Those that can't do... RANT!
rantingsofamadwomanblog.com...
Warning; This blog post may contain some strong language. If you are easily offended by expletives, perhaps you want to think twice before clicking on the link above. There are but one or two in this particular post.
Yes,
Well said Mamici1, as you said, the post got a lot interest and that's why I wondered whether there was a method in the madness of it.
I know it sort of back fired but it got posters posting their views which is what this forum is all about.
Nice to read your blogs again.
Hi Primarosa, There may have very well been a "method in the madness," in which case, "BRAVO!" It got me off my arse and writing again, so... : )
For which, many of us will be thankful for!!
Yes keep on writing mamici1 many many of us love your stuff. Ignore the negativity. Treat it with the contempt it deserves.
*laughing* Thank you Hollyseden!
Quite agree!
Cheers Longtimer, I know you are trying to live life to the fullest!!!!!!
Yes..."trying" is the word....birthday tomorrow, so out with family today for lunch...have had rough 3 days, but bit easier today...and the sun is out!......onwards and upwards for us all....cheers....
OHHHH WOW! HAPPY BIRTHDAY!!!!!!! Oh the sun came out just for your birthday celebration, how wonderful!!!! Enjoy the day!!! xxxxx
Thank you xx
Happy Birthday! I hope you are the centre of all the attention.......just wallow in it xx
I`ll certainly try! thank you xx
Happy birthday Longtimer 🎂
Thank you..xx
In the thread in question someone actually asked the person posting how they felt, and it occurred to me that perhaps the poster wasn't feeling so great and needed a lift. I felt guilty for not having that reaction in the first place. Because, if you feel really well and energetic, you probably aren't going to be hanging around here looking for a boost, and then feeling down because the place at that particular moment seems to be full of sick people sharing their bad experiences.
Thank you HeronNS, What a great perspective! That could very well be the case, I guess we just don't know. I'd be surprised if the writer came here looking for a "boost." I say that only because this is the last place I'd come to be uplifted! : ) *laughing* I know everyone is different, but I personally come here pretty much knowing there will be many people, in a lot worse shape than I am (at that moment). Reading their stories; maybe commenting with a kind, empathetic word or making a suggestion is what gets me "out of me" and actually BOOSTS me up! ...but, we're all different. I read this writer's earlier posts (to try and get an idea of where s/he was coming from) and found this; "... I am not a moaner normally and get fed up with people who do..." Maybe indicative of something, maybe not. I am not judging or saying the opinion was not valid, it absolutely is. I just don't agree with it. ...but it "boosted," me out of myself and out of my self pity far enough to write a blog post, so BRAVO!!!!!
Yes, I agree that was the sentence that jumped out at me of the post...so when are we moaning I ask myself...we ask advice and say what`s happening to us....then see if what we are doing is right.....and so on...….is that moaning.??...
It's not to me, but than again, I'm one of los miserables!
No it isn't.
Kind of what I was thinking
Yep, I’m with you all the way.
Absolutely
I will only take this advice from people old enough to be my mum. This poster is in her 90th year. I cheered up - cmon! Xx
Hi Jane, Cheers for your comment! YES, and God Bless her!!!!! I hope I am as vocal and articulate when I am in my 90's!!! She uses a computer for goodness sake! Good on her. The opinion and advice were valid, but perhaps not appreciated by a lot of people (including me) who are really struggling and finding it hard to simply "cheer up," and "live life," at the moment. To me, and I can only speak for myself, it felt like salt in a wound. Sorry to come off as such a b _ _ _ h. : (
Well the blog can be for all the people who say “ but you look so well” “you ought to get out more” “ It’s those steroids you know”.
“ I’ve got arthritis and I find that if I.........etc
I have had, “ my mother had that but she wouldn’t take steroids”. Implication being that I am weak for doing so.
I am so stiff this morning, it’s a bit worrying. (Me)
*laughing*
I hope that stiffness wears off soon... xxx
Are you laughing at my suffering? ( tongue firmly in cheek).
I will need lifting off the train at this rate. Aren’t British trains treacherous with huge gaps and the height?
No.... no!!! I was laughing at the funny things people say to us!!! *laughing*
I will lift you off/out of the train.... if need be! Although, who's going to help me walk to your platform to collect you, is another story all together! If you see an old woman being pushed in a wheelchair, by a young, strong, handsome man... that's me coming to collect you! Ask someone to push you out the door and we'll catch you!
