How to Lose Friends and Disengage People - PMRGCAuk

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How to Lose Friends and Disengage People

104 Replies

Those that can't do... RANT!

rantingsofamadwomanblog.com...

Warning; This blog post contains strong language. If you are offended by expletives, please think twice before clicking on the link!

Cheers.

104 Replies

Friends or People who masquerade as Friends when your the one who plans everything & does the driving etc very quickly fall by the wayside.

PMR? What’s That? Never heard of it! You look well though!.......

Then go get yourself a diagnosis of Breast Cancer, then you’ll see the Cream Rise to the Top!

I never received a Card or a Flower when diagnosed with PMR but BC & the house was like a Florists, the Postman thought it was Christmas with all the Cards!

But then again, it was the real friends who showed themselves what they were made of!

It’s not easy being stuck with PMR & having to Retire early but people just don’t get it!

I don’t go out without my makeup, of course I’m going to look well, it costs a fortune to look this good, especially as l needed more foundation to cover my increasing facial area!

I have a friend who once said to me ‘l really admire you going out, looking like you do!’ That was at 20mg of Pred! Nice!

But we can do it, we have each other on here, people who really understand & have been there, done that & got the T-Shirt!

Right, off to pack another box! 📦

Enjoy The Sunshine 🌞

And, Keep Ranting 😉

in reply to

We do have each other here on this site... indeed!

I must ask, was it really a FRIEND who said, "l really admire you going out, looking like you do!" Hahahahahahahaha!

Oh my!

I will keep ranting, thank you!!!!

in reply to

I’m afraid it was a friend! The other truly awful thing she said to me in a very off hand manner when l told her l had breast cancer was ~ ‘it’s not like you’re going to die, is it!’ Renders you speechless to be honest! ☹️

PMRpro profile image
PMRproAmbassador in reply to

A former friend I assume?

in reply to PMRpro

On the back burner! 😏

in reply to PMRpro

Hahahahahahahahahaha!

in reply to

OH MY GOODNESS! This friend is not good at filtering, is she?

Suet3942 profile image
Suet3942 in reply to

Aaaah Melissa. If I lived nearer to you I’d come and give you a hug. I know how you feel but at the risk of sounding like a broken record, the fatigue etc will dissipate and gradually you WILL feel more like your old self again. It won’t happen overnight but believe me, it will happen. I was lucky in the fact that my best friend was there for me but I do say “I’m fine thanks” when asked because I feel like I’m boring people. As you have said, it doesn’t help that most people have never heard of pmr or gca. As my gp said. It’s a silent illness because most of us look healthy. Keep strong. 😘😘

in reply to Suet3942

Thank you Suet3942... thank you.

As I have said, my RANTS are fleeting... As my words hit the 'paper,' the sentiment is dissipating... The rant helps to purge the "yucky" feeling from deep inside and then it's gone. ...but thank you for the virtual hug! I felt it!!!! xxx

SheffieldJane profile image
SheffieldJane

It is not only you that has become isolated and sometimes lonely. With me I know there is an element of choice. A reconfiguring of my role in a friendship. If I have always been the shoulder to cry on, I am reluctant to let that go and become the cryer. If you have always been the mover, the shaker, the entertainer then it’s hard to let someone else be that.

There is a kind of arrogance in pushing people away. I keep telling myself that when I am better I will pick up the threads. There is a kind of grace in allowing a friend to become the strong one while you falter.

Certainly some people are energy stealers, I avoid them like the plague. I am just not very good at being needy, it actually starts up cross impatient feelings, in me.

So much of friendship can be about doing things for and with people, that is impossible to keep up with now.

My most intimate friends are scattered across the globe now. One is doing badly with all consuming issues, so she can’t hear me anymore. Two more have died.

Well, we’ve got each other on here and that feels just great and if I am honest, enough for now. If these feelings get urgent then we’ll do something about it, won’t we? It starts with a smile. 😀

in reply to SheffieldJane

How beautifully said...

