Monday, 27 December 2010
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.
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
Sunday, 26 December 2010
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.
Monday, 6 September 2010
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
"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
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
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
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
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
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 ...
Tuesday, 27 July 2010
He nods wisely. “Nihilism” he says. “Very common experience with chronic illness and isolation.”
Various snippets of black humour and darkly comedic images run through my mind, and we share a laugh about them. Aliens and black holes and “mind the gap” on the London Underground..... I am glad my psychiatrist can be flexible and humorous, and that i still have some ability to imagine and to communicate. But my chest, my stomach, my brain hurt with the fear that beyond illness I shall never rebuild a real sense of connection with life, self, people and the world again .....
That I will always feel like a shadow, or a phantom. I shall have to haunt the edges of my own former vibrant life....
I know this is not the absolute truth, but I don’t know (at this time) that it’s not real.....
"Nihilism is not only despair and negation, but above all the desire to despair and to negate." (wrote Albert Camus.)
I remember telling someone, once, that I had descended from depression to despair. A place where you would want to obliterate yourself and everything;......... if you could actually be bothered to get off the sofa. Of course, sensible mental health awareness demands that if we get to this level of weary, struggle: we take action, get some help.
Which, I did. And do. So I hold on and I keep finding ways to make each day meaningful, and to create a sense of purpose. Commmunicate with others. Perform small tasks, achievements. All good anchors. And there’s the anti-depressants, of course. Not that I am saying that all moments of existential angst (and tx struggles) require medication: but mine is prolonged and profound enough to necessitate that.
Anyway, what makes us feel at home with ourselves? Maintain identity? Just that simple feeling of being and of some flow in life (so easy to take for granted when it’s present, so painfully raw and harsh when it is absent for long periods of time.)
I suppose it’s different for everyone but much of it will be down to what we are familiar with – our way of doing things and habitual routines over time. Having been of a bit of a philosophical nature (and frequent over-thinker) since quite a young age – I long ago got past believing that my identity was formed by or dependent on social roles. (Mother, daughter, professional title, Helper, Best Friend and what you will .......)
What I have discovered though is how much of my identity was linked to doing ..... the activities and involvements of everyday life. That’s the habitual aspect of our particular individual MO’s. So when we are ill and totally flat on our backs and incapacitated for long (long) periods of time - what happens to one’s sense of functioning and being part of the world and of having creative choices ......?
You have to be increasingly and extraordinarily resourceful and inventive (over and over again) to maintain that through chronic illness.
I was a person who DID a lot; aside from work and the mechanics of life: gardening; hosting lovely, relaxed dinner parties; arts, crafts, , festivals; exploring the world.....
What happens to your mind – and your feeling of “this is me, and this is my life, which I shape” when you are lying on the couch for days on end and staring at nothing? When even the capacity to distract yourself with sedentary activities, such as reading or watching tv, is gone.....?
Sometimes I have discovered such profound and subtle levels of boredom that I was convinced if I took it to one more degree (one more hint shade of grey) that I might have some extraordinary mystical experience of being-and-not being.
I just learned how to keep going, moment by moment, breath by breath, day by day. And to appreciate: relief gained when sleep (erratically) came along; the lifeline of being able to communicate with others via the written word and the moments when my mind did click into engaging with something for a while ....
How lucky I am to have been able to continue to write (sometimes) and to have people who have read and responded to what I have written.. Otherwise, like Alice I might be concerned that:
it might end, you know,' said Alice to herself, `in my
going out altogether, like a candle. I wonder what I should be
like then?' And she tried to fancy what the flame of a candle is
like after the candle is blown out, for she could not remember
ever having seen such a thing.
with love, eva day.
Monday, 26 July 2010
this quiz is deisgned to help you evaluate and manage your treatment:
1) What is your basic attitude to treatment?
a) “Die, fekkin virus, die!” (DFVD)
c) Transcendent./ Deliberately Oblivious./ ohhhhhmmmm...
d) What? Huh? I thought I was on youtube?
e) I, eat research documents for breakfast and I am a Trekky as well
2) Which metaphor do you prefer?
a) Dragon slayers, of course. (DFVD, etc)
b) This is an effin roller –coaster. Why am I upside down and puking? Or have I been shipwrecked?
c) travellers in the wilderness on a powerful journey pass the duchy to the left hand side
d) Oh god, the dogs been sick all over my feet and i had cornflakes for brekkie and I just puked them up all over the dog
e) I don’t.