🤣 I lifted a tiny elderly lady on to the high step of a substitute bus for a train recently. I just knew that health and safety would make such a palaver. We both pretended nothing had happened. 😉
Jane darling I am on my way to carry you to wherever you need to go. I am full of spinach and good will. I am also a maniac with a vile face due to pred reduction so you may prefer to flee when you see me coming. Oh dear. I am a hopeless case. But I would help you if i could. xxx
No self hurting allowed here, it’s the rules. Vile face indeed, noodle.
They certainly are. I did a 10 day trip visiting friends in July.
Dorset, Sussex and Surrey. The worst station was Bristol Temple Mead. The gap was more of a chasm. Passengers waiting to get on took my case, was helped down by young man behind me. Thank goodness, but we shouldn’t have to rely on kindness of others. No station staff around.
I did complain at the station, plenty of time as connection was missed.
I received an email from one of the rail networks asking for my opinion on my recent travel. Told them it was a serious hazard, children or small people, not me!!!, could fall through the gap. Passengers should be warned they will need to be fit, with very long legs, or proficient at long jump if wanting to get on or off at this station. No station easy but this is the worst I have come across.
Upside, this country still has a lot of kind people willing to help (or thought only way to get on or off train by removing the obstacle). No no kind .....
I hope you lot post a picture of you all together at the conference! And Tedski if he's there lol
Yes, Jane, I have an acquaintance who claims she ‘has pmr but will NEVER take steroids’. I do question wether she does have it because I know that I would not be able to move at all without them, even though I detest taking the b....y things. How naive I was at the beginning (4 years ago). A couple of years tapering and it will be gone. IF ONLY!!
If she's in her 90th decade - she must be 900! No wonder she doesn't suffer fools gladly. Fab post mamici - great to see you back!
Thanks MamaBeagle, Yes, GOOD ON HER/HIM... She "she doesn't suffer fools gladly."
Well spotted MamaBeagle, it should be 9th or she is a phenomenon!
I would ask her..........but not sure if I dare!
You first, I am right behind you 😁
Hi Melissa
I missed the 'Cheer up' post altogether - probably I had 'brain fog' under a blanket somewhere - although I think i am 'sometimes' slightly grateful for this lack of 'clarity' when it's all becoming too much.
A GP I don't normally (have to) see recently told me that I was 'too absorbed' in my illness and I felt utterly furious - after all he had NO idea what it was like .... My partner recently said 'you know this IS a very serious illness because it is SO pervasive' - it affects every part of our being - mind, body and 'soul' - so that certain aspects seem to be amplified at certain points. It's like - well almost - conducting an orchestra with symptoms and expressions of harmony and discord changing constantly while we are juggling the timing of the milligrams of whatever we are taking in a mixture of careful collusion or contradiction. The bottom line is it's not hard to feel lost and out of control at times - because - let's face it - we often are !
Like you I don't respond well to the 'buck up' philosophy but I try to recognise that this somebody probably means well and thinks such freely offered 'recommendations' might even 'help' me ! But of course they aren't having my experience and just don't or can't understand what it is like to be embedded in that - this is also not their 'fault' - just their own - naturally (like mine) - circumscribed experience.
Because I am fortunate enough to have a supportive partner managing household matters and any pressing 'stuff' - for me 'living' is currently just finding anything on a particular day to distract in (hopefully) an interesting or engaging way - as joining the bigger dots will have to wait for later - I just hope that means that when I can do that I will be in 'remission' and that this phase will be 'over' - but I suspect there will then be other elements to hinder any 'jolliness'. Strangely I am not really 'depressed' but think I should be !?