I blame no one, but myself, as I have let the ball drop... I too have always been the "mover, the shaker, the entertainer, the shoulder... " I don't know how to play the other parts.

...but it does indeed start with a smile and maybe a smidge of grace.

I'm so sorry about your friends that have ended their life's journey... that is a tough one.

Jean56 profile image
Jean56

Oh yes, it resonates. You write so well, again finding the words to another of the problems we’re all going through with this blasted disease. I’ve never been a great party person preferring smaller quieter gatherings. I spent 34 years working with the great British public. When I had down time I was inclined to hibernate or holiday in remote parts of Scotland! Having said that I’m not reclusive and enjoy company in small manageable doses. Now though I can’t cope with even that and find myself turning invitations down, especially if they involve evening events and driving. Friends say must meet up, how about lunch. Well if they don’t organise it’s doubtful I will find the energy. My very close friends have been great others as you say glaze over, don’t really want the gritty truth. They also risk, or would do if I had enough strength, serious injury when they say, but you look and sound well, as though your making it up and taking steroids for fun. You keep ranting, it does us all good, thank you!

in reply to Jean56

Oh thank goodness.... thank you, thank you so much!

I will keep keep ranting as long as I am able to speak some of your truth as well!

in reply to Jean56

Yes, I’m a Lady Who Lunches now too because otherwise I’d fall asleep or not go!

Chrob profile image
Chrob in reply to

Already having to build myself up for unavoidable evening do 23 June .

in reply to Chrob

Oooooooo, I hate when there's something planned for the future and you're already dreading it! : (

in reply to

Me too! I do love a mid afternoon lunch... like at 3-4. I have a glass of wine and pretend I'm having a lovely dinner out with Hubby! ...back on the couch by 6:00 and all's right with the world! How pathetic, huh? *laughing*

Leilagirl profile image
Leilagirl

I’m listening and get it. New to this but feel it. It’s a lonely diagnosis.. but on the lighter side.. if we are lucky enough for it not to progress further ..wonderful. If not and everybody is different with their own complications.. let’s continue to be the best .. compassionate., crazy.. (speaking for myself here.). Rant driven....PMRs supporters , to each other around! All the best my friends!

in reply to Leilagirl

Hooray!

Thank you for getting me... and yes, I agree 100%. Yes let's continue to be the most compassionate, crazy, rant driven, PMR/GCA supporters to each other!

Suet3942 profile image
Suet3942 in reply to

Thank God for this site!!!

in reply to Suet3942

Agreed!

SheffieldJane profile image
SheffieldJane

I am in!!

in reply to SheffieldJane

I am happy.

Please keep ranting! It is so true!

in reply to

I'll keep ranting if you keep reading! : )

karools16 profile image
karools16

Yes, mamici. Friends/others will ask HOW you are, but not wait for your reply. 'how are you karools, isn't the weather good?' I had coffee with 2 friends, yesterday, and we spoke about people asking how you are, but not waiting for your reply. They simply do not want to LISTEN. In my 12 years of GCA, I can't think of any friend, definitely no family, ever trying to find out what it is I am going through. Even with a 3 stone weight gain in 3 weeks,weren't interested enough to know how/why.Doesn't bother me any more.

in reply to karools16

Hi karools16, It's sad isn't it, though... I think people in general don't take then time to listen anymore. Everyone is more focused on what they want to "say." They give you that space to talk , but they've moved on in their head.

I agree, even my family seems to have comfortably removed themselves from my illness and it's symptoms... always good to keep a safe distance away, God forbid Mom opens up about it!

Yikes!

: o

Suet3942 profile image
Suet3942 in reply to

Mine too Melissa. The only person who does ask is my cousin cos she’s got it too. I’ve stopped talking about it to my daughters cos I don’t want to sound like a pathetic old crone so now they do not even ask how I am... hope they don’t end up with it.

in reply to Suet3942

Ooooo, bless your cousin!

How old are your daughters.. mine are 40 & 35 and they rarely ask as well. Boggles my mind.

