The following is a piece of creative writing, with a theme of Hep C and also of the intensity at times of living a great deal of one’s reality via internet, forums, facebook and “D or virtual cyber-space interactions. Which is really a genuine and complex dilemma for many who have chronic long-term illness, especially those relatively isolated as I consider myself to be in many ways. Although not a great lover of people’s detailed relating of dreams etc, I have decided to share it as a sort of window for anyone who relates to some of the more nebulous, often disturbing and darker side of the psychological aspects of Hep C and of adjusting to a life turned inside out completely.
For that reason, it is changed from a simple dream and adapted to include some aspects of daydreams and serious waking thought trains and strange things that I (and others) often contemplate either through long hours of weary and confusing illness (treatment or not) or as a result of disrupted brain and thinking due to heavy duty meds
Have just woken from a nightmare in the early hours of day after Boxing Day. A nightmare about the Hep C Forum I belong to and also about the disease itself. Want to write this now, as it feels important to me to capture some of the themes and feelings – and what seems to be part of a process. When I first awoke, it was when of those slow returns to normal reality where a part of your brain knows that it was a bad dream, but another part is insisting how real it seems and how horrifying. I felt very sad when I woke and my chest was hurting, I think it was a message from my heart.
I dreamed about the stories and entertainment I regularly write or create for the Cafe (social section) of the forum. (a reality, I actually do weave various flights of fantasy or odd and curious distractions, as a contribution of some kind, a way of helping sick people get through maybe a bloody difficult day. And an outlet for covert tensions, within a generally very positive community.
The stories had of their own accord somehow evolved or mutated, and created and bred characters of the type I really do invent. Already I can’t remember all the details... dreams slide away so elusively as everyday interpretations of world kicks back into operation. Good job or we should go mad....
But I do know that these stories and fictional characters had mysteriously travelled around the forum and even visited other forums (non- Hep C and even not related to illness at all, anything and everything from a professional dancers forum, to one for ex-Catholics who had abandoned or changed their faith (very irrelevant to own life and very random???) But through various events, I ended up aware of a lot of information and intense experiences and insights, from these various weird explorations.... and somehow got into series of distressing and unfortunate arguments with various Hep C Forum members, over trying to see our disease and experience as part of the bigger scheme of things in the world.
Sadly, first of all it seemed like I was debriefing these invented characters, and gathering very little from them that was positive or hopeful about the world and human life. (Very much at odds with a basic philosophy I have of wanting to see world clearly in it’s light and shadow aspects, but to choose to focus on optimism, joy and laughter, hope..... and the best in others rather than the worst)
But this dream seemed to insist on cold, spine stiffening look at ugly and shabby harsh side of everything. One alternative reality being had visited dancers forum and watched a video of a piece of dance theatre about Austwitzch. Another had tried to set up a scheme whereby Homeless people could call in at special internet cafe facilities and connect with mentors via a Forum project, these mentors would be from ordinary everyday life and all walks of life, and their role not to advise, help or intervene but just communicate and allow homeless people ro feel that they belong to some wider community or society outside of Street World. But one had gone on line and posted “so what so what so what?” over and over again and then never heard of again....
Yes, I have already lost big chunks of all this. Anyway, secondly, when I had fallen out with these different forum members, over all sorts of misunderstandings, I remember in the dream feeling very sad about that and not wanting to be contentious but feeling almost compelled to discuss certain experiences which were uncomfortable for self and many. (That last bit is not difficult for me to understand, or probably some who know me, in terms of a metaphor for real patterns that seem to be part of my path.)
