Those that can't do... RANT!
She May Be a Monster, but She’s My Monster - PMRGCAuk
She May Be a Monster, but She’s My Monster
49 Replies
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This, like your others, is a wonderful essay. Wow. and I love the photo.
in reply to yogabonnie
YES!!!!
The photo CALLED to me!!!!
It portrays exactly what I feel we both look and feel like!
...and THANK YOU!!!! : )
I would definitely keep her around for her creativity- from little seeds. 🌱
in reply to
Melissa 0
Monster 1
I'm always saying..."I don't feel like me anymore ".😳🙄
in reply to Sandradsn
...that's because your "monster" has invaded parts of your very essence and is trying to take over! : o
Sandradsn in reply to
Am sitting waiting for my GP appointment at surgery now,husband said tell her how you really feel😂yeah ok,bless him! Will she tell me to reduce pred I wonder!! Feel bleugh today ,foggy and dazed!!
in reply to Sandradsn
Oh bless... good luck! I hear ya sista, I feel like that everyday! 😕
in reply to Sandradsn
What did the doctor say?????????
Sandradsn in reply to
She said its the inflammation in my body causing me to feel so rotten.She doesn't want me to reduce the Pred for a couple of months.She also said that 40-50% of PMR patients have the illness for between 3-4yrs on average( my previous dr claimed its 2 yrs and stop taking Pred)....
in reply to Sandradsn
Hmmmmm. Bummer. I believe I may be in the same boat... I go to Rheumy next week to get a better understanding of why I feel so rotten all the time. : (
I'm sorry it wasn't better news for you, but at least there's a plan to keep you on a the same dosage and try to fight the inflammation! Fingers crossed!
Hang in there... this too shall pass. xxx
Sandradsn in reply to
This new GP at least had a clue about Pmr which I found quite encouraging! She was helpful and removed doubts that I was going mad!! ,I hope you get some answers next week.xx
in reply to Sandradsn
Oh that's good!!! "Helpful and removed doubts," I like it!!! Thanks... I'll let you know.
Name her and give her love. If she knows you aren’t going to evict her, she might mellow out. But she’s probably going to continue to be a bit precocious. She is, perhaps, your ‘inner child on Pred’ that’s been waiting to come out. .
in reply to Insight329
Hi Insight! I too thought she might need a name, but then it hit me that she should perhaps be known as; She-Who-Shan't-Be-Named!
I don't see her mellowing out, but from your mouth to God's ears!
She's my inner something alright... she feels more like my inner, angry, adolescent, evil, twin sister! xxx
All very true, thanks for the rant, expresses what so many of us feel. I think of mine as a Gorilla, who, until the last few days, I have managed to get to sit in the corner, grumbling a bit, but in the last few days he has been getting bolder and banging his chest. I am very much hoping either security or immigration going out from Luton or when arriving in Tenerife, will perhaps put him in quarantine! But I think he might sneak on the plane with me next Tuesday, or hide in the wheelchair I have had to borrow.
Bridget
in reply to
Thanks Bridget1001! It's good to knew that my rantings, resonate with others! Hmmmm? I hope you're right! I hope "security or immigration" do scare him into hiding (or quarantine). However, if he does tag along (as I'm sure he'd miss you terribly if you went away without him) make sure he gets plenty of rest and bananas! ... but not after midnight! xxx
Suet3942 in reply to
Mine stayed at the airport last week . Was feeling very chilled out in Tenerife despite inclement weather, then my poor husband was taken ill and has been in hospital with pneumonia. Goodbye tranquility and hello worry, stress, trying to sort out insurance with very unhelpful gp receptionist in uk and backwards and forwards to hospital ( once, through torrential rain and flooding). He was discharged yesterday and we are due to fly home on Friday if the airport is open at Stanstead. Think we need another holiday!! Hang on in there. We will get through this horrible illness . Just wish we could see the light at the end of the proverbial tunnel.
Defined the Monster but not captured it. Super blog. You write the battle so well. All's well that ends well! KRO. ATB.
in reply to
Thank you Pepperdoggie! I'm not sure she can be captured! Damn, I'm not sure she's REAL!
If I don't "write the battle," I will surely just become another, faceless, nameless casualty. And yes... all is well that end's well! xx
I’ve been feeling sad today and after reading this blog, I went back and read your other blogs with tears of recognition coursing down my face. You unblocked a dam for me and let me feel less alone with your gifted writing. For that I thank you from the bottom of my heart. I admire your courage and openness and wonder how my experiences of love, life and death have locked me up and yours have allowed you to be so open?
You are an amazing soul .🌟
in reply to SheffieldJane
Oh my goodness, SheffieldJane, Thank you, thank you so very much for the exceptionally beautiful, if not somewhat, bittersweet words. On the one hand, I want to apologise for making you sad and making you cry; but on the other hand, I feel its a good thing that you were able to get in touch with those feelings, as apparently they needed to come out! Who knows why similar, pleasant or painful life experiences, shape and sculpt us all so differently? What you call "courage, openness, and wonder," I just sort of feel as an internal "prickle" that needs to come out and be acknowledged. Oddly, that piece started out, yesterday, with a totally different subject, name and photo! Go figure! I hope the "tears of recognition coursing down your face" (which was a magnificent sentence by the way!!!! ) have provided cathartic release for you. I appreciate your support and feel honoured that my rantings have moved you as they have. Best compliment ever! Thank you. xxx
Yes her writing is so inspiring.
