Those that cant do.... RANT!
rantingsofamadwomanblog.com...
Warning: WOW! It's a miracle, NO warning needed!
GREEN : Those that cant do.... RANT... - PMRGCAuk
GREEN
46 Replies
•
Oh Melissa. Fate has chosen a different path for you, me, all of us with PMR/GCA ,but it's a journey,not a destination.
Normality; I have found it changes along the way....SO WHAT!!!
I no longer think of how it was/IF only.............
You WILL cope the next 2.5 years, by taking 1 day at a time. I set myself up for many a disappointment, by saying' I'll be off the Pred by Xmas/Birthday/Easter' etc.
YOU, being Melissa,will remain 'relevant'... Wit/art/moving house/grandson et al.
Sure, weather is foul. Hot from Friday!
TOMORROW, YOU'LL BE IN THE PINK!!!!!!!!!!!!!!!!!!!!
Helen Keller;' We could never learn to be brave and patient, if there were only joy in the world'.
in reply to karools16
Thank you karools16. I love the quote... and how very true it is!
And yes, one day at a time...
I envy your originality and ability to honour how you feel. “ The water that has once been poured into the wine cannot be poured off again. But you can make a change with your final breath.” Bertol Brecht
in reply to SheffieldJane
The source of my rants is always fleeting.... here one minute gone the next. I think capturing them, before they slip away, you deny them, or worse, you try to justify them is the secret!
I told a friend yesterday, " I like to let my toes touch the very bottom, where all the muck is, so I know exactly how far up I need to go to reach the air!"
Yesterday was muck... today is air. : )
xxx
SheffieldJane in reply to
Wise lady. I have just confronted builder, landscapers who have been cutting stone slabs since 8 am just over my garden wall. They were quite sweet and have moved their operation so that it ruins the peace of a neighbour round the corner. 🤣 job done! All done with smiles and charm, the noise and dust is beyond belief!
in reply to SheffieldJane
Cunning! I like that in my friends!
O yes Melissa, me too! I went down the town this morning and amongst ordinary people doing ordinary things and far too soon ran out of puff with still a vast hill to climb to get home! arrived eventually and am absolutely shattered!!!!
in reply to stellafmdm
It can be very disheartening, huh? ...but we always rise above it!
stellafmdm in reply to
A bit of sunshine makes a lot of difference!!!
wish I was a witch and could put a friendly spell your way. Sadly just warm thoughts travelling your way instead. At least you could never be thought a wicked witch! Just the fun one we'd all probably like to meet one day and have a good laugh with.
in reply to Pongo13
Thank you Pongo13! I received your warm thoughts... Cheers!
I think we would have a good laugh! xxx
I get where you are coming from. What a life-changer these diseases are!
Until last Friday, my spirit felt like it had been run over by a Mack truck. I turned 63 recently, but felt 90.
What happened since Friday? Just a few things and nothing big. Spring finally arrived. Hello, Sun!!!! Amazon delivered my new portable speaker. (Somehow, I had lost my old one and thus I hadn't been listening to very much music.) On Saturday, I had the lunch date with a friend. Uncle Mark posted his Zen and the Art of Motorcycle Mtce. In his reply to me he posted that it seemed that my friend was in-tune to me and my feelings. That made me laugh as actually, I kept him talking about himself for those first 3.5 hours. (HE is soooo much more interesting than ME right now.) But no matter, those events have filled-up my gas tank (or at least I'm no longer on empty). Music, like books, has always been a mood changer for me.
So dear sweat Melissa, what people, places, and/or things are mood changers for you? You've found your voice in 'advocate writing'. Have you thought about righting fiction? poetry (ugh from me), a novel? Your art project was certainly a project that you seemed to enjoy -- and was good at. I loved her! Have you taken on any other projects? Is there someplace that you can go to sit in the sun and just watch the activity? You don't have to participate, but I find people watching is so entertaining. Do you sew? Knit? Is there a big, thick book that you always wanted to read, but hadn't attempted because you didn't have the time?
Think about what brought you pleasure in the past and how can you adjust it to fit your present. Could you go and sit with your Hospice patients? If not, could you write letters to them? Send cards?