The dream was also about Hep C itself. Two post treatment members were very involved, one I don’t have a lot of direct contact with – who suddenly wrote an article saying that however strong we are, or wish to be.... there are some people who are broken by the disease and so how do we support them? For some strange reason, although I understood where this person was coming from, and sympathised with their intent, I got side-tracked and fixated by the fact that I recognised large sections of their post as direct or slightly adapted passages from other material published elsewhere, both academic and from internet blogs. And also some sections as being entirely made up speculation about different people, although claiming to be actual reported fact. And I became very angry about this and could not get past it. The member then tried to explain that they had “altered or disguised certain stories or identities in order to protect certain people and to illustrate a valid point.” But I was so angry about the plagiarism and said that this member was a psychological vampire, sucking other people dry. Which was pretty nasty of me and that’s how I felt, angry and nasty. Then the dream became about Hep C as well. I realised I was also a vampire, of a different kind. I was SVR and the virus itself was no longer present in my system, but it had left a weird type of imprint or shadow effect which had changed my basic personality and made me driven to ...... and this bit is missing, it was something I had to do for a Great Course in the long term, but which was harming and upsetting people in the short –term. And for some reason, this made me in effect a type of vampire also, and I realised I must have been infected not only by HCV but by a vampire attack which I had forgotten due to trauma. I actually looked up Species and Classifications of Vampires in a Plant Biology book???
Well, after that I decided I would try to drive a silver stake through my own heart, so I would not be a vampire any more. I messed it up, and there was blood everywhere, and weirdly even though I was not HCV active in more, this blood infected several other people with Hep C which was horrible. So then a post –tx friend of mine on the forum stabbed me and tried to explain she didn’t want to but just had to, in order to end this crisis and in compassion for others as well as me. But it didn’t work either and I was more angry with her for what I considered damned clumsiness, rather than the actual act..... so another argument started. Which upser me, her and others greatly.... But I knew for me and several of us, that if we did not express our thoughts and experience (however discordant) we would physically get sicker and sicker. Then I woke up ....
I offer this as it seems to me to touch on many of the more tricky underlying struggles for Hep C patients and sick people generally. How do you cope with huge adjustments in lifestyle (and often enormous loss of quality of life, due to severe and chronic illness? And what is the real impact of isolation on people, over time – even self –sufficient and resilient people – since part of us is very much programmed to be social and tribal creatures? Why does so much of Hep C emotional and mental reactions seem to be tied in to quite Plutonian and dark or painful perceptions? Reminds me a bit of Jungs Theories about the Shadow Self, or social models in which some groups or cultures are seen as overly fixated on all that is “nice, comfortable and pleasant, polite” - so that some individuals will inevitably become channels for all the suppressed angers, fear, anxieties and discord of the bigger group.
What happens when a strong person (or one who wishes to be) is simply beyond tolerance and resourcefulness or no longer has further reserves to draw on? And what assumptions do we make anyway, about what it means to be “strong or weak” or “negative or optimistic” or how we experience sense of identity through illness? How do people navigate through periods of despair (even suicidal feelings) or loss of trust in self, life and other people and feeling disconnected and alienated? And also how, where and when to we experiment with and push against boundaries and unspoken agreements for how much reflection we share, how much of our experience gets really shared and discussed, and when / where / how we push against boundaries of what is safe to discuss and what is not?
And I don’t have conclusions about any of this, but do know they are real themes. And would like to dedicate this written offering to: both those who keep communication and contact between other patients to clear, safe formulas, with well defined boundaries and a structure – which may limit or result in denial in some ways, but does serve vital purpose of keeping us grounded, positive, contained and able to keep some level direction and social agreement and coherence. (Anyone who has ever felt totally mad and lost with this disease and the medications will know what I am talking about....) And also dedicate it to those who choose to push at boundaries, take the risk to be vulnerable / foolish / disaffected from others in order to make the shared journey more real and expand possibilities. Of course, also to all those who move through and around those two apparent polarities, finding our way as we do, often blindly and often getting hurt, raw and bruised along the way and sometimes causing same to others. Yet also finding the gift of real connections, relief, discovery and shared experience along the way
This is long, and possibly clouded or obscure and may not mean much to may people. But hopefully will mean something to someone, now or whenever, along the way
Hep C can really hurt a lot. And have profound impact on a person’s whole world view... at best, hopefully, there can be a way (even if it takes bloody tears) to learn to accept, adapt or even discover liberating transformative experiences (paid for dearly with a lot of struggle and pain.) But there are other times when a person very ill with it all is going to feel damaged, wounded, fear, anger and so many other heightened responses that are more difficult than a model of a cheerful and well adjusted patient. Whatever the harsher realities, it seems to me so very important to try to keep creating and allowing real opportunities for connecting with other patients and the world at large, beyond a person’s own micro-universe of Hep C total possession and warp of self and life...............
