Time to move on gradually to new pastures - in life and in new blogging and writing…… experiments. I have started two new blogs…. For those who want to read about Hepatitis C issues I will continue to post occasional offerings here….
But now that I am two months past end of treatment, and just beginning to notice signs of being less sub-human and more of a functioning being… time for so new adventures. One of the possibilities I set my sights on as I gently go forward into life again, is writing more. Developing ways to explore words, play with themes, and especially for that to be in some way about growthfulness, a meaningful life and community. Crucial themes for me in any case, but perhaps from chronic or severe illness, many of us will build an even deeper commitment to an authentic path and to a shared experience of human living. And about healing, living, discovering…
Not to get too earnest though… I do hang out at another blog, just born a baby blog called cloud kooky land,. And everything there is really all just about creativity and exploring possibilities and allowing oneself to ease up, let go and feel more free. Lots of nonsense, random curiosities, some poems, a few games and moments or snapshots of different windows to look through
Just for fun and also because it’s a great thing to encourage one another to be creative and expressive…. And for me it all starts with play. So bring toys and games and much splashy good spirit…… see you at cloud kooky land
http://cloudkooky.blogspot.com/2011/01/mi-tree-house-es-sua-treehouse.html
(will keep this blog alive with ocassional posts on Hep C issues and - I hope - some guest bloggers from time to time.)
warm wishes and hope to see you at eva-everyday adventures
http://eva-everydayadventures.blogspot.com/
Tuesday, 11 January 2011
Monday, 10 January 2011
skin crawls and time crawls.....
Inspired by nanooska whose blogs and website I point you towards, below, have been thinking (again) about an aspect of HCV treatment which was intensely engulfing – the passage of passing minutes, days, weeks. Like Jenny and her liver, I could not bear to mark the time. That only extended it and made me screamingly hyper-aware. So I had a sort of mental trick of pretending to myself that each day was only just one separate day or experience within. Normally one wants continuity in life. Chuck it into storage while on treatment.
I was both fascinated and appalled by time distortion effects on tx. the brain fog (dense) for me, in itself meant that I could not engage in many activities to distract and ease the relentless hours. this is so for you, for many I am sure- and i did believe I lived 48 weeks with every 24 hour period. half a tx per day (that's my maths anyway) as for the angst: I certainly had as many different varieties and themes for that as I had ribas. I think hep c and tx induces it. And dark “stuff” general along with hugely heightened perceptions and reactions. much of my own angst was linked to the passing of time, the damned unremitting sheer slog through passing hours and days. I called that version of angst my MacBeth syndrome. ("tomorrow and tomorrow and tomorrow creeps in this petty pace from day to day ....") like the scottish prince, I too was bored, even with my own angst. Yet the mostly painful and disturbing thoughts or distorted fixations continued regardless of whether I wished to turn attention to more healing or cheerful possibilities. Since I had no real choice or control over intention and no over-ride mechanisms available. So each thought in itself became very bound up with the agony of time crawling – thoughts would stretch my brain to point of physical discomfort, and seemed to be also measured in seconds and minutes, like a clock in the head. I do know many will recognise or remember this. (One post –tx friend once commented, when I had written on the time factor horrors, that recalling it made his spine turn cold) This time warping and brain fogged mental taughtness is at least as nasty as many of the aches, joint pains and other physical discomforts of the disease and it’s tx. And often a HELL of a lot more so…..
How do you actually do this – just keep on going? People on treatment sometimes ask me. (ok, often ask me, actually!) My answer? After 48 weeks of tx, I still don’t know …… I just did it since the only way out was through. Either that or back to living with the damned disease which was not a choice worth considering, since it had already bashed my life and functioning self to bits in any case. Most of us who do treatment can’t really say how….. other than that simple hint for a lifetime: one day at a time. Stay in the present. Keep things as simple and clear as possible. Tell it like it is, wherever you can. Forgive self and life, whenever you can. Reach out for friends and connection – lots. And find stepping stones. Something that makes each day feel like there was a moment of reality, a gift or a treasure. Whether that is a phone call to someone easy to talk to, a piece of music you love, laughing at something silly on tv, watching a pretty sky….. whatever nourishes your spirit. Beyond the fog and the confusion: you are blessed and you are whole.
With love and healing prayers, eva day.