I get the disappointment. And as I type 'disappointment' I realize that's a really weak word for all of this. The sacrifices we had and have to make are demoralizing and depressing. I decided with Uncle Mark's post that I'm going to give it one H*ll of a shot to find ways to bring those things that I loved in the past to my present. And you can, too. I think the present has some surprises for you. Look at your writing. Without becoming ill, you most likely would never have found this gift you have. And ohhhh, what a gift it is. You are a smart, interesting, kind, relevant!!!!, woman that has so much to offer. You may feel broken, but woman, you are not. So, put on your thinking hat. There's a vivid world out there awaiting for you to discover it. You just have to rethink how you go exploring. No more peddle to the metal. But remember, the journey is just as important as the arrival.
And all of your fans here can't wait for you to take us on that journey with you. I know it's going to be a ton of fun!
P.S. Do you play a musical instrument? If not, did you ever want to learn? Now might be a good time to try that.
in reply to Insight329
Dear Insight, I am so happy Spring, Mark and your music have turned you around! Sometimes it doesn't take much to lower our mood and thank goodness even less to elevate it!
Thank you for your "project" ideas!!!! *laughing* I actually have more than enough to keep me busy... but "ranting" is usually what draws me. I'll just be sitting here, and something will demand my attention and I'm off, like a possessed madwoman!
I was not feeling particularly down, or "green," yesterday when I started that rant... that's just what came out! (?) And currently my "Faces of PMR & GCA," Papier-mâché mask project is getting a lot of my attention!
You are 100% right!!!! Without becoming ill, I most likely would never have found my creative side... and for this I am most thankful!!!!
And thank you for the lovely compliments along with your caring spirit and on-going support!
xxxx
Insight329 in reply to
ted.com/talks/elizabeth_gil...
I think I shared this already. But I share it again because I love her and I love the examples she gives of creativity.
in reply to Insight329
LOVE THIS!
Wonderful suggestions for all of us really.(pity I have to work most days as I would like to take some of them up myself !!)
Thank you
Pity I don't follow my own lead. I've always wanted to learn how to play an instrument.
Today's graphic made me think of two of my favorite phrases.
The oldest, printed on a coffee mug: : "I have flying monkeys, and I know how to use them".
And a newer one, with the words printed on the handle of a witch's broom: "Of course I know how to drive a stick. Wanna see?"
Both were gifts from my staff, bless their hearts. They're in my office, most often used on condescending men.
in reply to GOOD_GRIEF
Hahahahahahaha! "I have flying monkeys, and I know how to use them". Oe of my favourites! Did you see you made it onto my blog... ; )
GOOD_GRIEF in reply to
I'm honored.
I deliberately included the trivial and the profound in your list of accomplishments because that is actually the portrait of normal. We just didn't use to have the time to notice.
in reply to GOOD_GRIEF
Yes, of course, I know you did (and I apologise) as I took a bit of "poetic license," with your suggestions to drive home a point that I was actually struggling to make! I realise I accomplish/achieve and awful lot... and much of what I am able to do is important... But the grass is always greener (no pun intended) and I want what others have...
Like Rimmy said, I need to "eat my peas and consider myself lucky... children are starving in other places!" She's right. ...and so are you!!!!
Many thanks for making see things as they are not how I perceive them.
GOOD_GRIEF in reply to
It's not that your perceptions are false. Yours are as true and as real as mine or anyone else's on this forum. We are all at different points on the PMR/GCA spectrum of experiences on any given day or at any given moment. I've been to some of the places you and others talk about, and I see the potential for going to places where others have been or are going.
Oh, and those scratches on the purple leather couch are important. They are the result of taking on something you weren't all that sure you could do at the time, represent a minimum of damage that was easily camoflagued, and will remind you to take some calculated risks even if the outcome isn't perfect. And you had a blast with dogs!
Hi Melissa
You echo again in your inimical way many of the frustrations we all have felt at times when looking 'out' at a world of people who seem to have 'everything' we have not - especially something you refer to as 'normal'.
By coincidence I am in the middle of a rather startling book called: 'Nothing to Envy: Love, Life and Death in North Korea' by Barbara Demick. it was published in 2010 and won some literary prizes at the time. The irony in the title 'nothing to envy' is certainly powerful in this book - suggesting as it does the double meaning that 'they' (North Korean people generally) have or live lives that are nothing to 'envy' from 'our' perspective at least - but are also hypothetically (due to the intense restriction of information about the world) then simultaneously 'free' from a negative emotion or feeling that they are missing out on something(s). It is a shocking account of almost medieval poverty, repression, control, cruelty and lack of opportunity in almost every area of life - Orwellian and utterly dreadful to read about. Told through the experiences of several individuals it personalises what would otherwise be a blur in demographic form - which of course makes it a much more readable if tragic book.
