had my fare share of “acceptance” and my patience is wearing thin. But onward! Or is it CARRY ON!? (Something about the Queen - my memory escapes me.)

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I agree HeronHS, and I do feel privileged and blessed, that these diseases have gifted me the acquaintance of so many amazing people, opened up my creative self, and allowed me to see other (unique) perspectivtives.... but as far as befriending the beasts and feeling "privileged" to have them attacking me.... I'm not there yet.

....but I think I'm being way too serious as Constance13 has said it wasn't to be taken seriously. 🙂

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Oh I definitely haven't befriended the beasts! But I think we've come to an understanding, something better than a stand off anyway.

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Always.

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Hi Melissa

You probably wont be surprised that I general agree with PMRpro's comments about expending energy on stuff you can't easily control. I do realise however it is not a matter of 'choice' for you - this IS how you feel at present and acknowledging these angry and frustrated feelings offers another kind of 'engine' to drive you through a 'nightmare'.

But the metaphor of 'fighting' disease is inherently a worry I think and not one I like much - it is very masculinist and even reminiscent (to me anyway) of the worse aspects of competitive 'sports'. The notion you can win at all costs and if you 'try' hard enough 'you can do/be anything you want to be' all falls under that dark umbrella for me. It is quite 'individualistic' - the very idea that people have it 'in' them to 'defeat' physiological and biological processes which are utterly outside of theirs - or 'anyone's control seems quite 'unfair' to me and clearly quite irrational. We are all different yes - but I prefer other metaphors to get me through life (which is what is still happening as long as I am still here) which don't involve a struggle to the death. The way we conceptualise our own experiences of illness are drenched (often unconsciously) in such metaphors - and I am thinking now of Aids As A Metaphor by Susan Sontag - a review of which stated:

'Military metaphors particularly incense her. We say that the body mobilises

its immunological defences; that those who have not already succumbed are

under assault; and millions of others who harbour the invincible virus,

are vulnerable at any time to a final, all-out attack. As Sontag says: ‘This

is the language of political paranoia.’ By demonising the illness as an

alien enemy, we attribute fault to the patients, no matter if they are thought

of as victims.' (The fatal power of language / Review of ‘AIDS and its Metaphors’ by Susan Sontag, New Scientist, June 1989 By DICK KOVA)

I am not suggesting we can turn on or off the feelings of disappointment and or anger and frustration we all feel at times - but rather that being aware of the kinds of entrenched ideas which under-gird and encourage us to internalise such thinking are worth bearing in mind - especially if we want the 'best' possible embodied experiences we can have for what is left of the rest of our lives.

Best wishes

Rimmy

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Brilliant post!

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This post was not meant to be taken seriously, as I am sure you realized.

However, not to be insulting in any way, I can’t see the point of railing about this, admittedly, revolting illness (or anything, in fact), it just doesn't help (at least it certainly wouldn’t help ME). I have learnt over the last six years to accept it - PMR is so much better to have than the life threatening illnesses so many are coping with at the moment.

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Oh! Sorry... no I didn't realise. Guess, I'm just in a "serious," mood today. Sorry. No insult taken; I guess that's what makes the world go around... we're all different and entitled to our opinions.

"I'm not different for the sake of being different, only for the desperate sake of being myself. I can't join your gang: you'd think I was a phoney and I'd know it. ~Vivian Stanshall

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I took it seriously, in a tongue in cheek sort of way. Truth can sometimes best be expressed through humour.

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After12 and half years with GCA, and now Addison's, my companion can 'push off' now.Overstayed and not welcome.

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There are days when I feel like looking on the bright side - this isn't one of them! Sorry ...

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I know what you mean😏. Today it’s even got me.😡😂

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Thanks for your great PMR philosophy! I've had PMR for about 1-1/2 years. When I was first diagnosed, my first thoughts were to get rid of the disease and to taper off prednisone as quickly as possible. But now I've had to accept the fact that PMR isn't going away any time soon and I have to figure out how to live the best life I can with my little companion by my side. It's more relaxing to think this way instead of always wondering why I can't get rid of this disease and obsessing over prednisone tapering.

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Absolutely!

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Long ago I realized....

The things I do today are important...Because I am exchanging a day of my life for them.

Therefore, I have chosen to pick the "path of least resistance", and

honor the moments/days of my life with positive energy.

And when things suck!!, I refuse to let the rest of me get sucked down too!

So refocus...reframe...and reclaim my time...😁🙏🏽😁

Just sayin.......Jerri

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I think you should collect your "just sayins"

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Comes with being old enough to recognize what matters and what doesn't.

You and I know life is short, and sometimes ends without our permission...so best keep our t's crossed and i's dotted...and tell our loved ones we Love them, every day...and dont go to bed angry😊

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Exactly!

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