3) What triggers riba rage?
a) My boss, my next door neighbour, the next-door neighbour’s dog, my best friend, brushing my hair, my best friend;s dog, any sound whatsoever and this effin quiz
b) I can’t remember, I just ripped off my own head and ate it!
c) Well I would get wired up but I am just too knackered... am living on the sofa. No, the ceiling. Ok, I am actually bouncing between the two
d) I suppose so I think i read about that somewhere ....errm not sure if I have pressed the right button.....
e) Ribaviran causes riba rage. Although actually, it’s probably often down to the interferon....... so the term is something of a misnomer.....
4) My doctor is :
a) Probably hiding under the desk cos I’m on my way in to the surgery. Be afraid ....
b) Chained to my bedpost
c) Made of quartz crystal and transmitting alien messages
d) AWOL. And so am I ......
e) Doing his homework for an exam I have set for him........
MOSTLY Absent. none of this bears any relation to the answers given i have no idea what i am talking about and you no longer remember what is supposedly normal – but you will get through.
MOSTLY Bonkers. cos you reckon it’s the only way to be. you have an invisible friend who sometimes writes messages on your behalf......
MOSTLY Comatose. your blanket is now a sacred relic and the remote control is symbiotically experiencing all this along with you
MOSTLY Don’t Know. You should skip D and go straight to E: you are in the middle of a white noise zone. Hold on to your towel and everything will be ok....
MOSTLY Elvin. Your name is Elvin and you are the invisible friend of another hepper, earlier mentioned. Although this can be confusing; you do have a very balanced attitude in between the fits of hysteria ...
MOSTLY eefFFed. Yup!! That just says it all..........
NOTE; THE MAKER OF THIS QUIZ HAS LEFT THE PLANET AND ANY RESEMBLANCE TO REAL LIFE IS PURELY COINCIDENTAL. ANY REPLIES SHOULD BE ADDRESSED TO
ELVIN AND FRIENDS, THE LOST IN TRANSLATION SOCIETY, . BOX: HCV 1A OMG.
I feel that I have stepped out of everyday life and into another zone – beyond the reach or understanding of many friends and family. People begin to quietly drift away. Others step forward briefly and offer advice, wisdom (maybe platitudes) which sound to me like full stop or an avoidance, rather than a real dialogue. Of course I have to accept that. If people outside of this experience cannot connect and need to distance themselves, then banging on their door or demanding greater awareness will only cause further fear and discomfort – for me perhaps even more than for the other person....
So it can get very lonely. Who am I now? That’s the lost voice chanting inside, for many of us. So much is stripped away – depending on how hard the symptoms hit you at different times. we may loose;
our working life and career; family support and interaction; friendship, companionship, community and social life; primary relationships, even a marriage; our appetite and our hair; our mobility and opportunity for simple leisure pursuits and past-times; our concentration, comprehension and even simple ability to distract ourselves (from pretty constant discomfort) and our sense of perspective, sanity and proportion.
Anchors, familiar routines and interactions, any basic sense of flow or rythm in life – all gone. We experience a feeling of disintegration, alienation, loss, loneliness. And still, within that empty space, we need to somehow find the courage and resourceful to remain positive, brave, optimistic. As the rest of the world will often tell us – on those days when we do take the risk to reach out and tell someone else how it is.
A dismissive and curt “you’ll come through ......” from a friend or family member who you thought was a special part of your life; followed by months of silence and their conspicuous absence. I guess we all know the hurt and loneliness of that one. If only that person could for a moment imagine the difference it might have made if they had simply been able to say:
“I am listening. “ I don’t know how to help but I do care.” Or “I am sorry I don’t always know how to respond ...... what do you need right now?”
And there are times – for those of us actively in touch with other Heppers – when even contact people within the Hep C Community may make us feel lonely, confused, discordant. Generally, with all the good and supportive intention between HCV patients, this is usually down to crossed wires rather than deliberate bloody-mindedness. And to the reality that we’re all sick and struggling and with scrambled circuits. (actually, given the stressors, perhaps it’s a testament to the strength of this community that we don’t fall out more often....?-)
Illness and treatment has been a very isolated experience for me and that isolation has affected me in so many ways. I am sure many others will understand this. For a general self-sufficient person – I certainly have discovered that there is another very fundamental instinct within us that needs people, community, company and belonging.