BonnyQuine profile image
BonnyQuine in reply to

What a relief to know it's not just me. My boys are 45, 43 and 38. One of them does ask occasionally, but the others hardly ever do. So focused on being 'positive' - guess they don't want to spoil it? Boggles me too!

in reply to BonnyQuine

My youngest daughter's husband (my son-in-law!!!!!) asks every time he hears us on Facetime... Amazing!

Yeah, I don't think it's because my girls are focused on being positive... : (

Suet3942 profile image
Suet3942 in reply to

They are 45 and 43. Bless ‘em. X

in reply to Suet3942

Hmmmm, almost the same age... Are they wrapped up in their own lives? Mine are.

Suet3942 profile image
Suet3942 in reply to

Yes they are. I’ve got one in Kent and the youngest a couple of miles away from me in Essex. Unfortunately they are both single parents so they are extremely busy. My youngest is a teacher and anyone who says teachers have an easy time of it should spend a week in a school with the little darlings lol.

in reply to Suet3942

Funny my youngest lived in Kent (Dover) until about a year ago, and then they moved up to Manchester. Her husband is in Med School there. She is a teacher as well!!! Ahhhh yes, the stories I hear!!!!

My oldest is still in the States, Florida, with two of my 3 grandchildren. The third is up in Manchester, he is the youngest, 15 months.

Suet3942 profile image
Suet3942 in reply to

Wonderful to be a grandmother. Mine have a boy each.15 and 12. They’re good kids.

BonnyQuine profile image
BonnyQuine in reply to

They probably are wrapped up in their own lives. I am struck by what long hours they all work. Not much time left over for R&R and families. Not at all what we envisaged in the 60s.

SheffieldSonia profile image
SheffieldSonia

Rant on Melissa. I read your rants and shout yes, yes, yes.

My OH who has dementia knows I am not my usual self and suggests I see a Physio????

My sister who has Parkinsons Dementia told me yesterday that I had better cut down on those Steroids as I was getting a moon shaped face???

You just have to laugh don't you.!

in reply to SheffieldSonia

Thank you! Thank you!

"...cut down on the steroids," F**k me!!!!! That was harsh... I never had a sister, but perhaps I am happy I didn't!

You just have to laugh, or you will surely cry.

4840 profile image
4840 in reply to

I have one and it is painful to listen to her advice about steroids......I could easily do without this member of my family who knows everything better.

in reply to 4840

HA! That made me laugh... My daughter is coming to England to visit me (uninvited) in October, because I will {supposedly} be down to 20 mg by then, and because Rheumy said I should be feeling like "myself" at 20 mg or below, she has decided I will be fit as a fiddle, and she 's coming over on holiday!!!! Hahahahahahahahahaha

4840 profile image
4840 in reply to

I hope this is not going to be an uncomfortable visit for you!

in reply to 4840

Ohhhh, it is!

SheffieldSonia profile image
SheffieldSonia in reply to

I am the eldest at 77yrs of six girls my youngest sister celebrating her 60th today. I don't think any of them really understand my condition. I have always been the fittest and the matriarch so they are struggling to get their heads around me being unwell.I use the broken record technique, a stuck needle, repeat, repeat, repeat. Eventually it gets through.

in reply to SheffieldSonia

Love it!!!!! ".... repeat, repeat, repeat! " Hahahahahahahaha!

York54 profile image
York54

Rant away....I empathise with you totally!! I told a couple of my friends to Google PMR as I too, was told repeatedly, you look well/ ok. One friend came back with, " oh well, it doesn't last forever does it!!" When they ask how are you I usually say " I'm ok" as I don't want to become defined by this blinking illness!!

in reply to York54

Yeah! I'm not alone!

HA! It's easy to see the silver lining when you're not being smothered by the rain clouds, huh?

I hear ya... I don't want to be "defined" by it either, but I am damn sure not going to try to lessen the devastation it wreaks on me just to make someone else feel more comfortable! Hell no! This is my truth and if they can't take it (or don't want to hear it), good riddance.