wishing you: good sleep. Resilience. courage. The relief of allowing oneself to give up, give in, let go, break down, relinquish courage – of that is what is needed. Belonging. The right to withdraw and disconnect. The compassion of others and self... simple oblivion and numbness, at times, even if just a temporary relief. Whatever it takes at any given time. Good health and hope, and if restored health is not a reality – then as many moments of flow and grounded and authentic being and ease as are possible.
Much love, eva.
Sunday, 26 December 2010
Monday, 6 September 2010
not sleeping
Awake in the night
I move through shadows, disorientation and tunnel vision in the night
The refrain I chant to reassure myself reminds me there will be light
But I am like a sleep walker, stumbling in the dark and shattered
By fragmented, ugly dreams; my mind is splintered, my life is battered
no sense of direction; tunnel vision and I am blind-sided, in the fog
my companion of the lonely hours; is depression, we call it the black dog
I know that sleep has deserted me: there will be no relief for the long test
Of courage and endurance when the jangled thoughts will not be laid to rest
The enemy has invaded the encampment, my only place of safety and retreat
The dragon slayers fear within is the longing to collapse, exhausted, in defeat
The virus that invades our bodies, our blood, our lives is the factor that is known
It’s what’s hidden in the shadows of the void that scares us when we feel most alone
It’s no dream, though often it seems sinister, unreal – it is my dark passage of the soul
I push aside the fear that there is no real recovery, believe I can be well and whole
It is my life, my health, my strength, my reality I am fighting to heal and to reclaim
They promise me there will be new beginnings when the dragon has been slain
In the dragon slayers journey through a harsh and frightening, lonely land
It is the battle in the mind that is the greatest challenge: and to believe and understand
That so much of the distortion that envelops us is not reality, but the chemistry of illusion
I move through shadows and the shadows move through me, fill me with confusion
I can’t define what is faith, strength, patience but these qualities we envoke each day
We take each heavy but determined step, trust our hearts and intuition will find the way
The strength of purpose that we discover and the human instinct to live and thrive
Is the greatest treasure we discover and keeps our visions and our vibrant spirits alive
Hold a promise in your heart; your guiding star in your mind’s eye; hope will banish fear
There is power in your vision and your determination; know that the clouds will clear
Nourish your dreams, they are like stepping stones, a pathway: hold your steady pace
The journey happening inside your soul is to a renewed and healing inner space.
(by eva day)
wishing you healing, peace of mind and sweet dreams. xx eva
I move through shadows, disorientation and tunnel vision in the night
The refrain I chant to reassure myself reminds me there will be light
But I am like a sleep walker, stumbling in the dark and shattered
By fragmented, ugly dreams; my mind is splintered, my life is battered
no sense of direction; tunnel vision and I am blind-sided, in the fog
my companion of the lonely hours; is depression, we call it the black dog
I know that sleep has deserted me: there will be no relief for the long test
Of courage and endurance when the jangled thoughts will not be laid to rest
The enemy has invaded the encampment, my only place of safety and retreat
The dragon slayers fear within is the longing to collapse, exhausted, in defeat
The virus that invades our bodies, our blood, our lives is the factor that is known
It’s what’s hidden in the shadows of the void that scares us when we feel most alone
It’s no dream, though often it seems sinister, unreal – it is my dark passage of the soul
I push aside the fear that there is no real recovery, believe I can be well and whole
It is my life, my health, my strength, my reality I am fighting to heal and to reclaim
They promise me there will be new beginnings when the dragon has been slain
In the dragon slayers journey through a harsh and frightening, lonely land
It is the battle in the mind that is the greatest challenge: and to believe and understand
That so much of the distortion that envelops us is not reality, but the chemistry of illusion
I move through shadows and the shadows move through me, fill me with confusion
I can’t define what is faith, strength, patience but these qualities we envoke each day
We take each heavy but determined step, trust our hearts and intuition will find the way
The strength of purpose that we discover and the human instinct to live and thrive
Is the greatest treasure we discover and keeps our visions and our vibrant spirits alive
Hold a promise in your heart; your guiding star in your mind’s eye; hope will banish fear
There is power in your vision and your determination; know that the clouds will clear
Nourish your dreams, they are like stepping stones, a pathway: hold your steady pace
The journey happening inside your soul is to a renewed and healing inner space.