Thinking of you
Rimmy
X
Wow, Rimmy, I too would have been FURIOUS at the GP! ...because, unless you've walked in my shoes, "...shut the hell up!" And Ruth is right, of course it is "a very serious illness," and totally "pervasive." Not to mention that the people effected, usually have a multitude of different and diverse symptoms, side effects, etc. One size does not fit all!! My GCA & PMR is not your GCA and/or PMR! I am quite sure there was no malice intended and the writer's goal was to simply point out her recent observation and hopefully get "us" lot to CHEER UP and realise there was a life out there, to be lived!!!! ...but it didn't cheer me up (as it did SheffieldJane) it made me feel worse (and what that says about me, I really do need to analyse!). It felt like a little bit of salt being poured into an already open wound. Maybe it was my inability to "cheer up," and "live life," (live my perception of what LIFE should be) that I was objecting to, and not her post? Thank you for your well thought out, profound response! xxxx
I am sorry for being insensitive to your suffering Melissa. My first reaction was that we were being subtly trolled, as happens from time to time, as we know. The best way to respond to those posts is to ignore them. Then I realised who it was and cheered up. I go ga ga for the next generation up ( all they’ve been through, the war etc. there’s a kind of stoicism that I admire). Sending you a hug and hope it will be a real one next Saturday, if we are up to it. Xx
Don't be silly, my friend... you have never been insensitive to me or anyone, that I have seen!!!!! You have a keen perspective and a great sense of humour! It would take a lot more than that for me to be hurt/offended! And if you are ever anything but totally honest with me, I will be offended!!!! And yes I understand, the writer has perhaps earned a bit more leeway than I offered... but as I said it is where my head was at the moment. Thank you... Yes, I am hoping to shake these physical, mental and emotions "chains" by Saturday!!!!! Hugs in person! : )
Whew! You have a real skill in expressing emotions in the moment and providing cathartic relief for others. You must have been quite a handful as a small girl, I expect you still are. 😇
Me? A handful? I can't imagine..... you'd have to ask my OH. 🤣🤣🤣
Melissa and Jane. I do hope you are well enough to make the meeting. I’ve been longing to meet you both in person and have a proper hug instead of sending a virtual one. 🌸🌸
Looking forward to seeing you too Suet3942. 🌼
I’m Sue, Jane.
Good, your other name makes me hungry. Jam roly poly mmmmm!
Haha. Yum!
Wild horses could not keep me away.... now a bad GCA/PMR day could but I will not let that happen!!!! : )
Beautifully put Rimmy. Your wisdom is strong and well!
Rimmy, this is a brilliant description of how this disease affects us. I keep feeling that I should by now and at such a low pred dose be completely back to normal but I'm not and maybe the old me is gone forever (just as well maybe!).
Oh Rimmy if anyone says anything like that to you I will be over there with my pred temper. How dare they. You are a lovely person and I am very cross to hear you have been insulted like that xxx
Thanks so much Daisychain for your support !! He was not my regular GP (thank heavens) but one of those old fashioned (even if my junior in years) 'authoritarian' doctors who could not credit that a mature woman like me could be well informed or even vaguely 'intelligent'. It almost made me laugh except I was so annoyed - whereas my usual doctor is so smart, kind and respectful and always listens to everything I say - so I'll just make sure I never get that particular rat bag again - ha ha !!
XXX
I hope you stick to that and NEVER see him again. He is the one missing out on an interesting case where he could make such a difference. …..and cross him off your Xmas card list (lol). X
Hahahahahaha!
OH yes Rimmy I know the type! So opinionated and arrogant! It is so hard to know how to manage that type. I really really hope you never see him again darling. Xxxxxx
Thanks for posting that Melissa,she did make my blood boil after reading the post.Its like we're all enjoying this flipping illness!!.
😎I'm away for the weekend living life to the full( at the seaside eating a lot and enjoying the view and sea air) I know how to party😂😚
Good on you Sandradsn!!!! Party down!!!!! ...let that blood simmer down!!! ; )
Well said ,some are more fragile than others and with people who commiserate by saying oh yes I have a bad knee ect at home and work which makes you feel patronised . They are glad to have some one to talk to who does understand .We give and get on this site and the info is more valuable than the professionals give because it is given by people who want to help each other ,not sadly, sometimes bored practitioners .There are good doctors too but I find these conditions have to be experienced to be believed really .Itys a strange one. Take the advice or not ,take the frustration and vent it ,there are always people here who have experienced the similar and that creates understanding .Take whatever you can from here and then move on .Don't judge . We are all different and all wanting a listening ear sometimes .You know what there are times when we write cheerful things and messages of encouragement too .Its a mixed bag and I for one appreciate that its stopped me from feeling I must be a hero all the time . Even let the rant in question make you sit up and take notice Yes indeed ! but it was too much I think . Have a good day all . Well said mamici.Long may we be as we are .