Hmmm, I'm apparently fired up today, huh? *laughing*

Paulamac77 profile image
Paulamac77

Sometimes my illness is the elephant in the room. I pretend I’m fine and my friends pretend they believe me. I listen to their woes and realise that actually, I sometimes cope with all the rotten things about my illness better than they are coping with their moans and groans about everyday life. Ooooh there’s nothing like feeling superior when all they’ve got to complain about is a broken fingernail!

Slap on the makeup Girls, hide your old photos (no-one needs those reminders lying around when you’re on Pred!) and if you need to stay in bed all day then do it but make sure you have refreshment to hand, comfy pyjamas and a good book. Who’s to judge what’s best for you other than yourself.

I’m lucky. I have real friends who understand, make allowances for my somewhat fragile state but still treat me as “normal” rather than as an invalid and don’t leave me out of anything. And they don’t complain when I back out of a social arrangement at the last minute.

PS. Next person to tell me I look well will probably get a slap in the face with a wet kipper despite the fact I secretly hope it’s true. Maybe there is life after this horrible illness.

Keep ranting and thank you all for being there.

in reply to Paulamac77

Yes, always an elephant in the room!

I like your friends.... they sound lovely! Keep them close.

Hahahahahaha! I agree... I don't mind at all being told I "look well," it's the implication that I must not "that" ill, if I look so well.

karools16 profile image
karools16 in reply to

Sometimes I say 'it's not my face that's ill'. Other times, I say'it's a good thing I don't look how I feel'.

Chrob profile image
Chrob in reply to

I decided I had a blue parrot, sometime he flys about squawking ,sometimes he sits on the perch and flaps his wings gently and one day the #*++”) is going to fly out the window . It will be slammed shut behind him pretty dam quick.

in reply to Chrob

Ohhhhhh, I love this story!!!! A beautiful blue parrot!!!! Much easier to get rid of than the freaking elephant!!!!

I think my imaginary disruptive, wild, animal must be a squawking monkey!!!! Always chattering at me, yet I cant understand a word he says! The only rest I get is when he collapses into a ball of sleepy fur on the floor... but it never lasts long. In no time he's up swinging from the the window fixtures to the door jams to the top of the fridge! *sigh* Squawking, squawking, squawking.

karools16 profile image
karools16 in reply to Paulamac77

Don't forget to tell them' it's not my face that's ill!'

in reply to karools16

Love it!!!!

Janicep profile image
Janicep

I say my pain is 20/10 and I am awful. Very few are interested, even my close colleagues!!!!

in reply to Janicep

We're interested....

Janicep profile image
Janicep

I know but many "friends" just glaze over and then proceed to tell you their problems!!!

in reply to Janicep

Yes, they do... I find most people nowadays do that, not just friends of sick people...

I guess we can't blame our friends though, not too much... These are difficult diseases to understand. Like I said in the rant, most of us look like we’ve just become lazy and put on some extra weight! All we can do is try to educate them or show them grace and forgiveness...

And you know, WE will always listen to your problems!

Rimmy profile image
Rimmy

The BEST thing about this forum is the 'friends' we have made here that we never would have 'met' any other way. How we define a friend has had to change for almost all of us I'm sure as it is very difficult to explain the complexities of this illness when it is often 'invisible' in many ways. When I raised my first PMR symptoms with my GP as being 'fatigued' he replied : 'so am I - and so is every second person who walks through my door !!'. Using the generic term 'aches and pains' did nothing helpful either when I first was trying to figure out just what was wrong with me - and likewise when trying to explain to friends and family how i was feeling. Without the 'embodied' experiences of PMR/GCA many people will just not 'get it' even with four-part harmony renditions !!

Given that these conditions and their symptoms are also associated (often) with 'ageing' peers can think this kind of stuff is all really about that and more comfortably regard themselves as not 'getting there' as fast as you seem to be .... so they might prefer not to get too close - 'things' can be catching after all.