(by eva day)
wishing you healing, peace of mind and sweet dreams. xx eva
Sunday, 5 September 2010
a medieval tale
A Medieval Tale by Eva Day
"is HCV it a cosmic jolt, a wake –up call?" my friend asks, sounding very wise
I think I know what's coming next:– is this her moment to preach and patronise?
Perhaps this is your spiritual lesson and a signal that you need to re-evaluate your path
"no," I think – perhaps the universal powers that be are just having a good laugh
At this simplistic version of a biology more complex than a half-baked new age theory
But I couldn't really be even half-arsed to discuss it with her, I was feeling bloody weary
I would feel kind of hacked off at this sort of flimsy, junk philosophy – so trite
If I wasn't drifting off in my imagination, picturing myself as a valiant medieval knight
Donning armour, mounting steed and prepared to fight the dragon – my heroic quest
So I gave her a brief answer – which was "I am familiar with the concepts you suggest:
perhaps a modern take on "god has visited this on you" sermons from the middle ages?
When people ramble on like this to Heppers, it could trigger fits of horrid riba rages ...
If I find meaning in my journey, that comes from my own perceptions and insight
Is it a karmic kick up the proverbial fundamental seat of learning? Too black and white
It's a biological reality; any meaning is my own; which you could ask me to describe:
Yes, I discover, strength, and learning in the battle with the dragon virus adversary
But this is my life, my health, my challenge – not some story from a medieval nursery
And alongside the absolute determination to find courage we often feel the fear and pain
With the enemy that invaded our blood, our bodies:, fighting to reclaim our lives again
Good lives, like you, we'd already done some living and some learning –; don't conclude
That we were somehow deficient in wisdom and awareness: I find it arrogant and crude
But I didn't get too agitated because I think she doesn't understand – but meant well
So I told her; I do often have weird images in my brain, like Dante's Inferno: it is hell
But not demonic or angelic visitations ... they're chemically induced total brain fucks
if this is some kind of spiritual experience ( not just scrambled circuits) – then it sucks!
When folk tell you their pet theories; ask them to imagine how it is to be sick and tired
And listening to a load of utter bollocks: it really does not make you feel inspired!
by eva day in a spirit of irony and (mostly) good humour! to distract you whenever they start telling you where it's at - instead of finding a way to ask and to listen. or when nothing makes any god-damned sense any way ..... good journeying to you. love eva xx
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"is HCV it a cosmic jolt, a wake –up call?" my friend asks, sounding very wise
I think I know what's coming next:– is this her moment to preach and patronise?
Perhaps this is your spiritual lesson and a signal that you need to re-evaluate your path
"no," I think – perhaps the universal powers that be are just having a good laugh
At this simplistic version of a biology more complex than a half-baked new age theory
But I couldn't really be even half-arsed to discuss it with her, I was feeling bloody weary
I would feel kind of hacked off at this sort of flimsy, junk philosophy – so trite
If I wasn't drifting off in my imagination, picturing myself as a valiant medieval knight
Donning armour, mounting steed and prepared to fight the dragon – my heroic quest
So I gave her a brief answer – which was "I am familiar with the concepts you suggest:
perhaps a modern take on "god has visited this on you" sermons from the middle ages?
When people ramble on like this to Heppers, it could trigger fits of horrid riba rages ...
