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.
“I’m as mad as hell, and I’m not gonna take this ... - PMRGCAuk
“I’m as mad as hell, and I’m not gonna take this anymore!”
100 Replies
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I'm sick of it too,don't know what else to say really.2years and 4months now,seeing GP tomorrow,could be a waste of time and parking charge!
Things that drive me mad: 1. So glad to see you are better, again. (HA! Make-up, the great concealer). 2. Thirty minutes after discussing how exhausted I feel so much of the time, that I felt the need to hire someone to come in and clean my house, etc. my friend said that she thought our group needed to have a party. (Which I usually gave.) I said, "That would be nice but someone else has to have it" (wondering if I could stay awake until at least 11:00) . Her reply: "Oh no, it has to be at your house, it's the party house." She was surprised at my "Are you (swear word) kidding me? look" (I don't think she listened very well.) 3. Picking up the phone to "How are you feeling?" OMG.. ask me anything else! Ask me what I had for dinner, how's my cat? what I'm wearing to work tomorrow? ...anything! But please, please, please don't put/keep me in that 'sick role'. I am so tired of the first thing people say is "How are you feeling?" I know they mean well, but it brings all of this to front and center and I'm tired of having it front and center. Because I have it front and center so much of the time. After all, I have to take that little Pred pill first thing in the morning as if I needed a reminder.
End of rant. OMG...I think I need a Valium. (I should probably delete this.)
Great blog, mamici1! I hear ya, sistah!
in reply to Insight329
Thank you Insight329! ...and, yes, I hear ya!
Miss "Oh no {party} has to be at your house," Needs a stern talking to!!!! I've been in a kick ass kinda mood, I volunteer to do it!!!! ; )
That was a GREAT rant from you... Good job!!!!!
When people ask me how I am,I just say 'I'm fine',it's so much easier because they don't 'get' it!
in reply to Sandradsn
We are our own worst enemies... maybe we need to start being better advocates?
Like the "Save the Tatas," people... nobody screws with them!
Hi Melissa, hope you feel better after getting that off your chest. We hear you loud and clear. It is a lousy disease, made worse by its invisibility. Keep on ranting. xx
Thank you for your courage to say it like it is!!! You are so right about the invisible aspect of this! I was just told yesterday how happy my friend was to see that I was “over my illness”. And to think that all it took was one good night of sleep(very rare these days), some makeup and wearing something other than my pjs. Rant away! You say the things many of us simply keep to ourselves. I’ve only just begun my time with this and I’m already worn down from it so those who’ve been so very long coping with it should be ranting and raving. Thankfully and of course,sadly, we have each other on this forum. I do hope you continue to speak up for us as well as yourself!
in reply to vnett
HA! “over my illness”
People just don't listen do they?
I tell people 3-5 years. I explain that Pred is "long term" and has devastating side effects and symptoms... My 40 year old daughter, who lives in the States, mentioned yesterday she'd cook something for me "in October." I said, "October? What's happening on October." She responded, "That's when you'll be at 20 and feel better." WTF?
Telian in reply to
Well at least you know now!
Keep on ranting .....
let’s get our own bracelets.... people seem to get it then!
Makes me mad when your doctor says you are over it just because your blood test came back ok..... that’s all they understand! The fact that you don’t have the energy even to get out of bed some days ...... about time doctors were forced to be educated .... all of them!!
That’s my rant !!
in reply to shella
YUP! Far too many people on this site have complained that their GPs and Rheumy's look at blood tests and conclude that the disease is gone or that their symptoms cant be PMR or GCA because the "results" don't support it! Seriously!
Good rant by the way...
My god! How many of your tiny store of spoons did that use up? Or did it put an extra spoon in your drawer? You do indeed speak for all of us mamici1. Especially those buried in the depth of their couch, cushions or their duvet, believing that no one cares or can ever understand, just what a superhuman struggle this can be at times.
Gosh! Imagine if you headed up a fundraiser. No one would dare not to give.