Unfortunately, through this tough haul battling the virus; it is the nature of the beast that we are also going to become confused, disrupted in our thinking and ability to interact, and just plain mixed-up. So this may result in times when we alienate others.
In my case, generally I have had pretty good social skills and am a sociable being my nature. Never in my life have I experienced such a time of discord and loss of harmony in my relations with others, individually, and with the world at large. A fair amount of it is down to the perversities and complexities of human nature; some of it is down to my own agitation and emotional disruption on treatment. Sometimes I have confused or pissed off other people (with no intention to do so.) Or at other times, I am intense and full of highly charged psychic energy and some people just can’t handle me. On one level I am totally accepting and detached about this and on another level it is sll very painful and I have no real insight or conclusions other than it demands huge levels of absolute faith on a daily basis that:
*You are not loosing your spirit and basic identity; this too will pass...
* you forgive yourself and accept your struggles as part of the experience and not a reality of who you basically are
* you may re-evaluate how you understand your place in the world, your relationships and friendships, and even your sense of trust in life, self and others and this process may feel like your heart is open and raw and wounded. But you will heal if you believe you can and ultimately you can forgive: other and – again – yourself.
* you choose to believe that you can have the grace to look honestly at the harshness of life at times, yet still hold on to the hope and the beauty and the kindness where it is given; and to hold on to each moment of that to nuture you.
* I am not my illness; I am not my symptoms; I am not my pain or anger or confusion. I am simply me, living through a huge challenge and doing my best each step of the way. Along this path, I may have been hurt, and perhaps hurt or confused others at times. We are all human with all our strengths and weaknesses. we can choose to approach each day as a potential new beginning and to believe in community and kindness.
With love, eva (eva day)
Friday, 30 April 2010
BEFORE I CAME TO SEE YOU FOR MY FIRST APPOINTMENT, I HAD ALREADY BEEN ILL FOR A LONG TIME..... I WAS TIRED, AND ACHING, AND NAUSEAUS – AND WITH NUMEROUS UNEXPLAINED SYMPTOMS. I DIDN’T KNOW I HAD HEPATITIS C. I DIDN’T EVEN KNOW WHAT IT WAS. BUT IT HAD CHANGED MY WORLD – ERODED MY QUALITY OF LIFE IN SO MANY WAYS. AND I NEED YOU TO UNDERSTAND THAT THROUGH ALL THAT TIME, WHEN I HAD BEEN STRUGGLING SO MUCH WITH MY HEALTH, I HAD ALREADY SEEN MANY DIFFERENT DOCTORS AND HEALTH PRACTITIONERS. MANY OF WHOM HAD SENT ME AWAY, TELLING ME IN EFFECT THERE WAS NOTHING WRONG WITH ME ... OR IT WOULD PASS... OR PERHAPS, THAT I WAS NEUROTIC.
SO I HAVEN’T ARRIVED TODAY WITH A BLANK CANVAS. I AM ALREADY FEELING ANXIOUS, AND YES, A LITTLE LACKING IN CONFIDENCE OF MY OVERALL HEALTH CARE.
PLEASE UNDERSTAND, THOUGH, THAT I CARE ABOUT MY LIFE AND MY HEALTH. I WANT TO GET WELL: FOR ME, FOR MY FAMILY AND FRIENDS, MY WORK, AND ALL THE THINGS THAT MAKE FOR A FULL AND ACTIVE LIFE. SO WHEN I ASK YOU QUESTIONS, IT IS BECAUSE I WANT TO LEARN AND TO KNOW HOW TO MANAGE MY TREATMENT – WITH YOUR HELP – SO THAT I CAN MAXIMISE MY CHANCE OF CLEARING THIS HORRIBLE VIRUS.
PLEASE REALISE THAT I DON’T HAVE A NOTEBOOK IN ORDER TO READ FROM A CHECK-LIST INTENDED TO CHALLENGE YOU AND YOUR EXPERIENCE. MY CHECKLIST IS TO HELP ME GATHER MY THOUGHTS – AND TO ENABLE BOTH OF US TO WORK WELL TOGETHER AND BE SURE WE HAVE CLARIFIED ESSENTIALS. I AM JUST FINDING OUT ABOUT HEPATITIS C.AND I NEED YOU TO KNOW THERE'S BEEN A PERIOD OF A LOT OF ADJUSTMENTS AND A HUGE LEARNING CURVE. THROUGHOUT MY TREATMENT, BECAUSE I AM SICK, AND MY CONCENTRATION IS AFFECTED, I ASK YOU TO BEAR WITH ME, IF I SOMETIMES NEED TO REINFORCE THE FACTS OR ASK FOR FURTHER EXPLANATIONS.