It's easy to be disappointed and critical - they should all know better - but we are not the 'same' as we were - and the friends that travel with us are in the end the ones probably worth keeping - or maybe as you also said somewhere Melissa we might resurrect some old friendships one day when things are in a different gear - either for them or us - and we will all be transformed by life again in the not too distant future.

Your 'friend'

Rimmy XX

in reply to Rimmy

Dearest Friend, You have hit the nail, smack, on it's head!

I would not have met YOU (and so many others) had I not been plagued with PMR/GCA and found this site! “Un mal pour un bien”

And again, I agree... WE are not the same. Ever morphing into new selves. I am not the same. ...and thank God for that! As I have grown (in just 5 months) in ways that I (in a million years) I could not have imagined!

I hold no grudges against friends who have distanced themselves... I willingly release them. Either our friendship will be resurrected one day.... or I will consider that I have traded their friendship for yours... or some new friend I have yet to meet!

It's all good.

Brilliant as usual Melissa. Always been sociable loner myself. I can scrub the sociable bit now! Bugger off I don't give a s---. It's the guilt that still gets me sometimes!

in reply to

Ahhhhh, You do make me laugh, Pepperdoggie! "Bugger off I don't give a s---!"

Hahahahahahahaha.

What guilt???????

in reply to

Guilt!! Must be a better word! It's the Sunday School training in the 50's! Should have been Mr Wonderful!(Fantasy). No murders here kid I'm innocent of whatever! Honest! No bodies buried apart from the pets. JUST get off my case!!!!!!

in reply to

Hahahahahahahaha! How wonderful.... now I'm actively looking for the bodies!!!!!

Oh... and by the way... I am all over YOUR case!!!!

in reply to

JUST watch yourself that's all! We have the best SQUIRREL defenders here! And we watched THE WIRE! KRO.

in reply to

“If I had a world of my own, everything would be nonsense. Nothing would be what it is, because everything would be what it isn't. And contrary wise, what is, it wouldn't be. And what it wouldn't be, it would. You see?”

~ Lewis Carroll, Alice's Adventures in Wonderland & Through the Looking-Glass

Janicep profile image
Janicep

Had lovely hair cut and colour today and feel good. Off for CT scan and vascular scan on Thursday and if feeling ok morning tea with friend who is quite a good listener but I will keep it simple anyway.

in reply to Janicep

Good for you! Feeling good about yourself and the way you look, always helps!!!! Good luck with scans!!!! ...and tea with a friend (who listens) is the PERFECT way to spend a Thursday morning!!!! See things are looking up already!!!!!

Seize the day Janicep!

SheffieldJane profile image
SheffieldJane in reply to Janicep

Good luck with the CT scan. The things we do ourselves up for these days! Dates with doctors. 👨‍⚕️

Janicep profile image
Janicep

Thanks - that will be me wiped out for the rest of the week and probably weekend though. Can't do much at all at all on 60mgs prednisone- oh well at least my hair looks good.

in reply to Janicep

Ohhhhh, I remember 60mg! I never thought I'd be at 45mg, but I am... and you will be too!!!!! xxx

Telian profile image
Telian

Keep 'em coming Mel...I hope you feel better now!.. :)

Like Janicep, I like to keep well scrubbed! I'm getting my eyebrows done today, a pedicure tomorrow, hair cut on Friday - WHY? ready to see my favourite TV chef this Saturday the delectable James Martin, love him...... and guess what I'm gonna look great (I think anyway) but I'll still feel shit! The palpitations are already revving up...

in reply to Telian

Hi Telian, I am better thank you!!! And YOU??????

My rants are my purging mechanism... once they are out, I feel soooooo much better!

Ohhhh, I am so excited for you! Are going to see him in person... Like at cooking someplace???? Or a restaurant? Or is he just coming round to yours? Hahahahahaha!

I have a mani/pedi booked for Thursday! Colour me happy!

...and yes, I'll keep em coming, if you keep ready! ; )

Telian profile image
Telian in reply to

Think I'll practice what we're preaching today - I'm fine thanks!