Hi patriciawhite, Thank you for your response. You said it all, "...we give and get on this site." You take what you need and you leave the rest. If you feel you have something to offer, you give it freely. If it's taken, great; if it's not, no harm, no foul! I am sure the writer was offering some valid advise, it's just that some of us were not in a position, or right frame of mind to accept and appreciate it. So be it.
🎤🎧🎼🎹🎷🎸🎻 music to my ears. Contented sigh. There was something missing from my life. After a s**t night sleep I wake, I read, I am replete. thanks M1 x
*laughing* Firstly, I am sorry you had a s**t night! I hope tonight will be better!!!!!
Thank you. As always, it is good to know my rant resonated with you. Yes, it took that post to get a "rise" out of me and prompt my big butt, off the couch and onto the laptop! What does that say about me???? I'm still asking myself that question. : o
Bit harsh that mamici1 - maybe your mother had a point ......................
Thank you for your comment borednow, and I agree... my mother (especially retrospectively) always had a good point! ...and perhaps it came off as a bit harsh, but that is where my head was at, at the time. Just my writing reflecting my honest, authentic and true thoughts/feelings... just as the writer of that post was being true to his/her genuine, honest thoughts/feelings. Please know it was never my intent to be judgemental, hurtful or harsh, I was just expressing my opinion.
And long may you do so Mamici............
Tonight I will indulge in amitriptyline! Sometimes I rest so much I wonder if my muscles are atrophying due to my lethargy.....but not today - yoga at 5! As we all know PMR pretty much dictates our destiny - there are good days and there are bad. Have a good one! X
You too Pongo 13! Yoga at 5:00 GOOD ON YOU!!!!! Yup, my aim is to get to the grocery store today! "Oooooo, exciting," I hear you say! : )
Haha love your perspective. Gonna use that line next time I go and see my snotty little besom of a GP. “If you’ve not got anything to say...” lol.
I’m not feeling charitable about the post YET. I’m still wanting to punch the daylights out of them. But that says more about me and where I am right now.
I was interested to ask about the creepie crawlies running about your body. I’m struggling to explain to GP about the rushing and pins n needles with heat going on especially at night. It is overwhelming and takes my breath tolerance and stamena away. Is that the blood having hard time getting to muscles?? Tell me more about yours?
Thanks Singr. Yup, my Mom had a million of them.... bless her! I will private message you about "creepy crawlers," in a bit. xx
First let me say I believe everyone has a right to there opinions and this is mine...Some people need a place to express how they're feeling about their illness, particularly if they're not fortunate enough to have close family or friends who are willing to listen and where better than a forum of people who can, at least in part , have some understanding and empathy. We have a choice wether we read them or not don't we.?..Thanks for your rants mamici , I always enjoy them...Di
Hi Melissa, I for one love your rants. You express what many of us are feeling but don't say. As for that phrase 'only say something nice or nothing at all' how boring would life be if that were the case. We'd never speak the truth, never explode that this damn condition hides in our bodies, making us look 'normal'. It's an unwelcome lodger who never pays rent. But we'll kick that lodger out one day, including you. Enjoy your meeting. Oh and keep ranting! x
Ha! I love that, "It's an unwelcome lodger who never pays rent." That is perfect!!!
And thank you for reading and responding to my rants, I appreciate the support!
I love a rant and ‘expressive’ language always adds to the conviction of the piece. Beautifully written: thank-you🤬🤯😤
I didn't see the post but it would not have gone down well with me especially now. I cannot handle the "jolly little campers let's all be cheery deary" when I am feeling like crap. I get it that some people want to be like that but they are risking a bit of a reaction when so many of us are fighting so damn hard to keep our heads above water. I am sick and tired of fighting every single day to manage this. I dont need someone to tell me I am too absorbed. Yes. When you feel you are fighting every inch of every minute of every day you can tend to get a bit absorbed in it. GRRRRR.
I am convinced that when we post on here for whatever reason we all know we "get it" …..where else would we ask, advise or rant otherwise....well, that`s my opinion for what it`s worth...
I love your rants. They always keep me from feeling like I’m the only one who has these thoughts. Keep it up!!!
Awe... thank you!!!! I appreciate your support and kind words! xxx
Should have known better
PMR AND GCA POSTS ONLY 
If we don't laugh, we'll cry.... 
