Those that can't do.... rant.
Grief, “Pay me now, or pay me later.”: Those that... - PMRGCAuk
Grief, “Pay me now, or pay me later.”
27 Replies
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I get it mamici1, Feels like my life too since I was 5 years old, trauma after trauma ! Thanks for posting that. Seem that I had a tough little soul in there though! Always hearing “you handle stress well”. NOT! maryanne.
Maybe we have something in common, MaryA. To handle stress 'well', you probably need to have the right sort of emotional foundations. If you don't, for whatever reason, you're not off to a good start, and it's a long, hard climb.
I grew up in a post-WW2 family, totally riddled with post-traumatic stress, and all that goes with it. Indeed, when I look at my parents' early lives, traumatic stress was the predominant feature, even before WW2, between the wars, before WW1 . . . . Trauma after trauma after trauma. They couldn't be adequate parents because of the weight of their own problems. It made the first 50 years of my life pretty hard to deal with, but once I became able to think about it, at least I wasn't labouring under the illusion that life was a picnic. ("Death is easy - it's life that's hard.")
So, I'm OK contemplating the fact of my own mortality - no sweat. Take as a viewpoint some distant spot in the universe, and it puts into perspective the significance or otherwise of life on our minuscule planet. Doesn't make human interactions any easier, though. And confronting the mortality of those who make my life meaningful, on a personal level, is a whole other ball game. Still working on that . . . .
Thats a lot of loss and self management. The presentation of self front of stage might keep us going but when the stressors are going on back stage then one day it will effect our performance. I too lost my mum from lung cancer and indeed it is deep loneliness and 12years on i still occasionally go to phone her.
I felt very sad reading your story and hope that you are not blaming yourself in any way. Nobody could deal elegantly with all those body blows, nobody. My story pales in comparison to yours but I have nobody left from my original family. Even my two most significant exes died young. My 2 daughters are in Australia with my 4 grandchildren. My post grad son is still at home in a miasma of indecision about his future. I hope I am not anything to do with his seeming inability to move on.
I do understand the storing of grief though, at times I have felt like the old woman who swallowed a fly.............
in reply to SheffieldJane
Oh thank you, but please don't feel sad... this was an epiphany, after all!!! Knowing that I store unresolved grief is half the battle! I can now do everything in my power to come to grips with it (when presented with it) and help it to dissipate before it turns against me? Yes, Tommy was the last member of my original family and my children, like yours are not that close. So I too am now alone with no one to corroborate my existence prior to my being 23! I don't blame myself... nor should YOU for decisions my mind/body decides to make on my behalf. We will both get through this and learn some powerful lessons along the way! Xxx
You too seek the centre of other people’s pain, as a helper.I trained as a counsellor and have always been drawn to the extremes of the suffering of others with a strong desire to make it better. I was working with the victims of domestic violence when PMR felled me. I see that you were working for the Hospice movement latterly. The final frontier. That has always appealed to me too. 🌸
in reply to SheffieldJane
It is interesting that people who have had a challenging journey, usually end up helping others who are on similarly difficult paths... you'd think we'd run far and fast, but we are drawn to their pain and struggle for some reason. (?) Yes, "the final frontier," it captures the imagination doesn't it?
MaryA_ in reply to
I was beginning to think something was wrong with me! You are wise. Thank you ladies, you are putting a lot of prospective on this journey. maryanne
A forensic delve into loss and grief, I recognise so much of this. If PMR has any positive outcome it is the time I am forced to take NOT doing anything such as managing others' distressing end of life situations, of which I had many years with close family and a dear friend. You say 'resentment' and 'abandonment' and I hear myself respond, yes despite my very best efforts they all did die and I didn't make that crucial difference however much I sacrificed my time, my love, my efficient 'managing' energy and eventually my own health. It seems to me that part of our unresolved grief (those subterranean depths below the regrets and the sheer absence of a loved person) lies in our stark confrontation with our own mortality as we do our utmost for them in their extremity, and our putting that realisation into a box labelled 'something to think about later' which we (or I) can then ignore on our conscious level.. How could they die, they were invincible, and I couldn't save them...and the same will happen to me. Grief and fear go arm in arm.