I thought you would feel better after your rant, still don't know how you do it but you do and good on yer! Make sure you keep 'em coming gal!

Yes will see him in person - again, this is an annual event, it's Essex Fine Food Show, he signs his latest book for me, we have a photo shoot!

My sister takes me - she just smiles and accepts I like him - my friends also but they tell me I love him mmmmm maybe if I were 30 years younger... plus he's a Yorkshire lad, so down to earth. It's because he reminds me of my husband when we were younger....

in reply to Telian

Hi Telian, I'm so happy to hear that you are well!!! That's great news!!!!! Keep up the good work!

Frankly, I don't know how I do it either? I just get possessed and all this yuck comes spewing out... Hahahahahahaha. : D

Oh, I just Googled him!!! I know him!! He's a cutie! Hmmmm, born in 1972. Not too bad...

Telian profile image
Telian in reply to

Ha Ha Ha - I'll try to...

Rosbud profile image
Rosbud in reply to Telian

I envy you , I love James Martin , if you get close enough give him A hug for me please x

Telian profile image
Telian in reply to Rosbud

Only too pleased to oblige!

Insight329 profile image
Insight329

I’m writing this before reading the comments, so if the message has already been shared, well this is a me too confirmation.

When getting my hair cut, my beautician whom I’ve known since she was a little girl and is one if my favorite people asked me “What’s new?” I racked my brain to come up with something that’s not related to these diseases. Brain: how about this? Mouth opens to let the thought out when I realized that it was something that happened here on the forum. Words pulled back and replaced with “Not much. You?”

But the moment gave me thought on how important this forum has become to me. As my social life has been minimalized, this community has stepped in to provide me with conversation, laughter, empathy, understanding, and a sense of belonging. Sounds like a form of friendship, doesn’t it?

Yep, our friendships will be tested with this. And I think I’m going to be tested, too, on how I handle my friendships It’s an adjustment both ways and I need to be a bit more mindful that it’s unchartered waters for them, too.

Ohhh.. sorry, this ended up a bit more like ‘personal journaling’.

Final thought: thank you all for becoming in a way an important social activity for me.

Guess I wasn’t done as came back to add to ‘How are you feeling?’ Besides being so tired of that question, I’m a bit afraid if it. Just how am I going to respond? The answer that brings relief to the asker, “My doctor says I’m doing really well, and I believe I am, too, considering..” or do I start to describe what I’m dealing with which has ended up with a regurgitation of the ugliness of these illnesses. (Green vomit from The Exorcist comes to mind.). And which ends up with me feeling guilty for sharing too much. That ‘How are you’ reminds me that I’m in that ‘sick-role’ and strikes fear in me at the same time.

in reply to Insight329

Oooooo, this "gem" will require more of a response than the time I have to write one... I'm off for a blood test and a knee ultrasound! How exciting, huh? I will respond upon my return! xxx

Marymon profile image
Marymon in reply to Insight329

You have said it all for me, friends, family, always end up feeling I wish I had said how I really feel, instead of putting on a brave face, why do we do it ??Except I did break down to a long time friend last week,kept saying sorry as I choked up. She said "come on I'm you friend" it was such a relief at the time, then wished I hadn't, as she has her own problems. They are away at the moment can't wait to tell her not to worry it's not that bad, !!! they can't win. Another has rheumatoid arthritis and she has suffered, since her twenties, now in 70's, although I hope I did, and do, give her enough support, but it is not until you are there yourself that it really hits home. Now she is giving it to me. By writing this I realise how lucky I am that I made such staunch friends over the years, as well as all you new ones out there, no need for a brave face here.

Xx to you all

Insight329 profile image
Insight329 in reply to Marymon

I bet your friend meant it when she said you need not worry for speaking about the struggle. I hope we get at least one, maybe two, regurgitations before we set their eyes glazing. .