Dear Anonymous, She’s back and she’s mad and this is her firing off part of one broken cylinder, so beware!
in reply to SheffieldJane
Thank you. It is a privilege and an honour to speak for you, all of you. If my words capture the tiniest bit of what you are feeling, thinking, experiencing... than I am happy. Sometimes people just need an outlet; if I can act as a conduit for you (and maybe others) I have a purpose.
She is back! ; )
Telian in reply to
Whatever you're on can I have some too - I can't seem to string two words together sometimes...don't know how you do it - as hubby used to say - I'll have a pint of what he's on'. Just don't over do it!
in reply to Telian
45 mg of Prednisolone, with a large chaser of self pity, prolonged social interaction deprivation and a strong willed, rebellious character forged in 60's and 70's!
*laughing*
No worry about my over doing it... still sitting on my rather large backside, doing nothing but ranting!
Telian in reply to
You're on one of the many highs....take care
Back at you!!
Love, love, love the slogan! Autoimmune disorders: “Yes, even your body hates you!” I want it on a T-shirt!
in reply to TooSore
I know right!!!! Perfect!!!!! I cant take credit, but I don't know who to give the credit to, the name was deleted. : ( I found it last night deep in the internet... something like "If diseases had slogans."
They were all kind of funny... if not a bit rude. : 0
"ADHD... Oh look a squirrel."
"Dyslexia: ...or is it Lysdexia?"
"Dandruff, every day is a snow day!"
I'm adopting the slogan! Please keep ranting.
in reply to Ljm12345
I loved it too! Not mine though... Just don't know who to give credit to. : (
Thank you, I will!
I agree - keep ranting. It is awful and I am on 60mgs prednisone at present - simply horrible
in reply to Janicep
I remember 60... not nice at all, but 80 was way worse! It will get better! I never thought I'd see 45, but here I am !
Thank you. I will keep ranting, it keeps me young!
Thank you for venting !! I'm so with you. Fed up of friends saying you don't look ill and me having to cry off stuff as don't have the energy!! I've resorted to telling them to Google it now , one response was " well it doesn't last forever does it, you'll get over it!!" 2 years down the line, I scream quietly!!
Sending huge hugs to you mamici. X😉😉😉😃😃😃
in reply to York54
I hear your screams! I love the "Google it." ... trouble is, most wont! I'm more of a shove it in their face kind of gal! : )
Thankyou so much ❤️❤️❤️
in reply to Allsgrandso
You are most welcome.... my pleasure, believe me! I felt soooooo much better after I had finished it!
Thank you for that, Melissa. You have already been through such a lot. It was wonderful to read your spirited rant. I found myself reading it with tears running down my face, but it was the dratted "dry eyes."
in reply to Bj2016
Awe... for a minute I though I had touched a heart! ... but it was just a dry eye! Hahahaha
Thank you for reading!
Believe me, you touched my heart, but the tears touched my blouse, annoying because it's one I had actually ironed. That's what I call getting dressed up, these days, wearing something ironed.
I thought that was only me , I’m so much better at folding these days and don’t like to think of how much time I wasted ironing .
in reply to Bj2016
IRONED???? Are you nuts?
Jeans and a T shirt and bright red lipstick!
PS happy to have touched your heart! ; )
Yes love , I’m angry and when I can be ar#*~ some peeps will feel the wrath . Thanks xx
in reply to Chrob
Right on!!!!
PS love the picture, but you do realise that the clocks should be digital, apparently school kids nowadays can't tell the time otherwise!
in reply to Telian
I just read that!!!! How sad!!!! ...and they won't be able to write in cursive either! WTF?
Telian in reply to
The mind boggles!
TooSore in reply to
It's to save the parents - keep the digital clocks put away and you can send them to bed whenever you want as they won't know it's not bedtime and cursive becomes a secret code for the parents to communicate!
in reply to TooSore
Almost makes it sound fun to be the parent of small children... NOT!