I am thinking then that having 'something' to 'envy' may or may not then be a bad thing - we need to have desires and aspirations to propel us - to incentivise us in some ways. For some - material things do the trick (tricky as that is) and given a context of possibility 'they' can get on and obtain at least some of those things they decide they want or 'need'. Others who experience less aspiration or material 'envy' at least - might on the other hand be quite happy not to follow these kinds of enculturated pathways - and do things alternatively or 'their' way - live off the grid or work less and have 'less' in material form at least. But all this depends on a context of 'choice' - and some always seem to have 'more' than others. No matter what anyone says for example almost everywhere women (generally) have less of this than men (for all the well known socio-economic- gender biased 'reasons'). Then there are other multifarious factors, family of origin, geographic location, health services provision and personal health, etc etc etc which will always somehow limit what we can and can't do - despite the positive manifestation of 'envy' as say aspiration.
Well I'm sure I am just stating the obvious here BUT my point is HAVING something to 'envy' is not necessarily a bad thing - and even less so if the possibility of obtaining what we envy is somehow at some point attainable. This doesn't mean we wont feel frustration and disappointment along the way - we all have that some days - but having a vision of 'possibility' is surely the transformative factor - many of us here DO have hope that we WILL be 'better' - some day - something not everyone - everywhere is fortunate enough to have.
Please forgive if I sound like the parent who says: 'eat your peas' and 'you are lucky because children are starving in other places' ... but they are ...
Your friend
Rimmy
XX
Powerful, Rimmy!
One of my nephews is an epidemiologist that spent many years traveling the world (many times) inoculating children in third world countries. He has said that the happiest people he has met in his lifetime, and in his travels, are what we would consider the poorest. Makes one reconsider what is ‘wealth’.
in reply to Rimmy
... as expected; the most astounding, thought provoking, riveting train of thought, yet!
I have read it now several times, and I'm still finding "golden nuggets" imbedded in each each paragraph... I'm sure I will have to ingest the whole a few more times, before I am fully able to grasp your awe!
PS I love that you sound like the parent who says, "eat your peas and consider yourself lucky... children are starving in other places," because I can be the petulant child and you're right; children are starving in other places!!!!
xxxx
There is some beautiful writing here and in earlier posts. Someone should collate it into a book and donate it to the charity. “ Inspirations for .... “ Meditations for.....” How can I go forward when I don’t know which way I’m facing” John Lennon, Imagine.🌱
What a lovely idea, it could be another way to make money for the charity. Now who do we know that's good with words and needs to feel useful?
in reply to scats
Hmmmmmmmmm?
Hi Melissa, I too get where you are coming from. I am in the midst of diagnosis - 60mgs pred and no firm diagnosis yet. I too developed PMR and ?? vasculitis in November 2017 and am awaiting CT to possibly confirm the latter. It is life altering but I am trying to just take one day at a time. I read, I potter, I knit and I rest and I have been out maybe once or twice a week for about 1 hour at the maximum lately. Tough considering I was working full time up until this time last year but glad I have retired. Hang in there, be kind to yourself and hopefully the weather will help you find some relief. We are coming into winter here in NZ and not looking forward to it but will be turning up the heat pump and wearing merino woolies to keep warm. Don't care what I look like as long as I am warm. Cheers Jan
in reply to Janicep
It is difficult Janicep, especially if you're used to being active, going, seeing, doing, etc.
Yes of course we're turned around, weather wise! We are coming into spring! Yes, PLEASE keep warm!!!!! ...and be kind and gentle with yourself as well!!!
Melissa,
You write and the others have answered far more eloquently than I ever could.
However, I recall that you told us about the stages of grief and your rant speaks to me on that level. Most of us are having to work through those stages and keep cycling in and out of them.
Today, the sun is shining for the 'Tour de Yorkshire' and for the first time since diagnosis, I will try to do a maximum of one hour pulling up 2 years' worth of weeds in the garden - not the 8 hours I would have enjoyed pre PMR. This is my new normal and I can't compare myself to the neighbour who recently spent the whole of one day tending her window boxes and tubs.