I keep telling myself that you don’t die from PMR but it feels like it with all the side affects I’ve been dealing with lately. Blood clot in neck or is it a mass from having Breast Cancer 2 times? This is my b......hing for the day. Keep writing mamici1. It helps to know I’m not alone with these strange feeling you put in words that I can’t seem to fine maryanne
in reply to MaryA_
MaryA_, You are definitely not alone! You have a whole community of loving, caring, empathetic people here to support you!!! And if you feel like bitching, I will be here to listen!! I'm happy if my rantings make you realise (if just a tiny bit) that your not alone and please know your feelings are anything but strange! Hang in there and know I am sending positive thoughts! xxx
Hi Melissa - you never disappoint - a wonderful piece of writing !! I cannot help but think if you were going to have an illness which say required this medication - you may have 'picked' the 'right' one. Yes - obviously I know it would be better NOT to have any illness at all - but this bright-eyed wee 'monster' has certainly drawn something out of you that would otherwise have never had an incarnation - albeit with an ambiguous 'welcome'.
Because you have had to sit at a pretty high dose of steroids for so long your experiences have an amplification which many of us have only temporarily had - an expression of your psyche - which was clearly already essentially very 'creative' and never just cooly 'analytical' - (I have always thought that any drug is only 'expressed' as an interaction - in the context of the person who is 'already there' - biologically and psychologically). So when we read about your experiences we are all very fortunate to briefly share with you something of your unique 'self' while also recognising aspects of our own 'selves' - something many writers are never talented enough to express.
One day I am sure you will re-read this blog and even 'miss' this dynamic wee creature - who like all 'children' demands everything ...
Thanks Melissa - we are all very lucky to have you 'here'
Rimmy
Oh Rimmy, Thank you for reading and responding! I was so excited for you to read it! I just knew you'd get it... get HER!!!! Your continued support and perceptive insights are, as usual, right on the money!
These illnesses (and the treatment) are PERFECT for me! The illnesses have sloooowed me way down, to almost a standstill, which is something I have NEVER been able to do. And "slowing down," has been the most important part of the process!!! Who knew?
And the steroids (especially at such high doses) have definitely "amplified" a very specific bit (if not scary bit!) of my psyche, that I had not previously tapped into!
I cannot tell you how much it means to me, when you (and others) tell me that my rantings speak to something inside of you/them. It is such a privilege for me to know that my narratives are even (the tiniest bit) representative of another human being's experiences, thoughts, and feelings... what an honour.
I think it is I who is lucky to have all of you!!!!!
Thank you, Melissa xxxx
PS - One day... perhaps these blog essays will come together as a book; and they will tell the story (and maybe a bit of yours) of my PMR/GCA journey and what I discovered along the way. ...and yes, I will miss her, but she will have centre stage; I see her on the book cover! : )
Rimmy in reply to
Yes a book !! - and it will be a fantastic one - the first few chapters already are ...
XX
in reply to Rimmy
❤️❤️❤️❤️
Suet3942 in reply to
I’d buy it Mellisa!!
Morning Melissa!
I so enjoyed reading about your monster! I hope she is behaving today?!
I also enjoyed reading all the comments! I wish I was as erudite!
My monster seems to take a slightly different form, maybe due to a lower dose?
She is definitely a more exaggerated version of myself...
... in the supermarket she steers me down the aisle with the clothes & makes me buy things that I definitely don't need, but will be lovely in the Summer, then takes me down the aisle with candles & other unnecessarys (but very pretty) then I go to the checkout & find I only have a few bits of essential food & supplies, but I have plenty of chocolates, biscuits, yoghurts, flowers & magazines & of course wine 🙄 I definitely wouldn't let her go shopping on her own.
... my little monster is also a lot braver than me, when it comes to speaking her mind - I have had a few incidents recently, where I have been amazed at what is actually coming out of my mouth!!! The stories are too long & complicated (and possibly boring) to tell... maybe if I try to précis them?!
... she is also very untidy & disorganised (I'm just using her as a scapegoat now?)
Staying in today & looking at the very beautiful snow scene...
Ooh, might do some online shopping? I could do with some more clothes to pile on the bedding box...
I can relate to all of this....my sister has said to me often, that I am more direct on steroids (that`s being polite).......I thought it was age......my husband doesn't get away with a thing!...methinks that`s why he keeps saying you have to lower and get of those steroids!......
in reply to Longtimer
Okay... that made me laugh too! All I could hear was this poor man, in a low, almost whisper of a voice saying (half under his breath), " Yeah, ummmm... maybe we should look into getting you off or at least lowering your steroids...." "What do you think Honey?"
Hahahahahahahahahaha.