Jenny's blog (hcv and tx.) http://jennysliver.blogspot.com/
other blogs: anna annmarou.blogspot.com
Ian
Hex
(see my profile list)
I was both fascinated and appalled by time distortion effects on tx. the brain fog (dense) for me, in itself meant that I could not engage in many activities to distract and ease the relentless hours. this is so for you, for many I am sure- and i did believe I lived 48 weeks with every 24 hour period. half a tx per day (that's my maths anyway) as for the angst: I certainly had as many different varieties and themes for that as I had ribas. I think hep c and tx induces it. And dark “stuff” general along with hugely heightened perceptions and reactions. much of my own angst was linked to the passing of time, the damned unremitting sheer slog through passing hours and days. I called that version of angst my MacBeth syndrome. ("tomorrow and tomorrow and tomorrow creeps in this petty pace from day to day ....") like the scottish prince, I too was bored, even with my own angst. Yet the mostly painful and disturbing thoughts or distorted fixations continued regardless of whether I wished to turn attention to more healing or cheerful possibilities. Since I had no real choice or control over intention and no over-ride mechanisms available. So each thought in itself became very bound up with the agony of time crawling – thoughts would stretch my brain to point of physical discomfort, and seemed to be also measured in seconds and minutes, like a clock in the head. I do know many will recognise or remember this. (One post –tx friend once commented, when I had written on the time factor horrors, that recalling it made his spine turn cold) This time warping and brain fogged mental taughtness is at least as nasty as many of the aches, joint pains and other physical discomforts of the disease and it’s tx. And often a HELL of a lot more so…..
How do you actually do this – just keep on going? People on treatment sometimes ask me. (ok, often ask me, actually!) My answer? After 48 weeks of tx, I still don’t know …… I just did it since the only way out was through. Either that or back to living with the damned disease which was not a choice worth considering, since it had already bashed my life and functioning self to bits in any case. Most of us who do treatment can’t really say how….. other than that simple hint for a lifetime: one day at a time. Stay in the present. Keep things as simple and clear as possible. Tell it like it is, wherever you can. Forgive self and life, whenever you can. Reach out for friends and connection – lots. And find stepping stones. Something that makes each day feel like there was a moment of reality, a gift or a treasure. Whether that is a phone call to someone easy to talk to, a piece of music you love, laughing at something silly on tv, watching a pretty sky….. whatever nourishes your spirit. Beyond the fog and the confusion: you are blessed and you are whole.
With love and healing prayers, eva day.
Jenny's blog (hcv and tx.) http://jennysliver.blogspot.com/
other blogs: anna annmarou.blogspot.com
Ian
Hex
(see my profile list)
Friday, 7 January 2011
after treatment finishes..... ????
FOR END OF TREATMENT. BECAUSE WHEN TREATMENT IS FINISHED, FOR A WHILE IT CAN FEEL LIKE IT'S OVER...... BUT NOT. SO FOR ALL IN THAT PLACE. AND FOR ALL HEP C PATIENTS, INCLUDING THOSE WHO DO NOT OR CANNOT TREAT. AS WE ALL HAVE MANY EXPERIENCE IN COMMON. WE ARE SHARING THE DIFFERENT REALITIES WITH HONESTY AND COURAGE.
I have my horizon eyes on, ready to look ahead, to future dreams
what do I see? what awaits? hopeful yet cloudy, confused is how it seems
hard to have vision through mist or fog. brain fog. I never heard the phrase
before hep c. i think i remember a simplicity in daily life. those were the days.
times of a lost innocence; though I thought i knew so well, life's darker faces
Hep C is an intense experience which takes us to different and such surreal places
If I cannot see clearly, with strategy, plans and clear signposts to a joyful new start,
i choose to peacefully be in the present and listen to gentle guidance from the heart.
yes, it is also hard to hear clearly, both vision and instinct are obscured and uncertain
I feel as if I observe the ordinary world from a bubble or from behind an invisible curtain
where was the hoped for sense of freedom, relief, when hcv treatment had ended?
and some sense of being on solid ground with familar landscapes, on which I'd depended?
instead I found myself lost in a limbo land and feeling sore, tired, flat, empty and weary
not feeling excited, ready to set goals, as I had no reserves and everything seemed dreary.