I REALISE FROM YOUR RESPONSES THAT SOMETIMES, YOU MIGHT THINK THAT I AM TRYING TO PIECE TOGETHER TOO MUCH SPECIALISED KNOWLEDGE. SOMETIMES, WITH VARIOUS MEDICS, IT SEEMS AS IF IT’S REGARDED AS INAPPROPRIATE,EVEN ODD BEHAVIOUR, WHEN I WANT TO ASK ABOUT AND PROPERLY UNDERSTAND MY OWN BODY, MY BLOOD, MY TREATMENT. I ASK THAT EVEN IF I SOMETIMES MISUNDERSTAND CERTAIN THINGS – YOU WILL PLEASE BE PATIENT, AND LISTEN AS I PIECE THINGS TOGETHER. IN WHAT I SAY, THERE MAY BE NEW LEARNING AND MATERIAL WHICH IS USEFUL TO YOUR PRACTICE, BOTH IN WORKING WITH ME AND FOR YOUR OTHER PATIENTS TOO.
I WOULD LIKE YOU TO KNOW THAT WHEN I RESEARCH MATERIAL, THROUGH SUPPORT GROUPS, AND ORGANISATIONS OR THE WEB AND INTERNET FORUMS, I AM NOT OBSSESSIVE OR UNSTABLE. I AM LINKING UP WITH OTHER PATIENTS WHO INCREASINGLY UNDERSTAND WHAT A POSITIVE AND REAL DIFFERENCE IT CAN MAKE TO SHARE EXPERIENCE AND INFORMATION. WE ARE BEING PROACTIVE AND HELPING OURSELVES AND EACH OTHER – AND HOPING TO ENCOURAGE GREATER UNDERSTANDING OF THIS DISEASE. BOTH FOR OURSELVES AND ONE ANOTHER, THE GENERAL PUBLIC AND THE HEALTH SERVICE. PLEASE DON’T ASSUME THAT I AM SO NAIVE AND UNAWARE THAT I AM GOING TO SOAK UP ANYTHING I AM FED, VIA THESE OTHER SOURCES, WITHOUT DISCUSSION OR DISCRIMINATION. I AM SENSIBLE ENOUGH TO COME AND ASK QUESTIONS AND CROSS-REFERENCE. AND YET I STILL DO APPRECIATE IT IF YOU GIVE ME FURTHER GUIDELINES OR EXPLANATIONS.
AND WHEN YOU DON’T KNOW THE ANSWER, I APPRECIATE IT WHEN YOU TELL ME SO, AND OFFER TO CHECK IT OUT FOR ME – OR POINT ME IN THE RIGHT DIRECTION. IF YOU LISTEN AND BE PATIENT WHEN I STUMBLE – BECAUSE, AGAIN, REMEMBER, HEPATITIS C AND TREATMENT ERRATICALLY AFFECTS MY CONCENTRATION – SOMETIMES, I MAY HAVE DISCOVERED KEY FACTS ABOUT NEW RESEARCH, OR TREATMENT MANAGEMENT, WHICH COULD BE HELPFUL TO YOU AND YOUR CLINIC.
OF COURSE I RECOGNISE HOW MUCH YOU KNOW ABOUT HEPATIS C AND I REALISE YOU HAVE EXPERIENCE, AND GUIDELINES TO FOLLOW. I HOPE YOU CAN RESPECT ME, TOO, AND REMEMBER THAT I AM NOT THE SAME AS EVERY OTHER HCV PATIENT WHO YOU SEE. I NEED YOU TO KNOW A LITTLE BIT ABOUT MY PERSONAL CIRCUMSTANCES, MY REAL LIFE AND DAY-TO-DAY SITUATION AND HOW IT IS AFFECTED. ALSO HOW MY CIRCUMSTANCES MAY AFFECT MY TREATMENT. IT MAKES A DIFFERENCE WHEN YOU USE MY NAME, AND REMEMBER SOME SMALL, PERSONAL DETAILS ABOUT MY LIFE, WHICH I HAVE TOLD YOU.