Marymon profile image
Marymon in reply to Insight329

Yeah, we all know the pause and empty words before they move onto another subject. Just b****r them, we don't need it.

in reply to Marymon

That was a mini-rant Marymon!!! Yeah!!!! ...better out, than in!

in reply to Insight329

Perfectly insightful... I especially like the part where you said, "...and I think I’m going to be tested, too, on how I handle my friendships It’s an adjustment both ways and I need to be a bit more mindful that it’s unchartered waters for them, too. "

It's unchartered water for ALL of us!!!!!

xxx

BonnyQuine profile image
BonnyQuine

No need to worry that it's only you, mamici. I think most of us have experienced what you describe.

Must say, the best thing about this forum is being able to realise that we are not alone. Whatever our frustration or discomfort, we can say it out loud, and here are others who feel it too. It's v comforting.

in reply to BonnyQuine

Thank you. Yes... that is the best thing! There are so many who know EXACTLY what I'm talking about or what I'm feeling.

Jackoh profile image
Jackoh

As usual Melissa- late to join the party but agree with all you say. I find that I can be isolated with this condition but that sometimes I isolate myself. Sometimes I can't be bothered to go to something or make the effort. I do try my best to look my best each day as that helps me. I do try to do something each day unless I need a real rest day. But I do find now that very rarely do I plan lots of things. Friends agreed do not really understand at all and my reply to how are you? is nearly always" not too bad thank you" . It doesn't seem worth saying anymore really as I see the glazing over of the eyes. Family have been marvellous but perhaps like others I don't want to continually test their patience. So it's a different way of operating and readjusting but like others very grateful for this site and the fact that folk on here understand. Xx

in reply to Jackoh

You can join my party early, on time, late.... it's all fine with me! You are always welcome!

Yup, sometimes I isolate myself, sometimes I can't be bothered. I don't plan much of anything these days.. because if I do I end up cancelling anyway!!!! It's easier to do things on the fly when I'm feeling good.

With both friends and family I always feel that I am boring them to death... I don't have a lot (anything!) to talk about, other than this site, how I'm feeling, my feelings about being ill... I am totally BORING! I bore myself!

It's {this site} has been a godsend.... to be able to come here and rant, talk, joke, empathise... learn, is AMAZING!

karegodd profile image
karegodd

I loved reading your rant. You speak my truth as well and dare I say the truth of many on here. Purging and ranting is such a cathartic way of releasing the ugly icky sticky toxic emotional component of PMR/GCA. It’s like opening a pressure release valve- needs to be done regularly. What’s great about this forum is, people here GET it!

Hope the sun is shining on your shoulders today.

in reply to karegodd

Ohhhh, thank you! That makes me so happy! And yes, you describe it perfectly!!!!

"Purging and ranting is such a cathartic way of releasing the ugly icky sticky toxic emotional component of PMR/GCA, " it's the only thing that works for me!

My shoulders are light and loose with the warm sun beating down on them... I hope you are wrapped up warm in the sun as well!

JulianJ profile image
JulianJ

I think that true friends will stick with us, yes we can be a drag to be around, but they will stay. Those that drift away aren't true friends, they are hangers on for whatever reason, most likely their inability to build a true friendship.

I've started using "could be worse" in my response to "how are you?", not a lie, but also not the usual "fine, thanks"

We aren't fun to be around, it's hard work being nice!

I had to go out Sunday afternoon, only managed a 30 min nap before going out. Sat and chatted for a few hours, got home about 8 and slept for 2 hours woke and went to bed!

Wow what a fun life I have ;)

But, sometimes, it has to be done. Not looking forward to Saturday, people will want ME to be nice all day and I'll just want to sleep. Last year didn't seem so bad, but this year I just feel washed out.

Keep up the writing, the rants certainly cover a lot of how I feel and maybe we can get others to read and then more will understand how we feel

in reply to JulianJ

Hi JulianJ, I hear ya!!! Last week was a rough week for me; 3 out of 5 weekdays, I took a 3 hour nap in the afternoon and still went to bed before 10PM!!! Wild Child, huh?