But this too made me feel bad, I thought I was wrong or being negative, bleak not good enough.
and I talked with others who'd felt that too, more struggle after a treatment so horribly tough
we found some relief in shared insights that beyond the great battle, we meet a new fight
the people in our world may think, we are done with the meds, all is over and we are alright
and maybe, being full enveloped for so long in struggle, pain and mental and emotional distress
we forget to ease up on ourselves, allow a time of just being and not fear that it's all such a mess
I think i'm screwed up long-term by it all, and may not get me back we whisper to a good friend
yes, I have had so much courage, and patience and hope, day by long day to the finishing line
I am hurting and scared, need to feel still supported, and long to feel once again my spirit shine
and if perhaps one other person can hear this, that will help keep us hopeful, safe and steady
we may let go of too many goals and expectations and let recovery unfold, as we are ready
but the person who most needs to hear and accept is myself, knowing with in that i will just feel
a sense of reclaiming myself and my life, with renewed strength and inspiration, as I gradually heal
I send wishes to others that you be kind to yourself and hold in you heart thoughts of new flow
as the next stage of the journey unfolds, you will navigate and find your way through and grow
perhaps we are wounded: fear is there, for us all yet we may draw from it a treasure quite freeing
strength, compassion, sharing, and possibilities for new beginnings and authentic ways of being.
whatever your story, where you are in your journey, your challenges, hopes, dreams and prayers
I send you blessings, and much love, light and laughter, and thank you for being someone who cares.
with much love from eva day to all at the different stages of the Hep Journey and most especially to my wonderful friends who made each day a lot more doable. wishing a good road ahead to all. xx eva day
I have my horizon eyes on, ready to look ahead, to future dreams
what do I see? what awaits? hopeful yet cloudy, confused is how it seems
hard to have vision through mist or fog. brain fog. I never heard the phrase
before hep c. i think i remember a simplicity in daily life. those were the days.
times of a lost innocence; though I thought i knew so well, life's darker faces
Hep C is an intense experience which takes us to different and such surreal places
If I cannot see clearly, with strategy, plans and clear signposts to a joyful new start,
i choose to peacefully be in the present and listen to gentle guidance from the heart.
yes, it is also hard to hear clearly, both vision and instinct are obscured and uncertain
I feel as if I observe the ordinary world from a bubble or from behind an invisible curtain
where was the hoped for sense of freedom, relief, when hcv treatment had ended?
and some sense of being on solid ground with familar landscapes, on which I'd depended?
instead I found myself lost in a limbo land and feeling sore, tired, flat, empty and weary
not feeling excited, ready to set goals, as I had no reserves and everything seemed dreary.
But this too made me feel bad, I thought I was wrong or being negative, bleak not good enough.
and I talked with others who'd felt that too, more struggle after a treatment so horribly tough
we found some relief in shared insights that beyond the great battle, we meet a new fight
the people in our world may think, we are done with the meds, all is over and we are alright
and maybe, being full enveloped for so long in struggle, pain and mental and emotional distress
we forget to ease up on ourselves, allow a time of just being and not fear that it's all such a mess
I think i'm screwed up long-term by it all, and may not get me back we whisper to a good friend
yes, I have had so much courage, and patience and hope, day by long day to the finishing line
I am hurting and scared, need to feel still supported, and long to feel once again my spirit shine
and if perhaps one other person can hear this, that will help keep us hopeful, safe and steady
we may let go of too many goals and expectations and let recovery unfold, as we are ready
but the person who most needs to hear and accept is myself, knowing with in that i will just feel
a sense of reclaiming myself and my life, with renewed strength and inspiration, as I gradually heal
I send wishes to others that you be kind to yourself and hold in you heart thoughts of new flow
as the next stage of the journey unfolds, you will navigate and find your way through and grow
perhaps we are wounded: fear is there, for us all yet we may draw from it a treasure quite freeing
strength, compassion, sharing, and possibilities for new beginnings and authentic ways of being.
whatever your story, where you are in your journey, your challenges, hopes, dreams and prayers
I send you blessings, and much love, light and laughter, and thank you for being someone who cares.
with much love from eva day to all at the different stages of the Hep Journey and most especially to my wonderful friends who made each day a lot more doable. wishing a good road ahead to all. xx eva day
Thursday, 6 January 2011
my tree house (in cloud kooky land)
soon will post some extracts from a diary kept from end of treatment to desribe transition and recovery (physical and the "mentals" )
just started a second bloggy bloggo..... nothing about hep c just play and nonsense and random stuff. http://cloudkooky.blogspot.com/
that link is how to get there... if you want to hang out at my tree house sometimes.
this blog will continue to be about hep c
love, eva
just started a second bloggy bloggo..... nothing about hep c just play and nonsense and random stuff. http://cloudkooky.blogspot.com/
that link is how to get there... if you want to hang out at my tree house sometimes.
this blog will continue to be about hep c
love, eva
absent? or present? morning moods....