TooSore in reply to
As much as they exhaust me, the preschoolers I teach have been my life line. They are so real and honest. They make me get up each morning to put one foot in front of the other. Of course I drag myself home and collapse but I don't have to bathe them and put them to bed.
in reply to TooSore
You teach? Children? Everyday? Willingly? GOD BLESS YOU!!!!!!
Wow! I don't know how you do it!!!! I get exhausted just talking to ad trying to entertain my grandson Max, on Facetime!
My daughter is a teacher and I see how knackered she is at he end of the day, and she's healthy!
Seriously, my hat is off to you, TooSore!
TooSore in reply to
Thank you - single mom of a teen headed to college, afraid if I stopped I'd never work again. I'm also quite stubborn and was determined that it wouldn't get the best of me. I have PMR so started at 15mg, I know I couldn't have done it with the higher doses needed for GCA. And probably most importantly I have a fantastic team of ladies who understood that while many of the physical aspects of the job were behind me I still have the knowledge base needed for the ones with disabilities. They just stepped up and did much more than expected. I (and my kids) have been blessed.
in reply to TooSore
That is fabulous! I sooooooo admire you! I guess I'm older (almost 64) and have both PMR and GCA... I have also had a bit of a rough time, with it all... but I so miss my job at the hospital and volunteering at the Hospice. I just have to be realistic and if going to Waitrose kills me... how would I work 2-3 days a week and volunteer at the hospice?????
I don't know where you find the energy, Melissa, but thank you for speaking for us all!
This week I received an email from a friend in the US (sorry!) asking if I would like her to share the information she's found about treatments for fibromyalgia! I sent her some links to learned papers that I've bookmarked from this forum.......! No reply so far.
in reply to Rugger
... as for my "energy," levels, last night was the FIRST time in 5 days that I felt well enough to even think about "ranting," whilst still laying on the couch!
I think I see he light at the end of THIS PARTICULAR tunnel... infections clearing up, thrush meds finished, I have rested until I cant rest anymore... the end may be nigh.
Rugger in reply to
A good end, I hope? No more pictures of guns and ropes!
It's good to hear - I do worry about you and hope you get a little calm after all these recent storms, to use another metaphor. x
in reply to Rugger
Ahhhh Thanks Rugger! No need to worry... I'm a Drama Queen, that's all ! Too vain to off myself... I would worry about the mess they'd find!!! Gun? Too messy. Ropes? Oh no, can you imagine what my face and neck would look like??? Poison, now that is viable option, but aren't I already taking 40mg of poison every day already?
Hahahahahahahahaha... Fibro... PMR.. GCA... whatever!
No worries, I'm sure if you get some fresh air and exercise, you'll feel much better! I mean look at Lady GaGa!
Gosh I don't want 80mgs - I have no energy for anything at present - keep ranting
in reply to Janicep
80 was a nightmare! I was hanging from the ceiling by my fingernails!
I can't imagine - 60 still hasn't completely controlled pain but much better than last week. Grrr I hate it - take care
Melissa
Thank you for having the courage to say what all the rest of us only think, but try to be polite in our postings. I read your blog and had a laugh. I don't laugh much these days and rely on your and Marks' postings to keep me sane. Though I'm not sure you're succeeding! I do wonder about my sanity most of the time continually talking to myself and Janet (her anniversary today), still missing her like crazy. Only two years since she went away but I shall hit the next person who says you'll soon find someone new. Whilst I have life-time Klinefelters Syndrome making any form of social contact is practically impossible.
I'm signing off before I start crying again.
Best wishes
Colin
Anniversaries can be really hard. You see the date approaching on the calendar, start preparing yourself, and yet when it arrives it hits you like a ton of bricks.
I talk to passed loved ones, too. I even answer them. Example: my mom whispering to me ‘ Don’t you think it’s time to dust, missy? (a pet name she called me when I wasn’t in the dog house for something); me: not yet mom, maybe in a couple of days.