I'm a firm believer in being true to yourself... You don't have to be "nice" if you're feelin it! Since these illnesses, I have learned to put myself first... at least I'm trying to do that.

I've spent my entire life taking care of others, and putting them first. Now, it's time to take care of me. If I don't feel "nice," or like being social... I just don't do it.

Maybe you can just "chillax" on Saturday instead of doing whatever it is you're dreading....

I'll keep writing if you keep reading!

Thank you for your support!

JulianJ profile image
JulianJ in reply to

My normal Saturday is to chill and sleep, but I can't this weekend, getting older day so will have to be nice for a few hours.

if the sun is out I may go for a spin in the car, fun with the roof down.

With luck people will arrive late and go early!

PMRpro profile image
PMRproAmbassador in reply to JulianJ

At least you get to celebrate getting older day. There is an alternative...

JulianJ profile image
JulianJ in reply to PMRpro

Good point :)

Not going to be many people so I can sit in the corner and pretend I'm worse than I am!

Won't really do that, but I think the drive out in the car may be good for me.

Anybody in South Wales want to squeeze into an MX5 for a laugh!

in reply to PMRpro

Good reminder! : )

in reply to JulianJ

Is it your birthday???? My "getting too old for this shite" day is the 11th! When is yours?????

JulianJ profile image
JulianJ in reply to

I'm on the 12th

in reply to JulianJ

Ahhhhh, FUN!

My very first "love" (boyfriend) Chucky Bizzarro was born in the same hospital as I was, one day after me on the 12th!!! We always said "it was fate, ) and we were meant "to be!" ...until of course he he cheated on me with my best friend!!!

Hahahahahahahaha!

Insight329 profile image
Insight329 in reply to

Omg, thst’s funny! And coincidental!

My sister and her husband were born 3 days apart, same hospital. (At that time they kept mom and baby in the hospital for a week.) He claims that she became infatuated with him when the nurses changed his diaper.

I had a boyfriend that broke up with me to date a friend. Forty years later, when my director was writing a schizophenia case for a standardized patient*, she asked me what we should name the case (patient) and out of my mouth popped his name. I laughed and thought, ‘Wow! where did that come from.’ Surprised me, but the ‘me at 15’ got a bit of revenge.

* standardized patient is an actor given a role to play opposite of a medical student. The student doesn’t know the diagnosis and has to figure it out through the interview. Gives the students practice before they get to real patients. (If you ever watched Seinfield, Kramer was a standardized patient with v.d.)

Best off without Chucky, Mel.

in reply to Insight329

I know right!!!!! Well God bless him... he's dead now. Died the year we both turned 40. I was shocked, but he lived a hard life. I was so better off without him.

That is hysterical about your sister being "infatuated" with him! Hahahahahah.

I think it's poetic justice that that his name just popped out at the need for schizophrenia case for a standardised patient! That was probably the last of the hurt coming out of that 15 year old!

Funny what life gives us...

Neverending63 profile image
Neverending63

I think the best comment I ever got was from my rheumy. A bit of boring background first so those of you that have already read this story feel free to scroll past. But then again you have to read it to know you have already read it lol.

I was seeing her for RD before being diagnosed with PMR and had lost 5 stone as my daughter was getting married and wanted to look a little better in the photos for her. This was not prompted by anyone else but me. In July I started the steroids then a new RD med and didn’t see rheumy for 5 months in which time the pred had taken its toll and I had regained 3 of the 5 stone I had lost. Her comment was ‘you have lost condition and need to exercise more’. I was so gobsmacked that I didn’t reply and just left her office when the consultation was over. It wasn’t until I got a copy of the letter to GP and read it again there that I realised that she knew a lot about RD but very little about PMR. I really felt like phoning her and say ‘ no shite Sherlock 🕵️‍♀️. So it isn’t just friends and relatives that can be thoughtless with their comments 🤷‍♀️

in reply to Neverending63

PERFECT, "....no shite Sherlock 🕵️‍♀️. " Hahahahahahaahahahahahaha

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