"Hey!!" shouts the morning, "Hey! Wake Up!! The World is Happening! Be Busy!"
"Sshhhh" says the mist, which melted my dreams and all my certainties,
through th eunampped territory and vast expanses of the long night.
"Play!" calls the Sun, from a solar station beyond a crazy cloud!
"Slowly, softly ......." whispers the moody mist.
" Sun, your rays this morning do not warm me, I am to far removed...
absent. there is no warmth in bones or muscles, no strength in
weary heart. no inspiration. I am wanting needing only to
fold myself in comfortable blankets of oblivion."
"Be Present!!" insists Sun. "This is a new day, this is a moment!
Dance! Dance!" calls out the Sun, the bossy brilliant bastard.
too bright, eyes hurt, too brilliant, mind closed down, heart in retreat.
this is a moment of mystery, a blank of peace, a blank.
"Come On!" urges Sun-Sun, swinging boldly into the sky. Crash!!
Wind shows up like sun in boisterous mood, blasts brain...
"Gently!!" mutters mist, "Wind, you so sudden so abrupt! Sun you so Solar, so Alpha, so insistent!"
"Bloody ingratitude!" snarls the Sun, getting all hot and bothered and
bounces off to put the heat on somewhere else.....
"Dance!!" whispers the mist of moody magic... and I sway slowly, gently,
letting the swirls teach me a new rhythm. taking one lyrical step and
another.... in tune to the music of this morning,
"Well, it's a start, I guess!" yells the sun, a bit beyond it, horizon wise.
I move quiet through the sahdows and mists of the day and find
soft breeze and gentle sunlight filtered through a protective mist.
9THIS POEM IS MY DESCRIPTION OF THE NEED SOMETIMES TO BE IN A HEP C OR TREATMENT BUBBLE AND OF THE DIFFERENT RHYTHMS OF EMERGING AND BEING PRESENT OR ALLOWING OURSELVES TO DISCONNECT AND REST. IT IS ONE OF THREE LINKED POEMS ... EARLY DAYS OF POST TREATMENT. THIS ONE FOR DEB Z. AND FOR EVERYONE WHO KIND OF GETS IT?)
WITH LOVE FROM EVA DAY
"Sshhhh" says the mist, which melted my dreams and all my certainties,
through th eunampped territory and vast expanses of the long night.
"Play!" calls the Sun, from a solar station beyond a crazy cloud!
"Slowly, softly ......." whispers the moody mist.
" Sun, your rays this morning do not warm me, I am to far removed...
absent. there is no warmth in bones or muscles, no strength in
weary heart. no inspiration. I am wanting needing only to
fold myself in comfortable blankets of oblivion."
"Be Present!!" insists Sun. "This is a new day, this is a moment!
Dance! Dance!" calls out the Sun, the bossy brilliant bastard.
too bright, eyes hurt, too brilliant, mind closed down, heart in retreat.
this is a moment of mystery, a blank of peace, a blank.
"Come On!" urges Sun-Sun, swinging boldly into the sky. Crash!!
Wind shows up like sun in boisterous mood, blasts brain...
"Gently!!" mutters mist, "Wind, you so sudden so abrupt! Sun you so Solar, so Alpha, so insistent!"
"Bloody ingratitude!" snarls the Sun, getting all hot and bothered and
bounces off to put the heat on somewhere else.....
"Dance!!" whispers the mist of moody magic... and I sway slowly, gently,
letting the swirls teach me a new rhythm. taking one lyrical step and
another.... in tune to the music of this morning,
"Well, it's a start, I guess!" yells the sun, a bit beyond it, horizon wise.
I move quiet through the sahdows and mists of the day and find
soft breeze and gentle sunlight filtered through a protective mist.
9THIS POEM IS MY DESCRIPTION OF THE NEED SOMETIMES TO BE IN A HEP C OR TREATMENT BUBBLE AND OF THE DIFFERENT RHYTHMS OF EMERGING AND BEING PRESENT OR ALLOWING OURSELVES TO DISCONNECT AND REST. IT IS ONE OF THREE LINKED POEMS ... EARLY DAYS OF POST TREATMENT. THIS ONE FOR DEB Z. AND FOR EVERYONE WHO KIND OF GETS IT?)
WITH LOVE FROM EVA DAY
Not about Hep C - about living...