If I find meaning in my journey, that comes from my own perceptions and insight
Is it a karmic kick up the proverbial fundamental seat of learning? Too black and white
It's a biological reality; any meaning is my own; which you could ask me to describe:
Yes, I discover, strength, and learning in the battle with the dragon virus adversary
But this is my life, my health, my challenge – not some story from a medieval nursery
And alongside the absolute determination to find courage we often feel the fear and pain
With the enemy that invaded our blood, our bodies:, fighting to reclaim our lives again
Good lives, like you, we'd already done some living and some learning –; don't conclude
That we were somehow deficient in wisdom and awareness: I find it arrogant and crude
But I didn't get too agitated because I think she doesn't understand – but meant well
So I told her; I do often have weird images in my brain, like Dante's Inferno: it is hell
But not demonic or angelic visitations ... they're chemically induced total brain fucks
if this is some kind of spiritual experience ( not just scrambled circuits) – then it sucks!
When folk tell you their pet theories; ask them to imagine how it is to be sick and tired
And listening to a load of utter bollocks: it really does not make you feel inspired!
by eva day in a spirit of irony and (mostly) good humour! to distract you whenever they start telling you where it's at - instead of finding a way to ask and to listen. or when nothing makes any god-damned sense any way ..... good journeying to you. love eva xx
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Saturday, 28 August 2010
"on being reasonable"
ON BEING “REASONABLE!”by Eva Day on Saturday, 17 July 2010 at 01:58
so in a moment of flippant nonsense I dedicate this to all this helpful doctors we have all met along the way and may we all keep a hold of our humour
I went to see a specialist: but “HCV is not that bad” he stated
And then look completely baffled when I got quite agitated
I’m on the edge already, I yelled- with no sense of proportion
-I grabbed his pen and on my notes, I scribbled the word: Caution!
I am happy to report that the virus is now undetected but: beware
I am losing all rationality and patience, as well as lots of hair
Combination therapy and the sides have driven me up the wall
Making both my skin and - as time slows down – the seconds crawl
And anyway, so many medics just talk bollocks and have no real concern
maybe you don’t know much about Hep C – but you don’t seem to want to learn
Zero tolerance (of aggressive patients) says the notice on the board
But I’ve no more patience left for stupid doctors, so put that on my record.
Zero tolerance from me when arrogant practitioners get snooty
So, once when feeling sick – I leaned forward and chucked up on his desk. That was a beauty!
(by eva day)
so in a moment of flippant nonsense I dedicate this to all this helpful doctors we have all met along the way and may we all keep a hold of our humour
I went to see a specialist: but “HCV is not that bad” he stated
And then look completely baffled when I got quite agitated
I’m on the edge already, I yelled- with no sense of proportion
-I grabbed his pen and on my notes, I scribbled the word: Caution!
I am happy to report that the virus is now undetected but: beware
I am losing all rationality and patience, as well as lots of hair
Combination therapy and the sides have driven me up the wall
Making both my skin and - as time slows down – the seconds crawl
And anyway, so many medics just talk bollocks and have no real concern
maybe you don’t know much about Hep C – but you don’t seem to want to learn
Zero tolerance (of aggressive patients) says the notice on the board
But I’ve no more patience left for stupid doctors, so put that on my record.
Zero tolerance from me when arrogant practitioners get snooty
So, once when feeling sick – I leaned forward and chucked up on his desk. That was a beauty!
(by eva day)
Monday, 23 August 2010
an ode to my remote control ......
Most excellent gadget and pal
For a sofa –bound, on treatment gal
Watching the telly numbs out my brain
So I trance out with re-runs of Frasier, again
I've dumbed down and daytime tv is a boon
I'm catching up with Jonathon Ross, very soon
Oprah and Ellen and guests having a chat
2 phat ladies, phat phat farm, phat bikers, celebrity phat
House renovations that ended in hell
And the heat's on in the kitchen with top chefs who yell.