PLEASE ASK ME HOW I AM AND WHO CARES FOR ME. I NEED YOU TO KNOW WHAT IS MY SUPPORT NETWORK – OR LACK OF ONE. AND TO HAVE SOME PICTURE OR HOW MUCH I AM STRUGGLING TO CONTINUE WORK, OR COPE WITH THE DISAPPOINTMENT OF STOPPPING WORK. DO YOU KNOW IF I AM BECOMING ISOLATED? IF MY FAMILY ARE STRUGGLING TO COPE WITH THE TREATMENT AND IT’S EFFECT ON ME? PERHAPS I HAVE NOT KNOWN HOW TO EXPLAIN THE LEVEL OF DEPRESSION OR MOOD SWINGS THAT ARE AFFECTING ME – OR JUST HOW HARD IT IS TO FEEL AFRAID TO TELL CERTAIN PEOPLE IN MY LIFE ABOUT THIS DISEASE
AND ESPECIALLY, WHILE I GO THROUGH TREATMENT, I NEED YOU TO BE SOMEONE I CAN TALK TO AND CAN TRUST. SOMEONE WHO UNDERSTANDS THAT I DO THIS DAY BY DAY AND WEEK BY WEEK AND SOME DAYS ARE TOUGHER THAN OTHERS. THAT SOMETIMES I FEEL AFRAID, ANGRY, DISCOURAGED OR FRUSTRATED - AND JUST VERY, VERY TIRED.
I NEED TO FEEL COMFORTABLE WHEN I COME AND SEE YOU – NOT WARY AND WORRIED. COMFORTABLE THAT YOU ARE AN ALLY AND WILL HELP MAKE THE JOURNEY AS SMOOTH AS POSSIBLE FOR ME. PLEASE RECOGNISE THAT I AM FINDING THE SIGNPOSTS AND THE TRAVELLING COMPANIONS ALONG THE WAY – AS WELL AS DOING THE LONELY STRETCHES WITH AS MUCH COURAGE AND DETERMINATION AS I CAN. WHEN YOU HELP MAKE THE ROAD AHEAD MORE CLEAR – WE CAN BOTH KNOW THAT IT IS ME THAT HAS TO TAKE EACH STEP. THANKYOU.
(written by eva day.)
Sunday, 18 April 2010
In any case, they feature prominently in my day, after I discovered them last night, in the bottom of my hospital overnight bag.
Wednesday, I did my interferon jab in the morning, and went off to the hospital for a minor operation, expecting to be home that evening. But the last time I had day surgery, there were slight complications afterwards, and they ended up keeping me in overnight. Of course,then, I didn't have any personal items with me, and it was a bit annoying. So, via the perverse laws of Sod, I figured that if I did have an overnight bag with me this time, then all would go well, and of course, I wouldn't need it. This worked - ha! Sod was foiled! I came home, was hellish to be around for about an hour, apparently, and then settled down back on the sofa again, to rest up and recover. Spare toiletries, pajamas, etc, have remained in the bag, unpacked for the last few days. Shocking, isn't it?! You would be appalled at how shoddy I am being just now.
Yesterday evening (Saturday) after being miserable and at odds with myself and the world for much of the day, while my daughter zoned out on mobile phone games, I was sprawling pathetically on the sofa feeling thouroughly sorry for myself. I finally decided to rally and set a few small goals, to arrive at some sense of achievement and to haul myself out of the pits of a foul mood. A little bit of pottering and clearing up was a start; whatever could be done one-handed, as left hand is in splint and sling.
Time to put away bits and pieces that were still in the hospital bag, which was dumped on top of a pile of un-sorted laundry. Emptying the bag, I found, at the bottom, a packet of pills. They are called Lofepramine, and are a sort of reddish-purple colour, as mother and daughter discussed. They are my anti-depressants. I took them down to the kitchen, to put away with the rest of my extensive pharmacy stock. Realising it wass nearly time to take my evening medications anyway - only 20 minutes off regular time - I decided to have a banana and a bit of toast, and take them early.