You do not see me, you see my disease, since I am far removed and in a a bubble
I am like a doppelganger, an inverse mirror image of myself, my own weird double.
I do not see me, but feel invasion, swallowed by this relentless virus which impacts
on every aspect of my life, and state of mind and emotions, beyond biological facts.
My body hurts and I am sick, I see my life disintegrate & my thoughts scream in pain.
friendships, work, balance, lifestyle, money, simple functioning, washed down the drain
of a black hole, this enemy that flooded organs, blood, the person and the life I built.
I went through every Hepper's turmoil of reactions, fear, loss, inadequacy, anger, guilt.
But we allow, accept these responses if we meet the fight with spirit and with faith.
even when spirit seemed absent and I felt I was a shadow, empty, ghostly, like a wraith.
though I was lonely, yet I did not wish for you to see me, all I wanted was to hide.
I longed to feel connected but needed to be invisible, disappear behind a wall of pride.
Was it painful when you watched me struggle to stay active, mumble when I tried to speak?
Feeling that I looked like crap, and with mood swings & confusion must seem such a freak.
It was sweet and sad to see your kindness in watching for me when I started to crumble
understanding, patience as my body became weaker and thoughts and feelings such a jumble.
you've missed me yet I've been here & so have you: I needed you to be able to stay close.
But not expect me to respond, do, engage: and to do I did not wish to be vacant or morose.
Thank you and please know you did not see me, the person: you saw the virus take a grip.
It is calming when a friend was a safe presence when I felt my screaming mind would rip.
And yet I know, you did see me, in a deeper, more whole sense, beneath the foggy layers.
For the times you waited, listened, were gently there for me, I hold you in my prayers.
I was bored with living, talking, thinking, swamped with HCV; nothing else had a place.
And now the greatest heat of battle eases of, we need some relief and breathing space.
As new beginnings offer promise, and recovery unfolds, let's walk that road together.
I talked of mists, wind, sun. You were a good companion through every kind of weather.
There is no loss, no struggle, fear, blame or doubt that a dragon fighter cannot release,
In shared support & the beautiful kindness of those who believe in healing & in peace.
with much love to all sharing the dragon fighters battle, eva day. xx
THIS IS ONE OF THREE POEMS WRITTEN TWO MONTHS AFTER END OF TREATMENT, LOOKING AT HOW TO MEET EACH DAY THROUGH SLOW RECOVERY AND TO BEGIN TO LOOK TO NEW HORIZONS AND RECLAIMING LIFE.....
I am like a doppelganger, an inverse mirror image of myself, my own weird double.
I do not see me, but feel invasion, swallowed by this relentless virus which impacts
on every aspect of my life, and state of mind and emotions, beyond biological facts.
My body hurts and I am sick, I see my life disintegrate & my thoughts scream in pain.
friendships, work, balance, lifestyle, money, simple functioning, washed down the drain
of a black hole, this enemy that flooded organs, blood, the person and the life I built.
I went through every Hepper's turmoil of reactions, fear, loss, inadequacy, anger, guilt.
But we allow, accept these responses if we meet the fight with spirit and with faith.
even when spirit seemed absent and I felt I was a shadow, empty, ghostly, like a wraith.
though I was lonely, yet I did not wish for you to see me, all I wanted was to hide.
I longed to feel connected but needed to be invisible, disappear behind a wall of pride.
Was it painful when you watched me struggle to stay active, mumble when I tried to speak?
Feeling that I looked like crap, and with mood swings & confusion must seem such a freak.
It was sweet and sad to see your kindness in watching for me when I started to crumble
understanding, patience as my body became weaker and thoughts and feelings such a jumble.
you've missed me yet I've been here & so have you: I needed you to be able to stay close.
But not expect me to respond, do, engage: and to do I did not wish to be vacant or morose.
Thank you and please know you did not see me, the person: you saw the virus take a grip.
It is calming when a friend was a safe presence when I felt my screaming mind would rip.
And yet I know, you did see me, in a deeper, more whole sense, beneath the foggy layers.
For the times you waited, listened, were gently there for me, I hold you in my prayers.
I was bored with living, talking, thinking, swamped with HCV; nothing else had a place.
And now the greatest heat of battle eases of, we need some relief and breathing space.
As new beginnings offer promise, and recovery unfolds, let's walk that road together.
I talked of mists, wind, sun. You were a good companion through every kind of weather.