Desperate housewives, loose women, and sex in the city
And Stephen on QI being terribly witty
Oh and jo brand is funny and phat
(yup, big it up -- we're back to that)
I'm flicking the channels,
Finding game shows and panels
Of celebrity judges who give a chance
To talented street kids and dogs who can dance
And
You may think I've lost the plot
And wonder why I do not
Get up off the sofa
-I've become such a loafer
Get out, get a life, turn off the set
Ok, so; you're not on treatment, I bet
by eva day
For a sofa –bound, on treatment gal
Watching the telly numbs out my brain
So I trance out with re-runs of Frasier, again
I've dumbed down and daytime tv is a boon
I'm catching up with Jonathon Ross, very soon
Oprah and Ellen and guests having a chat
2 phat ladies, phat phat farm, phat bikers, celebrity phat
House renovations that ended in hell
And the heat's on in the kitchen with top chefs who yell.
Desperate housewives, loose women, and sex in the city
And Stephen on QI being terribly witty
Oh and jo brand is funny and phat
(yup, big it up -- we're back to that)
I'm flicking the channels,
Finding game shows and panels
Of celebrity judges who give a chance
To talented street kids and dogs who can dance
And
You may think I've lost the plot
And wonder why I do not
Get up off the sofa
-I've become such a loafer
Get out, get a life, turn off the set
Ok, so; you're not on treatment, I bet
by eva day
Thursday, 19 August 2010
Charged Up on Treatment - anacronym poem
C - Confused, as I have brain fog which makes me loose the plot
I stop mid-sentence and forget what I was saying, quite a lot
watch tv for ten minutes and its just strange words in a jumble
or ask a question and no-one understands because I just space out and mumble
H -Hostile: I used to be quiet friendly, now I find people quite annoying:
I get so little pleasure from anything- but have to watch them enjoying!
And when they just WON’T understand that I am bloody sick and tired;
Or they talk crap about Hep C and everything: & it gets me really wired
A - Anxious. feeling jittery and on edge as if I couldn't do another day
can’t say exactly what ‘s the worry; but feel like normal life is slipping fast away :
let go of control, just rest, recover, is advice I’m often given; very wise -
but struggling daily with every simple task, my tension, then, is no surprise
R - Raging. There are buttons to be pushed in me: and those damned fools,
press them all! and expect me to be reasonable, according to the social rules
I feel like there’s a constant stone inside my shoe - and my mind is full of grit
I can hold back, I guess, but there’s a couple of bastards I’d quite like to hit!
G - Grumpy; and it’s no joke: like one of the seven dwarfs, the one who’s cross
My sense of humour’s gone, and patience, along with every other bloody loss
You think I’m edgy, snappy, moody, quite difficult to be around
so would you be, if you were itchy: my head hurts with every sound
E - Emotional. I’ve done the classic laughing / crying mood swing
And felt ten times more intense in response to every little thing
I’m tearful, weepy, sobbing pitifully at a sad film on the telly
Or I’m full of resentment and insecurity, a weight inside my belly
D - Depressed. I know I’ve got to take care of myself, and set small goals
But sometimes think what is the point? often falling into those black holes
I can’t remember when I last had fun, or felt that warmth and glow
Just doing simple tasks, step by step, one day at a time is all i know
U - Unhinged : no boundaries. forget normal social codes, conventions
I get intense. no filters, trying to explain things: messily - but with good intentions.
& such odd thoughts which are disjointed, bizarre and quite demented
resurrecting ghosts I thought had gone : but brooding on past hurts I resented.
P - Paranoid. Uncomfortable, awkward, everywhere I go, as if I don’t belong
Yet socially I used to be so confident , gregarious, bubbly and strong
Now I hear hidden spitefulness in simple statements or an off the cuff remark
Which takes me to suspicion, over analysing, and to places in me very dark.
So there we are then - anything for a bit of a laugh eh!? :wink: :lol: a bit of dark humour I s'pose; so where's the coping strategies for people going loopy on tx?!! I will come back later and post solutions - also rhyme/ anacronym - and inspiration.
(errm, by the way, in case anyone's worried: I have exagerrated a couple of things, and borrowed from other people;s experience; for the purpose of rhyming and artistic license: so it's ok ...... I don't need talking down right now!)
I stop mid-sentence and forget what I was saying, quite a lot
watch tv for ten minutes and its just strange words in a jumble
or ask a question and no-one understands because I just space out and mumble
H -Hostile: I used to be quiet friendly, now I find people quite annoying:
I get so little pleasure from anything- but have to watch them enjoying!