I had a friend, Eric, who I went to the movies every Saturday with for many years. We’d take turns picking what to see and whoever picked had to pay. That way if it was a terrible film, the other person wasn’t out anything but time. Our film choices were so different. He liked Disney (can’t tell you how many times we were the only adults there without kids) and action movies; I like rom-coms and foreign films. There’s a film out now that I KNOW he would have LOVED and one that I would have pleaded for anything else. Its a movie thats supposed to scare the willies out of you. I HATE SCARY MOVIES. However, I’m an inch away from going because I keep hearing him say ‘GO’
Two years is like yesterday when you’ve lost someone that you loved for 40+ years. You should have a good cry — and a conversation.
So sorry for your loss.
in reply to Insight329
Beautiful.
Insight329 in reply to
Thank you. I lost four people that i was very close to in the span of 6 years. Those anniversaries are tricky.
in reply to GCA1947
Ohhhh Colin! I know this is a terribly difficult time for you... Anniversaries suck! They dredge up emotions that we unrealistically though might be gone. Please be gentle with yourself... Remember , sanity is not al it's cracked up to be! ...so don't worry about whether you are sane or not. The mere fact that you count on Mark and I to keep you sane, proves you are not... just like the rest of us!!!! Be kind to yourself over the next few days and actively remember Janet. Her laugh, her smile... maybe something funny like her sneeze! : ) It's okay to cry, just don't linger in those spaces for too long. Be well my friend, be well.
“Mad Hatter: Am I going mad?
Alice: Yes, you're mad, bonkers, off the top of your head...but...I'll tell you a secret.
All the best people are.”
~ Lewis Carroll,
Alice's Adventures in Wonderland & Through the Looking-Glass
karools16 in reply to
mamici1, I have always thought that...that the best people are bonkers. Makes them interesting. Glad I'm 1 of them!
Colin, I talk to myself all the time. No, I don't think it's to do with sanity...just thinking aloud. Even in the supermarket, I test my memory, without looking at shopping list, and go round, saying; tomatoes, tomatoes, tomatoes, until I find them. Couldn't care who thinks what. Bumped into a lady, recently, doing the same, and we had a good laugh.Nothing wrong in crying. You lost a dear one. Warm wishes.
Many thanks for the rant, I laughed too but so true. Was at the hospital yesterday for a gastroscopy none of the nurses had ever heard of GCA, they have now! Just the short version designed to induce panic next time they hear it.
As to why I needed a gastroscopy I suddenly became anemic, it will be the pred making holes in your stomach they said (just blame the pred) no it isn’t said the nurse, normal all the way down she said. Back to the drawing board. ☹️
in reply to CT-5012
Thank you, thanks so much!
I love it... "designed to induce panic!" Hahahahahahahahaha
Hope the anemia gets sorted!
Thank you so much for articulating what we feel and wish we could say. I particularly like the part 'the worst thing you can do to a person with an invisible illness is to make them feel like they need to prove how sick they are.' I was told yesterday well you look alright to me. I try to make an effort to take a pride in how I look but it backfires with comments like that and makes me feel worse!
There are too many things that you have said that I would like to respond to but I do not have the energy to type them but just a BIG THANK YOU. Valerie
in reply to Sorop
Thank you... and yes, please save your energy! I appreciate you reading the blog and sending me that message!
... you look great by the way! : []
Dear Melissa
Eloquently 'angry' - a really decent 'rant' and spot on as usual. And anything to do with a 'revolution' usually appeals to me - as long as it is about education and ways of thinking and 'bloodless' !! It will probably take one though for AI diseases to get the kind of attention they should despite the fact they are rapidly increasing almost everywhere.
Also I don't think you should call your blog rantings of a 'mad' woman - but a 'sane' one - you may not BE 'well' but your brain is working better than most.