There is no loss, no struggle, fear, blame or doubt that a dragon fighter cannot release,
In shared support & the beautiful kindness of those who believe in healing & in peace.
with much love to all sharing the dragon fighters battle, eva day. xx
THIS IS ONE OF THREE POEMS WRITTEN TWO MONTHS AFTER END OF TREATMENT, LOOKING AT HOW TO MEET EACH DAY THROUGH SLOW RECOVERY AND TO BEGIN TO LOOK TO NEW HORIZONS AND RECLAIMING LIFE.....
Monday, 27 December 2010
box full of crap at xmas????
A BOX FULL OF CRAP.
Hey, look, if you you feeling really festive, and enjoying that, and it’s genuinely a relief and respite from sickness/ treatment/ Hep C /// good on ya, and please wander off somewhere else and maybe not even read this. Unless you want to get sense of how others might be feeling bloody bleak with it all. Or you are one of those who is feeling that way in which case, hopefully this is at least some kind of space for acknowledging and allowing that.
So; first part of this was written on Boxing Day and I was thinking about .. boxes. Yeah, I think about some really weird stuff, quite often, more and more the further along the surreal HCV road I go. Should I worry about this??? And certainly sometimes I do – fear that the whole package has fundamentally mangled up both my brain and personality and the other eva is.. gone. Or should I regard to it as maybe a positive thing...... a sort of interesting (if sometimes awful and demented and tiring) adventure into broader and more varied perspectives of life and an expanding of possibilities and awareness of life, self and others realities?
Which leads me neatly back into the thing about boxes. I hate, instinctively, so many of the kind of social attitudes and conventions which close us in or narrow our experience, attempt to categorise us and create divisions from others or from aspects of own self and of life. Always have done and Hep C anyway tends to build it;s own box around you....... especially if you go through periods of being housebound (what a prison type box that can be) or struggle to communicate (boxed in to own silent but lonely world... pretty damned painful.)
And no, I am not going to draw on much over-worked popular cliché of “thinking outside the box” – it’s probably become pretty meaningless and often these days just means.... having a good idea. Or suggestion no one else had yet meant. But as a symbol a box is still a good one for the kind of limitations and trapped feeling I am describing. And the obligation (real of imagined / conditioned) to Have A Good Time at Christmas and do the whole thing. Magic, if that’s really where you are, but how may sick people have felt like they acted it all through like a Charade – when actually they were bloody tired and just wanted Christmas (and everyone) to Go Away???
Most years, I really enjoy Christmas and all the fun and magic (different to hating all the commercial or forced aspects of it.) This year, I just felt totally disengaged, ill, tired and past it. Like So What? Aware of feelings of good will and caring sentiments to others, but thinking – well I think that would be so regardless of the calendar date.
Felt lonely, miserable, isolated and fed up for much of Christmas Day and Boxing Day. Not anyone’s fault. Husband and daughter were with me, and both being delightful, and mellow and easy. And not putting expectations on me. Big ups to them. And we are all pretty straight with each other, so I did tell them (without too much angst) how damned lousy I was feeling. But of course, selfish moments we may have when ill but we do want to be fair on others. So yeah, there were a few moments when I quietly tucked self in bedroom and had tears and releasing hurt of such relentless struggle over the last few years. And total trashing of normal life. And damned disappointment (plus some guilt and inadequacy of course) at hardly being able to play half a simple board game, watch a tv programme and understand it or do nice things with loved ones. Didn’t cook, clear up or really contribute anything to them. Except hope and appreciation.
So I didn’t so much have Fairy Tale expectations of what I thought Christmas should be ... I think it was more that it highlighted a sort of over-view of the whole journey over years of illness. And intense post-tx frustration and not... being better than I am yet. Which i had certainly anticipated.
There must be so so many people who are ill with this diease who are in really difficult circumstances. Perhaps alone a lot, or don’t have family/friends/carers to help them keep going one day at a time. And certainly i know a number of people with broken relationships, real financial problems, impossible work situations, secondary or co-morbid health conditions and all sorts of challenges.
Not Scroogey or dour or anything except pretty understandable if some just feel like gritting their teeth and wanting Xmas and New Year to be done and gone. Maybe those who feel that way need some kind of network or club where they can at least have the chance to see..... oh god, it is sad and hard.
But its aint just Christmas. It is finding ways to relate or make sense of all the apparently normal conventions and routines of everyday life and lifestyle of people out there in the big wide world, everyday world of normality.