And when they just WON’T understand that I am bloody sick and tired;
Or they talk crap about Hep C and everything: & it gets me really wired
A - Anxious. feeling jittery and on edge as if I couldn't do another day
can’t say exactly what ‘s the worry; but feel like normal life is slipping fast away :
let go of control, just rest, recover, is advice I’m often given; very wise -
but struggling daily with every simple task, my tension, then, is no surprise
R - Raging. There are buttons to be pushed in me: and those damned fools,
press them all! and expect me to be reasonable, according to the social rules
I feel like there’s a constant stone inside my shoe - and my mind is full of grit
I can hold back, I guess, but there’s a couple of bastards I’d quite like to hit!
G - Grumpy; and it’s no joke: like one of the seven dwarfs, the one who’s cross
My sense of humour’s gone, and patience, along with every other bloody loss
You think I’m edgy, snappy, moody, quite difficult to be around
so would you be, if you were itchy: my head hurts with every sound
E - Emotional. I’ve done the classic laughing / crying mood swing
And felt ten times more intense in response to every little thing
I’m tearful, weepy, sobbing pitifully at a sad film on the telly
Or I’m full of resentment and insecurity, a weight inside my belly
D - Depressed. I know I’ve got to take care of myself, and set small goals
But sometimes think what is the point? often falling into those black holes
I can’t remember when I last had fun, or felt that warmth and glow
Just doing simple tasks, step by step, one day at a time is all i know
U - Unhinged : no boundaries. forget normal social codes, conventions
I get intense. no filters, trying to explain things: messily - but with good intentions.
& such odd thoughts which are disjointed, bizarre and quite demented
resurrecting ghosts I thought had gone : but brooding on past hurts I resented.
P - Paranoid. Uncomfortable, awkward, everywhere I go, as if I don’t belong
Yet socially I used to be so confident , gregarious, bubbly and strong
Now I hear hidden spitefulness in simple statements or an off the cuff remark
Which takes me to suspicion, over analysing, and to places in me very dark.
So there we are then - anything for a bit of a laugh eh!? :wink: :lol: a bit of dark humour I s'pose; so where's the coping strategies for people going loopy on tx?!! I will come back later and post solutions - also rhyme/ anacronym - and inspiration.
(errm, by the way, in case anyone's worried: I have exagerrated a couple of things, and borrowed from other people;s experience; for the purpose of rhyming and artistic license: so it's ok ...... I don't need talking down right now!)
Monday, 16 August 2010
the debris and junk of HCV
From time to time, Heppers have a dialogue with each other about how much they have learned about themselves and life, on treatment.
It amazes and touches me because often the people who say this are often already clearly well –rounded, aware individuals with a bit of life experience under their belts and a thoughtful approach to this business of being human ..... and being on planet earth.
A dragon slayer may describe having found reserves of strength, or patience, of courage which they never knew they had. Buttons get pushed – because of the way that Hep C can affect so many aspects of our lives; work, relationships, attitudes to social issues, compassion for self and others..... So sometimes people discover growth points, personal issues that they want to resolve, blocks that need release .....
A genuine and profound experience, and god knows (and we all know) hard-won indeed through the gruelling slog and the many losses.
Certainly I’ve had huge learning curves and many insights (though probably more questions than conclusions)
However: other times I have waded wearily through masses of sheer mental junk and total dissonance...... I remember wrestling hard with one particular theme over a period of time, wondering if I had discovered some deep-seated complex or personality flaw which might need many therapeutic hours and much contemplation to resolve ....
Until the day came when I realised that it was a random fixation – didn’t really have a great deal of content or a marvellous treasure to be yielded up, should I sift through the crap and murk with sufficient dedication and humility ....... in other words, managing the process rather than investing too much in the content.
Sure, sometimes there have been pearls to be found. Other times I have just found myself obssessing on a theme because it happened to come up at a given time of high levels of general disruption .... and now think it could have been anything, really.