Rimmy
XX
Hehehehehehe. Thank you, my friend. It will be bloodless as I'm not a big fan of the red goo!!!!! *feeling faint at the thought*
The AI numbers are staggering! Although tough to nail down globally.
I am definitely Mad as a Hatter! Any semblance of sanity, is simply a silly!
Spot on again Mamici1, I've only been 'blessed' with membership of this group for a very short while but it is already my first read every morning. And I always look forward to your contribution because you tell it how it is -for you, but also for those of us who are a little bit less eloquent and less able to put in words what we really feel!
Those who are shocked or offended are maybe having an easier ride? Or are a bit too 'British' and the old upper lip is fixed rigid, or any number of things...but the point is, it's YOUR journey, YOUR blog, YOUR opinion....YOUR right!
I too love the slogan, my t-shirt is a large please (sadly getter larger!)
xx
Hahahahaha. Thank you angiek! I appreciate your support and you lovely words of encouragement! I hope nobody is too shocked or put off by my use of "four-letter-words." I find it hard to express myself without them... and yu said it perfectly!
my journey, my blog, my opinion.... my right!
MY obligation!
xxx
You've said right well just what we think and feel.
But I want to point out to you that anyone who has enough energy to be this pi**ed is surely getting better (even if you don't think so right now).
in reply to GOOD_GRIEF
OH I AM! What a difference a week makes... last Thursday I had two undiagnosed infections raging through my body, and hadn't had the allergic reaction to the bacterial infection med yet! I had just had my knee drained and a cortisone shot. For the last 5 days I felt like death warmed over... I turned a corner yesterday afternoon. I knew I had because I took NO NAP! No 90 minute nap! Recovery is on it's way!!!!!! Also last night I stayed up till like 11:30!!!!!!! Just like a grown up!
GOOD_GRIEF in reply to
I keep repeating myself but I'm reminding you...
We get better...
in reply to GOOD_GRIEF
Hi Good_Grief, Yes we do.. I believe you! But I appreciate I am only 5 months in and the road ahead of me is long, and winding. And who knows I could, "Go for a Burton," at anytime during this crazy journey! What a waste that would be... to not see it to the end!!!!!
My pattern seems to be, I take two steps forward and three steps back, two steps forward and three steps back. I'm ok with that I guess... it's just when I'm stepping back I have to be able to rant and feel sorry for myself. I'm not great at suffering alone, silence. I don't have that amazing British resolve.
GOOD_GRIEF in reply to
I know how you feel.
I'm not belittling your feelings- or my own for that matter. I get really ticked off when I can't do something like get on the floor to cuddle my dog, climb on my honey's lap and give him a cuddle, get down in the dirt to plant my new garden, bend over and retrieve my cast iron grilling pan to make dinner, reach up and get my mixer and cake pans to bake a birthday cake, drive myself to the salon to get my haircut, have to go to the salon to get a mani-pedi cause I can't do that for myself either now, get into my absolutely favorite leather jacket because the pred belly is too big today...and a thousand other personal and impersonal insults from PMR every day and every week and every month and on into year two...
I'm just reminding you...and myself...
We Get Better.
Good Grief, Do you have a spy camera in my house because you've just described my life perfectly?!?. 😉
I think we're all pretty much in the same boat.
Or as my mum used to say "up the creek without a paddle" 🤤 the thought of trying to use paddles.
in reply to Hollyseden
The thought of paddling... killer.
in reply to
Melissa. We call that dance THE HOKEY POKEY. Unfortunately having to throw your arms up in the air at each repetition & singing. AHHH The Hokey Pokey. AHHHHH The Hokey Pokey. AAAHHHHHHHHHH The Hokey Pokey. Well I thought funny! ATB
in reply to
🤣🤣🤣🤣🤣🤣.
It seems like I'm always "turning myself around.,"
Exactly my sentiments.....especially when my shoulders and arms hurt and I cannot do anything ---- fatigued and tired of explaining WHY they hurt.