Sometimes – simple things that others take for granted become more and more remote and unreal.. Distant memories or just material of “yup, I am on another planet, feel like an alien.” I am talking about matter of fact stuff (for functioning people) like driving, going to a shop, pottering around the house, following current affairs – which to me these days seem like science fiction and very strange and far away. Or caring about things that used to be important fundamentals.... like even how clean and tidy is your house? Well , I do care, but I like many have quite simply HAD to let a lot of things go.
Can’t remember what it feels like to actually go out and visit someone else’s home. But was remembering that standard phrase people use when they welcome you on arrival..... “So sorry about the mess!” Ha!! I would laugh. Live with Hep C for a few years and you will get past apologising for:
The “mess” the horrible bad hair days the fact that you cannot hold a coherent conversation and not having replied to phone calls messages or answered front door for one million years. Also having lost all sense of style and fashion consciousness, not bothering to pretend you like your neighbours anymore or even can be bothered to speak to them and not remembering anyone’s birthday or having the patience to not scream at people standing in shop doorways if ever you do venture out.
Also
Recently, in the news, in bad, snowy weather..... and old man feel in the snow. He lay in the street for six hours...... half unconscious and helpless, while people walked past him. SIX HOURS. What kind of a world is that to live in??? When somebody finally intervened, and helped and got him an ambulance – turned out no he wasn’t some useless old drunk not worthy of care (not my attitude, just one that seems to be out there) but a guy who had collapsed with minor stroke and undiagnosed infection..... who could have bloody well died of hypothermia.
So I just think that Christmas or not... a kind world as much as possible, and some community, awareness and belonging, is more important than any fancy baubles on a tree, the best stuffing for your organic Celebrity Chef Turkey Recipe or whether to invite a colleague you never even talk to the rest of the year to drop in for a sherry. Cynical – no I don’t think so. Was thinking about those years when things are tough (though maybe you look back now and realise they weren’t that grim compared to Hep C) and you got out the Xmas decs and they looked like a box of sad old crap.... I was imagining, earlier, what my box of trimmings and decorations would have looked like this year, had I bothered to decorate. Which I did not, was to uninterested and damned tired and priority becomes about just where and how you channel any energy you do manage to summon.
Well, I pictured a few strands of bedraggled grey tinsel and some shabby khaki (or kacky?) coloured baubles. Yeah, well at least that made me laugh..... sometimes I think Hep C is like a box of crap .
Oh well, New Year soon, have a happy and upbeat one and I DO wish you new beginnings (postivie) and better road ahead. Xxx love eva
Hey, look, if you you feeling really festive, and enjoying that, and it’s genuinely a relief and respite from sickness/ treatment/ Hep C /// good on ya, and please wander off somewhere else and maybe not even read this. Unless you want to get sense of how others might be feeling bloody bleak with it all. Or you are one of those who is feeling that way in which case, hopefully this is at least some kind of space for acknowledging and allowing that.
So; first part of this was written on Boxing Day and I was thinking about .. boxes. Yeah, I think about some really weird stuff, quite often, more and more the further along the surreal HCV road I go. Should I worry about this??? And certainly sometimes I do – fear that the whole package has fundamentally mangled up both my brain and personality and the other eva is.. gone. Or should I regard to it as maybe a positive thing...... a sort of interesting (if sometimes awful and demented and tiring) adventure into broader and more varied perspectives of life and an expanding of possibilities and awareness of life, self and others realities?
Which leads me neatly back into the thing about boxes. I hate, instinctively, so many of the kind of social attitudes and conventions which close us in or narrow our experience, attempt to categorise us and create divisions from others or from aspects of own self and of life. Always have done and Hep C anyway tends to build it;s own box around you....... especially if you go through periods of being housebound (what a prison type box that can be) or struggle to communicate (boxed in to own silent but lonely world... pretty damned painful.)
And no, I am not going to draw on much over-worked popular cliché of “thinking outside the box” – it’s probably become pretty meaningless and often these days just means.... having a good idea. Or suggestion no one else had yet meant. But as a symbol a box is still a good one for the kind of limitations and trapped feeling I am describing. And the obligation (real of imagined / conditioned) to Have A Good Time at Christmas and do the whole thing. Magic, if that’s really where you are, but how may sick people have felt like they acted it all through like a Charade – when actually they were bloody tired and just wanted Christmas (and everyone) to Go Away???