So I grabbed my pill box (all very well organised) and noticed that in each compartment, marked for the days of the week, am and pm, there were the familiar assortment; tiny, white tablets, fat, round yellow ones, small green capsules, and the very important oval pinkish coloured Ribavirin tablets. It all looks a bit like a pick 'n' mix. No reddish-purple ones, though. Moment of realisation! It seems I hadn't loaded my anti-depressants in, along with the others, on Weds morning before doing my injection and going off for my op. The normal routine for me is to do my jab and Wednesday mornings, and re-stock my pill box. But clearly, something had gone pear-shaped with my well-executed (or so I thought) preparations before going to hospital. I had taken some extra meds in my bag just in case - but I hadn't re-stocked the pill box properly. So, of course, though unaware of this, I hadn't been taking my anti-depressants for the last few days. Ok, I think, bloody typical; if I was going to omit a pill - it had to be the damned AD's, didn't it? (Blood pressure, anti-histamines, all the various supplements, they are all there.) Then I think; well, thank god it wasn't the riba; fortuntely I am right on track with them.
I had, before that, found myself wondering about the fact that I had been feeling fogged, weepy, angry; and curiously, both full of self-pity yet strangely determined to put on a cheerful head - tell myself and everyone that "I am fine, absolutely fine." Surely not still the anaesthetic, after a few days? And this is more intense, I am sure, than my usual post-jab response. Perhaps it's also because I am missing my husband, who is abroad for a couple of weeks? And now I am also thinking; well there is another key ingredient also; I haven't been taking my anti-depressants for the last few days.
On a practical level, apart from missing his presence, I recognise that had my husband been here, he would have done most (ok - all!) of the basic chores, and I would have concentrated, and sorted my pills properly, instead of wondering around in pointless circles, thinking I was being efficient.
The morals of the story are: a pill box is a wonderful thing, if (like any system) you actually use it properly. A good husband is worth his weight in tablets as well as gold. And some of us on treatment are beyond all sense, without our anti-depressants.
May all your tablets be taken, your capsules consumed and your pills be popped!
I missed a couple of days ADs once before, by mistake. Either we live and learn, or we repeat the same mistakes, again. And sometimes - again! A lot depends on circumstances. And brain fog, of course.
Monday, 5 April 2010
for broader over-view, please read Part One first. (There you will also find links to more background information and to support options) Many patients will experience at least some occassional milder mood changes; having a realistic understanding of wha to expect during treatment does help.* Some people will have more intense reactions or go through periods when they do; these articles are to help understanding for them as well as their family or friends. .
Individuals stories, and thought to hold on to if ever you do “loose the plot” and wonder what the heck is going on with you. I did say “weird and vacant.” Vacant was how I felt when i was: volatile, anxious, confused, angry, neurotic and tearful. I add this note as a direct description of my own experience - and a sort of anchor, to help you remember; No blame, no shame: remember it’s the meds and chemical reactions, as well as normal human responses to illness and struggle. Hold on to humour and as many routines as you can, to stabilise and normalise your days. You will emerge, stronger, wiser and more resilient than ever ..... and I hope: virus –free. Here is what some other patients said when asked "what were the most difficult side effects of treatment?" (many patients have only mild reactions in this area: others experience it more, as did these people.)
"The mind stuff is certainly the worst. The feeling of being absolutely useless at everything I once took for granted; like being able to process information. This and the insomnia which makes it 100x worse.“bugs”
(note: due to secondary health issues, at one point this person had to choose whether to cease or to continue treatment, when chances of successful outcome were looking like they were seriously reduced. Despite having suffered the “Weird” effects, this person chose to continue: stronger than ever before and determined to fight the disease.)
"I have done two treatments, one without Ad’s and one with. I thought I was fine with the 1st treatment, but in fact I was not. The interferon had bought and booked me onto the crazy train - and I was not even aware I was going for the ride. The 2nd treatment, with Anti-Depressants, was still challenging- emotionally and mentally. ut at least I had a footing and base to keep things together.
Some folks do just fine without the Ad’s (but in my opinion ) they could be on the train and just don’t realize it. I have yet to come across anyone in all my time in Hep C circles, that wasn’t affected by the Interferon in some way mentally. For some these are just subtle changes; but for some these changes are drastic. Again this is just my opinion but I believe they are a very important component to treatment and should be started before Tx begins to get the full affect. I’m also of the mind that the pre-treatment stress and anxiety calls for anti-depressants, for some folks as a norm. (M. G.)"
(this patient did not clear the virus, but continues to support others through effective management of treatment, to maximise chances of full recovery.)