Much of what happens within in hearts and minds and souls through illness may be the unfolding of an extraordinary journey of triumph over adversity and of personal growth. At other times, a great deal of it is sheer dissonance and chemical –induced scrambled circuits ..... letting go of any great compulsion to always figuring out the difference may be a key; and trust that our sould journey will unfold in any event -
I suppose I would say to myself and others: whatever the magnifying glass is focused on at any given time; don’t take it all too personally.
This may not always be who you are ..... but HOW you are, right now ......
The patience, the courage, the compassion, the sheer determination, is unfolding in you all the time – whether you can figure it all out or not. But we do not have to pass any kind of divine, cosmic or psychic test .... all we need do is our best ...
We will not always feel wiser, stronger . Often we may feel diminished ..... Maybe that’s a really special kind of strength, though; when you absolutely have not one reserve left and are completely blind-sided .... yet somehow you keep on going. Find a way to communicate – even if it’s just one word – and to breathe – and even to just zone out. And to do each day .....
Extraordinary and inspiring enough itself, I think; that even when we have no sense of inspiration at all, (and no capacity for distraction) the human spirit and instinct for survival and for life will somehow drive us on: even if we do feel like we are stumbling blind-folded through the junk yards of life
When you all arrive in a better place ... I hope indeed that you will find you have gathered some treasures along the way. Naming them may be meaningful - but the most important things is living them.
Much love to all ...
Eva day
It amazes and touches me because often the people who say this are often already clearly well –rounded, aware individuals with a bit of life experience under their belts and a thoughtful approach to this business of being human ..... and being on planet earth.
A dragon slayer may describe having found reserves of strength, or patience, of courage which they never knew they had. Buttons get pushed – because of the way that Hep C can affect so many aspects of our lives; work, relationships, attitudes to social issues, compassion for self and others..... So sometimes people discover growth points, personal issues that they want to resolve, blocks that need release .....
A genuine and profound experience, and god knows (and we all know) hard-won indeed through the gruelling slog and the many losses.
Certainly I’ve had huge learning curves and many insights (though probably more questions than conclusions)
However: other times I have waded wearily through masses of sheer mental junk and total dissonance...... I remember wrestling hard with one particular theme over a period of time, wondering if I had discovered some deep-seated complex or personality flaw which might need many therapeutic hours and much contemplation to resolve ....
Until the day came when I realised that it was a random fixation – didn’t really have a great deal of content or a marvellous treasure to be yielded up, should I sift through the crap and murk with sufficient dedication and humility ....... in other words, managing the process rather than investing too much in the content.
Sure, sometimes there have been pearls to be found. Other times I have just found myself obssessing on a theme because it happened to come up at a given time of high levels of general disruption .... and now think it could have been anything, really.
Much of what happens within in hearts and minds and souls through illness may be the unfolding of an extraordinary journey of triumph over adversity and of personal growth. At other times, a great deal of it is sheer dissonance and chemical –induced scrambled circuits ..... letting go of any great compulsion to always figuring out the difference may be a key; and trust that our sould journey will unfold in any event -
I suppose I would say to myself and others: whatever the magnifying glass is focused on at any given time; don’t take it all too personally.
This may not always be who you are ..... but HOW you are, right now ......
The patience, the courage, the compassion, the sheer determination, is unfolding in you all the time – whether you can figure it all out or not. But we do not have to pass any kind of divine, cosmic or psychic test .... all we need do is our best ...
We will not always feel wiser, stronger . Often we may feel diminished ..... Maybe that’s a really special kind of strength, though; when you absolutely have not one reserve left and are completely blind-sided .... yet somehow you keep on going. Find a way to communicate – even if it’s just one word – and to breathe – and even to just zone out. And to do each day .....
Extraordinary and inspiring enough itself, I think; that even when we have no sense of inspiration at all, (and no capacity for distraction) the human spirit and instinct for survival and for life will somehow drive us on: even if we do feel like we are stumbling blind-folded through the junk yards of life
When you all arrive in a better place ... I hope indeed that you will find you have gathered some treasures along the way. Naming them may be meaningful - but the most important things is living them.
Much love to all ...
Eva day
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