Most years, I really enjoy Christmas and all the fun and magic (different to hating all the commercial or forced aspects of it.) This year, I just felt totally disengaged, ill, tired and past it. Like So What? Aware of feelings of good will and caring sentiments to others, but thinking – well I think that would be so regardless of the calendar date.
Felt lonely, miserable, isolated and fed up for much of Christmas Day and Boxing Day. Not anyone’s fault. Husband and daughter were with me, and both being delightful, and mellow and easy. And not putting expectations on me. Big ups to them. And we are all pretty straight with each other, so I did tell them (without too much angst) how damned lousy I was feeling. But of course, selfish moments we may have when ill but we do want to be fair on others. So yeah, there were a few moments when I quietly tucked self in bedroom and had tears and releasing hurt of such relentless struggle over the last few years. And total trashing of normal life. And damned disappointment (plus some guilt and inadequacy of course) at hardly being able to play half a simple board game, watch a tv programme and understand it or do nice things with loved ones. Didn’t cook, clear up or really contribute anything to them. Except hope and appreciation.
So I didn’t so much have Fairy Tale expectations of what I thought Christmas should be ... I think it was more that it highlighted a sort of over-view of the whole journey over years of illness. And intense post-tx frustration and not... being better than I am yet. Which i had certainly anticipated.
There must be so so many people who are ill with this diease who are in really difficult circumstances. Perhaps alone a lot, or don’t have family/friends/carers to help them keep going one day at a time. And certainly i know a number of people with broken relationships, real financial problems, impossible work situations, secondary or co-morbid health conditions and all sorts of challenges.
Not Scroogey or dour or anything except pretty understandable if some just feel like gritting their teeth and wanting Xmas and New Year to be done and gone. Maybe those who feel that way need some kind of network or club where they can at least have the chance to see..... oh god, it is sad and hard.
But its aint just Christmas. It is finding ways to relate or make sense of all the apparently normal conventions and routines of everyday life and lifestyle of people out there in the big wide world, everyday world of normality.
Sometimes – simple things that others take for granted become more and more remote and unreal.. Distant memories or just material of “yup, I am on another planet, feel like an alien.” I am talking about matter of fact stuff (for functioning people) like driving, going to a shop, pottering around the house, following current affairs – which to me these days seem like science fiction and very strange and far away. Or caring about things that used to be important fundamentals.... like even how clean and tidy is your house? Well , I do care, but I like many have quite simply HAD to let a lot of things go.
Can’t remember what it feels like to actually go out and visit someone else’s home. But was remembering that standard phrase people use when they welcome you on arrival..... “So sorry about the mess!” Ha!! I would laugh. Live with Hep C for a few years and you will get past apologising for:
The “mess” the horrible bad hair days the fact that you cannot hold a coherent conversation and not having replied to phone calls messages or answered front door for one million years. Also having lost all sense of style and fashion consciousness, not bothering to pretend you like your neighbours anymore or even can be bothered to speak to them and not remembering anyone’s birthday or having the patience to not scream at people standing in shop doorways if ever you do venture out.
Also
Recently, in the news, in bad, snowy weather..... and old man feel in the snow. He lay in the street for six hours...... half unconscious and helpless, while people walked past him. SIX HOURS. What kind of a world is that to live in??? When somebody finally intervened, and helped and got him an ambulance – turned out no he wasn’t some useless old drunk not worthy of care (not my attitude, just one that seems to be out there) but a guy who had collapsed with minor stroke and undiagnosed infection..... who could have bloody well died of hypothermia.
So I just think that Christmas or not... a kind world as much as possible, and some community, awareness and belonging, is more important than any fancy baubles on a tree, the best stuffing for your organic Celebrity Chef Turkey Recipe or whether to invite a colleague you never even talk to the rest of the year to drop in for a sherry. Cynical – no I don’t think so. Was thinking about those years when things are tough (though maybe you look back now and realise they weren’t that grim compared to Hep C) and you got out the Xmas decs and they looked like a box of sad old crap.... I was imagining, earlier, what my box of trimmings and decorations would have looked like this year, had I bothered to decorate. Which I did not, was to uninterested and damned tired and priority becomes about just where and how you channel any energy you do manage to summon.
Well, I pictured a few strands of bedraggled grey tinsel and some shabby khaki (or kacky?) coloured baubles. Yeah, well at least that made me laugh..... sometimes I think Hep C is like a box of crap .
Oh well, New Year soon, have a happy and upbeat one and I DO wish you new beginnings (postivie) and better road ahead. Xxx love eva
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