You give so much to us all and it makes me hurt when you hurt. I hope that today will be better for you. (How do people put flower emojis here?!) x
Me: PMR 715 days!
in reply to Rugger
Thank you Rugger. Yes, the responses have been most eloquent, haven't they!!!!
"The new normal," I like that! I need to identify my "new normal."
Thank you, thank you for saying that I contribute... you have no idea how important that is to me!
715!!!!!! Holy moly! Good on ya!
Oh I feel your pain!! Have been having very bad phase of "fed up with this" myself. Reducing pred a bit so that always has a bad affect. My husband asked me in surprise the other day why I wasn't sounding quite as sympathetic as my nature would usually be to someone having back pain - to which I said rather bitterly "she'll be fine - she'll get something done and it'll be all grand" - and I was right - walking around now in high heels absolutely fine. Yes sometimes it just gets to us!! Wishing you the best!
in reply to powerwalk
Yes! I am in touch with that "wicked" side of myself a bit more frequently than I care to be!!!!! ; ) We are HUMAN! Forgive yourself first!
Another riveting read Melissa, my husband just glanced at your green witch photo as he made is way to his second home, the loo, and, not knowing what I was reading, he blithly commented 'oh it looks like you!' Say no more - we're twins!
Thank you for not censoring when you have negative feelings. So many people want us to be cheery and look on the bright side etc. We will do that when we can but there are times when it is just not possible. My moods can go up and down like a yo-yo and will depend a lot on the amount of pain I am in. Today is not a good day and I find I am on the verge of tears the whole time. I can't help feeling sad and angry about what has happened to me- my life is a shadow of what it was, but on many other days I can feel optimistic about what is to come. I have found it helps - in those bad moments- to remember I am safe and, actually OK ( not great). That is all.
Thank you Suzy1959, I agree wholeheartedly!!!!!
I just said to a friend yesterday, "I like to let my toes touch the very bottom, where all the muck is, so I know exactly how far up I need to go to reach the air!"
Melissa. Think we could now do with an exciting adventure! Google. Kishtwar Kaillash- Road To Basecamp. Hang on tight!!
in reply to
OMG!!!!!!! UNFREAKINBELIEVABLE!
I could not do it! I'd walk it... but no way I'd get in a vehicle!!!! Especially with someone other than ME, driving!!!!! The waterfall totally freaked me out!!!! I need an adventure, but this may not be it!!!!! xxx
Melissa,
only just read this.
No reason why you shouldn't feel green or any other colour for that matter. We are all human and have our ups and downs, I prefer the ups, but the downs can help us to focus.
One thing you are is real, you tell us what and how you feel, that to me is important. Keep doing what you do and remain true to yourself.
I can't write the way that you do, wish I could, maybe my posts would be better 
in reply to JulianJ
Ahhhhh, thank you Julianj! I prefer the ups too, but will always acknowledge and embrace the downs. I said to a friend the other day, that "I like let my toes touch the very bottom, where all the muck is, so I know exactly how far up I need to go to reach the air!"
Your posts are lovely... honest, heartfelt and always right on the money!!!!
Brilliant - Brilliant - Brilliant!!! what a wonderful way you have of expressing yourself, I for one can totally relate. Not shy to say this post has brought a tear to my eye.
in reply to ipsidipsy
Wow! What a lovely compliment you have paid me... if my words elicit any authentic human emotion, I am humbled. Thank you!!!!
Not what you're looking for?
You may also like...
Not directly PMR - but grandma was right: Eat up your greens!
Who's laughing about kale and spinach now?
https://www.medscape.com/viewarticle/984651?src=mkm_ret
Nothing Means Something and you Need to Worry!
I guess even those that \\"can,\\" rant anyway!...
Wasn’t No Stoppin Me!
Those that can't do... RANT!
https://rantingsofamadwomanblog.com/2018/09/10/wasnt-no-stoppin-me/...
PMR, GCA, Steroids, Rheumy’s, GPs and more… please more!
it was coming...
Warning: No warning needed, almost no profanity! Seriously!...
“… but anyone looking at you, wouldn’t know you were ill.”
Apologies for my post re Endo App.