Why yes, of course 4840, Your arms cant hurt for no reason! What did you do to yourself? Did you pull a muscle? How can you be soooo tired, you haven't done anything??? Fatigued? From what? You don't work anymore... and all you do is sleep!
They may not say it, but that's what I hear! ; )
What a wonderful lady to describe as she does. You deserve a medal or perhaps a special bracelet that we could all design together. Come on folks on here. Let's come up with an idea. She has helped me to even now to appeal to DSA with also my Doctor's help. I am trying to be up and running although I have my sleep, naps and bad moods. Night all. Xx
in reply to morrison
Hahahahahahaha, Thanks Morrison! Seriously... just knowing I have all of you, lifting, supporting and appreciating my RANTs is really ALL I need! Cheers! Good luck with DSA!!!! Knock em dead!
Just posted this on her rant!
BEST RANT EVER!!!! Go you!! I read your very words to my brother tonight and I think he is starting (finally) to get it. Would you believe my mother still denies I have an auto immune disease and thinks I’m exaggerating. I used to be a good ranter but my brain will no longer handle complex ideas and arguments and that is one of the most frustrating things for me. I consider myself more fortunate than most. I have a lease of energy at night and can teach singing as there seem to be a whole host of good chemicals given to me when I teach and when I teach singing. While the pred might from time to time deal with the mobility and pain it cannot and does not deal with my lack of focus and the wall of fatigue I experience during the day. Things take sooo much longer.
Here’s another strange thing. My creativity over setting musical numbers is much more intuitive. So that part has got better. Perhaps PMR is switching off my monkey brain and letting the unconscious creativity through.
I’ve never been so inactive having been a professional singer and performer. So not only do I have the frustration of not being able to “shake ma shammy” like I used to, my bloated appearance does not put me in poll position for jobs. With public performance image is everything…. I’ve lost that and that is truly shit. I can’t believe it’s me I’m looking at in the mirror. A wee skinny face lost in a matronly chin roll. That’s shit.
We have a PMR GCA charity here in Scotland I want to do a big American Big Band Gig to raise funds for them. But I’m worried that organisationally I might get tired. I should think about help. I also know some people in the filming industry so I have fantasies about writing great adverts…you know like the ones for asking for money for Cancer research. I have it in my head and I even have the strap lines. So wish I could get some financial support to do this.
Any other creatives out there??? Let’s not take it any more ..let’s make it much more.
You shake that tree wummin ranter!!
What I forgot to say was...I need to write a letter to my GP to kick her ass and I can't even get a sensible argument on the go as my brain has totally lost the plot. I wish I had a ghost writer. Lol!! Missed opportunity but I just don't have the same analytical and argument constructing skills I had last year ffs!
in reply to Singr
I LOVE THIS!!!!! Thank you! Good on your brother, sorry about your Mum... sometimes we Mums can be in denial about our kids! : (
YES! PMR (or the steroids) have switched off the "monkey brain," letting the unconscious creativity through!!! Do you remember my MONSTER!!!! My muse! She inspires me!
Hey, why don't you start a "Go Fund Me" or "Just Giving," page? You never know, it might take off and you could run with your idea!!!! You could always get help to plan and organise the event... but it would help you get the ££££.
I'll be your ghost writer!!!!! Shoot me some relevant, factual data and a bit about what you want to rant about and I'll write it up! I do it al the time for my kids and friends in US.
Yup I also have lost the ability to concentrate. Read things over and over but can't remember what 5 mins later. If you do ever organise that fund raiser, get some t-shirts printed off with that 'even my body hates me' logo that would be a great seller, as long as they had them in big enough sizes. 😉 and ps I'll have a couple of tickets too
Love this rant. We should all share it to our friends and family. Explains it so much better than I ever could. Thank you
in reply to Hollyseden
You are most welcome. It was my pleasure! ; )
Absolutely brilliant (as always) please keep writing ✍️ I connect with your words soo well
in reply to Monkeymate
Wow! Thank you for reading and for your kind words and support!
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