Very thought-provoking, emotionally truthful writing, mamici1, thank you. I shall go on thinking about this, and your continuing work with end of life patients .. you have the bravery of true compassion.
in reply to Slowdown
Wow! Thank you. You packed a lot into that short paragraph! I will need to analyse and digest fully, but I'm immediately struck by a few things:
1. "...the time I am forced to take NOT doing anything." Yes, I too am learning this is a POSITIVE outcome. 85 days ago that would have been UNTHINKABLE.
2. "...part of our unresolved grief... lies in our stark confrontation with our own mortality." I could not agree more! I think, I believe, I have come to grips with my own mortality, but in reality I just teeter on the edge of the abyss and peer over!
3. "...the same will happen to me." HA! Yes... 10 out of 10 people die!
Thank you again!!!!
SAw this today and thought of your post - a quote from Audrey Hepburn - As you grow older, you will discover you have two hands: one for yourself, the other for helping others. Seems appropriate one for you Mamici1. X
in reply to Pongo13
How lovely.... Thank you !
This is all such precious wisdom. Dare I say that these diseases have forced us to stop and take stock. To notice what has happened in the years that have fled by, the cost to us and the gifts that were in amongst all the pain. I’m not sure that I would have stopped for anything else.
“ The unexamined life is not worth living” Socrates ( at his trial for impiety and the corruption of youth).
My mum above all, taught me how to die as I sat with her for the long day as she breathed her last. Somehow she took the fear out of it and has taught me to do it, breath by breath. She will be with me when it’s my turn.
Thank you everyone, for an oddly profound and welcome start to the day.
It was our joke through many a crisis, "you don't die until I tell you", then one day I did... and the fifty year love of my life sighed, relaxed and left.
in reply to SheffieldJane
ShefieldJane, Thank you for adding to this "oddly profound" discussion... I love the line, "To notice what has happened in the years that have fled by, the cost to us and the gifts that were in amongst all the pain." Simply beautiful!!!!!
Hi mamici
Thank you for sharing so much of yourself - that is very generous of you !
Today is actually the 2nd anniversary of my only sister's 'accidental' death and I have already spent quite a lot of it blubbering and can relate to much of what you said.
She was 5 years younger than me and I always saw her as vivacious and 'attractive' - while I was always the slightly more 'sensible' one. Although I certainly managed to mess quite a few things up in my life when i was younger I somehow got onto a more balanced trajectory and became an 'academic' in my 30's and helped to develop a successful violence prevention service later on. Meanwhile my sister persisted with what I saw as a chain of hapless hopeless relationships lubricated by lots of drugs and alcohol. To cut the story short two years after threatening to kill herself (which I was convinced she would never do) it seems she 'accidentally' overdosed on prescription drugs topped off with just enough methadone to repress her central nervous system and stop her breathing. I was living in OZ and she was in a regional NZ city when this happened and I hadn't seen her for a year or two. Then she looked terrible and hardly emerged from her room and bed to see me and was clearly very depressed and agoraphobic. The pile of medications on her table hardly even surprised me - and rather insensitively I thought this is just 'typical' of her and I felt cross she had made no real effort to engage when we had flown & driven miles to see her.
Anyway her death hit me like a wrecking ball - I found it almost impossible to begin to digest the grief I felt. It was not long after that (I realised later) the first obvious symptoms of PMR even GCA started to emerge. Two years later the grief is still very powerful - but i have come to slowly realise it is inevitably the 'price' of love and to feel it and express it is always better than suppression. Thanks again mamici
in reply to Rimmy
Ohhhh Rimmy, I am so very sorry. Perhaps the need I felt to express my truth, was not for me at all... but for you? Maybe you needed to relive, reevaluate, remind yourself of your love for her (on this important day) and get a better (albeit more distant) understanding of her pain. I can't imagine what you went through... knowing it was most likely an "accident." It is interesting that your PMR emerged soon after that trauma... Sending love and light on this day.