"The worst side effect is the mood swings caused by Interferon Alpha.Some experience full-on depression, but with me it was full-on anger and impatience .This manifestation didn't much hurt me, but everyone around me , like my family (my immediate one), who had to endure hell for the weeks when I denied I had an anger and impatience problem on treatment. .For the whole of my 2nd treatment , I managed the brain chemistry changes with Citalopram, and fluctuated between 20-40mg per day.However, my 1st treatment was different, on this treatment, I held-out until week 24 without an SSRI and my wife (carer) and daughter suffered horrifically. It was at week 24 that I was frog marched to the GP, by my wife, for some SSRI's , apparently I was a puppy-dog within 48 hrs of taking them .So why is uncontrollable anger and impatience the worst side effect of HCV Combined Therapy?Because, if left to go untreated (unmanaged) , it can destroy a long-term marriage, relationship between partners and destroy a parental relationship .In my case, it did not result in this terrible outcome to treatment. But I've heard enough patient stories to now realise that it happens very frequently" .Ross xxx
(note: 1st treatment did not succeed for this patient. Despite his experiences of mood reactions described, he chose to undergo treatment a 2nd time, in a commitment to clearing the virus. On 2nd round, happily he won the battle. For info re anti-depressants, please see links in Part One)
"Depression, Anger, Anxiety and generally being out of my mind. I got so emotionally unhinged at the end that I looked like and acted like those weird crazy people you avoid if seen in public. I knew it, but could not stop it. I just had to roll with it because I was not going to stop tx. This was with taking anti-d's. I shudder to think how horrid I would have been without, as I was horrid enough with them." Peek.
(note; this patient has done treatment twice and has elsewhere stated that had she not cleared the virus; would do treatment again, if she had to...Fortunately she is now post-treatment, virus free and recovering well. )
An overview of outcomes for people I have known through support forum and internet connection: Of those who have completed treatment and cleared the virus .... despite the more unpleasant aspects of mental or emotional sides .... none has said that they regret undergoing treatment.
Of those who unfortunately did not clear the virus, many have continued and done treatment a second time, even those who found emotional reactions challenging: they were prepared to ride these side effects through again in order to beat the disease.
Even where outcome of clearing virus completely was not successful; viral load and liver damage, as well as other Hep C symptoms, are likely to be greatly reduced in any event; thus minimising health problems and improving potential quality of life and longevity.
For those patients who did not clear, although there will have been initial feelings of anger and resentment at the experience of treatment; but the longer-term outcome, once they have recovered from intitial shock, is eventual acceptance. And recognition of the alleviation they will have achieved. And so, generally , without regret; but, instead, glad that they had undertaken treatment - and often waiting for an opportunity for re-treatment or new trials, in determination to be clear of HCV. I have read a comment by one person who was an exception to this trend; sadly this person had experienced other very complicated personal circumstance during and just after treatment.
This closing thought is offered as those making the choice to begin treatment, and to those experiencing he more difficult periods. Keep fighting ... HCV can be a very serious disease and so the battle is worth it. Wishing you peace, courage, as smooth a ride as possible, good support; and good health, good living!
xxx eva day
* please see separate article (to be posted soon) re studies showing how realistic expectations of treatment, before commencing, can make a great difference to successful management of treatment.
** also, to be posted in future; notes specifically discussing experiences of temporarily reduced concentration, general thinking skills and recovery of cognition, post treatment.
Sunday, 4 April 2010
This is a basic over-view of emotional and mental reactions Hep C patients might experience, while on treatment. . For explanation of medical causes, and for further information, please follow links given at end of article.
I’m calling it the weird experience because during treatment, general perception of day to day reality can feel very surreal.
I use the word “weird” as an anacronym and in a lightly humorous way. This is about getting past concerns of there being something “wrong” with us when we experience these emotional reactions on treatment. So, with a little gentle laughter and relief from fear: weird stands for
Withdrawn, Emotive; Irritable; Reactive; Depressed. ......
Ok; sounds pretty unpleasant?! These sides vary, amongst different patients, from minimal and transitory – to more extreme. In general, for sure, treatment is no picnic. Even if you do remain fairly level most of the time ...... there are likely to be moments....
My own take is that treatment is a commitment, and can be tough: but worth it with the end goal in sight. Clearing the virus.
. Having a clear and realistic sense of what treatment entails is one of the best foundations for managing it well and successful outcome. Some people do find the mental effects worse than some of the physical side effects. But, with the right medical and social support, they are manageable and it is doable. So here are some of the more common experiences;
Withdrawn. Fatigue, discomfort and irritability may make you tend to absent or isolate yourself. . Some retreat may be part of the process of diverting energy into fighting the virus. Too much disconnect, though, will exacerbate depression. Try to step out of the bubble and interact, even briefly, as regularly as possible, without becoming exhausted.