Good observation, Longtimer , maybe we should have a Poor Partner Corner where we tell funny but horrible stories about what our partners have had to contend with!!! : )
in reply to NWFiona
Oooooo NWFiona, Your post made me laugh out loud! Thank you! I see many similarities in our monsters! It may be my formidable steroid dosage that makes "She that shan't be named," act out more aggressively, but she too loves a bit of unnecessary in-store and on-line shopping, and boy, does she have a mouth on her!!! God forbid you bump (literally) into me on the street, or if I hold a door open for you and you do not say , "Thank you." She will be all over you, like tie dye on a hippie! I get embarrassed, just listening! Unlike your monster however, mine has OCD! She is a NEAT FREAK! Her motto is, "There's a place for everything and everything in it's place!" If she makes me turns the tins around, so that the label is facing the front of the cabinet one more time, I'll scream! And don't get me started on the how many times a week the bathmats should be washed! *sigh*
Love her and treasure her... at least she buys you chocolates, biscuits, yoghurt, flowers, magazines & WINE!!!! : )
My goodness! your 'rantings' are so creative! Thanks for putting into words what us lesser mortals find so hard to express!
in reply to stellafmdm
Thanks stellafmdm, but I'm telling you it's her, not me!
I am so happy that my rantings resonate with you. To me, that is the best compliment ever!
Cheers!
Your posts always brighten my day. You have an extraordinary talent for capturing the very essence of living with this condition - and because of your humour, no matter how dark the subject matter, it always cheers me up.
The monster in the photo looks so cute, it made me want to give mine a stroke - perhaps if it gets some TLC it might calm down?
Kathryn
in reply to katie-w53
Thank you katie-w53!! Your comment has brightened my day! It's always god to hear that someone out there "gets you!"
Yes, that photo GRABBED me... I knew that was the one! The woman looks so tired, fed up and bedraggled... and you know it's the monster's fault, but just look at her; you can't help but feel sorry for her and want to give her that hug!
Cheers.
Thinking about monsters, I've realised that mine is quite different to yours (although I can completely relate to your post). It isn't hyperactive and doesn't run around creating havoc. Mine is a big heavy sloth that hangs around my neck the whole time, weighing me down and slowing me down. I'm going to see if I can persuade it to go up a tree - I'm sure it would be happier there!
in reply to katie-w53
HA! That's funny katie-w53, because I get like that, but she doesn't! I turn into the "sloth" and all the while she's in the background saying, "Let's go!" "We need to vacuum," "Lets walk into town!" "Can we change the sheets?"
I sit on the couch and respond, " OH GOD, JUST SHUT UP AND LEAVE ME ALONE!"
Rod Hughes would agree with you Melissa 
When I jokingly remarked that Pred seemed to have brought out latent OCD he replied quite seriously that a known side effect was that Pred could amplify inherent psychological traits. He reckoned that I'd always had a tendency to OCD but slight enough so as I wasn't aware.
So the question could be: Were all these monster traits that i'm having - OCD, arguing convinced i'm right, even more intolerant, etc. etc., squashed in childhood? Could I have been a totally different person? Then what would my monster have found
in reply to Merly
Hi Merly ( I love how you chose your name!) I saw Dr Hughes! Thought he was brilliant!!!!
That is really intriguing! I had not heard that about Pred... but it makes sense to me! All my (sorry HER!) little niggly bad habits, annoyances and idiosyncrasies seem to be amplified!
Wow! Looks like you have some soul searching to do!!!!! And if they were "squashed," by what were they squashed and why????
I have always had had OCD tendencies, a big mouth and a healthy ego... Pred just make these lovely qualities more... shall we say magical! : )
Oh, no! That's quite scary!!! 😄
Oh no, sorry, didn't mean it to be scary, I just think it's really interesting. Having a Victorian style, authoritarian father who had 3 daughers and not the wanted son, I grew up unable to say Boo to a goose. It seems that maybe your pred monster strips away some of the socially learned niceties
Hi Merly,
How are you?
You didn't scare me too much, haha!
It is very interesting - I am very similar in that I wouldn't say boo to a goose either, but now seem very capable of saying exactly what I think!!! It is usually when something unfair is involved, not just random events, thank goodness! 😊
Always enjoy reading your blogs Melissa. Would be great if you put them into a book- I'm sure you won't run out of material and I'd certainly buy it. I have GCA and PMR but have never been on such a high dose as you. Have got a monster though who decided to pay for Christmas lunch for all the family and take them all on holiday last year!! On a lower dose my more usual restrained self has come into play! I think sometimes the family enjoyed the higher dose although I could see that my " tell it as it is" stance and "black and white" type of attitude had them a bit worried at times!! I'm sure we can all relate to your monster although she can be a different size/ shape/ colour for all of us!
in reply to Jackoh
Ahhhhhh, thank you for your support!
Yes, I'm finding the idea, of a book that chronicles my PMR/GCA journey intriguing!
I have been observing that my moods, feelings and thoughts change as frequently as the weather! I'm sure they are affected in part by the Pred, but maybe it's more than that... I just think it would be fascinating to be able to look back see progression or back-slides... and if I am even a tiny bit representative of the masses, maybe it would give newly diagnosed people a glimpse into the future, making it less scary! We'll see.
Thanks again!
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