Rimmy in reply to
Thanks for your warm and thoughtful expressions mamici -
I well understand that we ALL have lots of internalised grief and as someone else has alluded to here - it is part of being 'alive' - and almost impossible to avoid completely. And I realise it is hard to make direct correlations but I am almost convinced that these massively overwhelming experiences can be precursors to PMR/GCA (and likely many other diseases) - or 'triggers' as they call them. It may be that we also 'need' to have the genes or the dispositions for these to materialise - whatever those factors are - but so many people here and elsewhere talk about some major event(s) preceding their illnesses. Whether we consider any traumas to be primarily 'physical' or 'emotional these aspects are inevitably interrelated anyway and implicitly contradict any concepts we may have of our minds and bodies being in any way 'separate'. What we call 'grief' exemplifies these interconnections - when it becomes 'everything' that seems to hurt ...
Thanks to all of you who contributed to this powerful and very moving thread ...
Best wishes
Rimmy
Thank you Mamici1 for such a provokative post,- thoughts, emotions, memories.
I am so in awe of the many caring and selfless contributers to this site and feel humbled.
It has been good, though tearful, to go back to my overwhelming moment of loss and find that although I am still walking a tightrope over a black abyss, I now have a brightly coloured parapluie and can often see the sun.
Sometimes it is good to pick the spot and let the pus out.
Like for many, I think, my PMR symptoms were ascribed to Grief for many months before other diagnoses were considered, despite presenting with classic symptoms. Anyone aware of any research into this, I would be interested to read it.
in reply to fren
Thank you Fern, for expressing so well the satisfaction of "picking the spot and letting the pus out." Not a GREAT visual, but so very apt!
...and tearful can be a GOOD thing!
“Heaven knows we need never be ashamed of our tears, for they are rain upon the blinding dust of earth, overlying our hard hearts. I was better after I had cried, than before--more sorry, more aware of my own ingratitude, more gentle.”
― Charles Dickens, Great Expectations.
Sending a hug out to all you special people and the ones who watch silently from the wings.
Oh my goodness what an incredible thread this is. As one who mostly "watches silently from the wings" I feel the need this time to join in and say I think you have all hit the nail on the head with the Grief thing. Thanks to Mamici and others for articulating this so well, such moving stories.
I can definitely relate to the idea of "complex grief". Yesterday was a big anniversary for me too - the date my husband died (slowly and horribly) of pneumonia, 11 years after he was paralysed from the chest down in a motorbike accident. I spent those 11 years single handedly caring for him (we weren't entitled to any help as we had savings) and our young son, whilst also working full time (from home).
I feel I was basically a massive shock absorber for all those years. I soaked up the shock of his accident (didn't shed a tear for the first 6 months); soaked up the daily stress of life-threatening medical situations (blocked catheters, chest infections, pressure sores down to the bone, MRSA and C-difficile infections, PEG feeding when he lost the ability to swallow); tore myself in two trying to be there for him whilst creating a "normal" life for my child.
Despite giving 100%, nothing I did could alleviate his suffering - and in the end I couldn't prevent his death either. After he died I felt I'd already spent the last decade grieving (for the loss of his health and of the life we had planned together). I wanted to move forward, and to enjoy some happy time with my son in those precious few years before he flies the nest. I guess I had had enough of grief. I wanted to rebuild my life, not "waste time" wallowing about in more misery.
But guess what, grief had other ideas and PMR eventually came calling. After much soul searching I've reached the same conclusion - I've got lots of grief all stored up in my body. Maybe that's true of most people after 55 years on the planet. But what is the solution, how to get it out??? Answers on a postcard please...
Kathryn
Oh, Katie-w53, my heart goes out to you.
No pat answers but, re grief: I guess what we are doing here is part of 'getting it out'. Might take a while . . . .
Thanks BonnyQuine. And yes, this forum is invaluable in helping us "process" things. We'll all get there eventually...
katie-w53, Thank you for coming in from "from the wings," we all needed to hear your story!
I don't believe in coincidences; it was meant to be that you too were experiencing a special anniversary and inspired by this thread to share yours! Good on you.
If I have played even the smallest part in you being inspired to remember and share, I am honoured.
And, indeed, how do we get it all out?????
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