Emotive. Emotions and perceptions may become heightened. For example; anxiety; feeling weepy; sudden and intense changes of mood or odd thoughts, paranoia. etc. . without always knowing what is the trigger. Keep an eye on your sleeping patterns. Insomnia can make this more severe.
Irritability. Pretty common: from irritation at things that wouldn’t normally bother you, to full-blown fury .(Often referred to as “Riba Rage”, named for the Ribaviran.) -Hopefully, friends and family will understand some edginess and and ride out even the occasional more extreme reactions. It may be reasonably containable: but , if it reaches the level of aggression, or potential abuse; get help. . (see quote by “Ross” and others, below in Part Two.)
Your thoughts and your interactions with others – can be magnified –at times you may be hyper-sensitive: a minor concern, suddenly becomes a compelling fixation or a slight disappointment suddenly is hugely unfair .... and others seem insensitive to not understand your feelings, but later, it may seem no big deal. Some people get a bit paranoid or generally anxious. . Try to remember it’s not you, it’s not real .... it;s the meds. Used post-its, stuck around the house, as reminders of this.
Depression. there are complex physiological and emotional processes involved. Symptoms can include: *a low, heavy, miserable feeling *general loss of pleasure in things that used to be enjoyable – often including sexuality and intimacy. * reduced concentration. * hopeless and bleak thoughts. . Some of these reactions are natural responses to chonic illness. But a lot of it may be chemically induced by the treatment meds you’re taking. Remind yourself what the fight is for – to eradicate the virus and regain your health, natural enthusiasm and quality of life. Please follow and read links on managing depression.
PLEASE SEEK IMMEDIATE HELP IF DEPRESSION REACHES POINT OF THOUGHTS OF SUICIDE OR SELF-HARM . THERE IS A WAY THROUGH. ALSO, SEEK SUPPORT IF OTHER FEELINGS, EG ANGER, OR ANXIETY BEGIN TO BE OVERWHELMING - TALK TO HEALTH CARE PROVIDER & FRIENDS / FAMILY. CONSIDER ALSO THE ROLE OF ANTI-DEPRESSANTS IN MANAGING TREATMENT. SEE LINKS BELOW FOR HELPFUL INFO
General notes on emotional well-being and understanding / treating depression. http://helpguide.org/mental/depression_signs_types_diagnosis_treatment.htm
(telephone helpline for mental health issues)
The following links access information on emotional and mental health specifically related to Hepatitis C and Hep C treatment.
(see section 8 – mental and psychiatric symptoms)
IN A SEPARATE POST, PART TWO OF THIS ARTICLE DESCRIBES SOME PATIENTS PERSONAL EXPERIENCES AND DISCUSSES OUTCOMES OF TREATMENT CHOICES AND COMMITMENT
Tuesday, 30 March 2010
all you wild child, gypsy nomads, party poppers & risk takers (back then in the past or still living it out now, on the edge from time to time or too much but you just can't help yourself) when we were innocent (and younger) we thought we could get away with it all . ........ further down the line we sometimes discover there may be a price to be paid for all that reckless abandon and experimentation! that's life, kiddo. I do NOT agree with people I've read elsewhere saying stuff about "well, it's karma." that's almost like: serves you right for not being a good girl / good boy. some of us broke out and messed around - and got the riches and the journey as well as the possible dangers of that, is all I'm saying..........so if you ever:
*jacked up a few times and ran out of clean spikes and thought just this once, splash it in boiling water, it's only my buddy, we'll be fine (in other words, you shared a needle: once, just once, is all it could take. )
*backpacked off to some exotic destination and got yourself a tattoo from someone who set up a little shack on the beach somewhere, whittled their own bamboo ..... well, you were off your face, and it was a personal slogan written in thai . hindu/ make it up script, whatever ...... maybe it wasn't totally sterile?........
*similarly, you were drunk, everyone was wasted, your mate did a DIY tattoo when you were all hanging out in some club / pub/ squat/ you were so gone you never felt a thing. it did get a bit scabby.. no one meant any harm, it was kinda funny ..... but .... maybe it wasnt sterile etc etc back then we didn't know that the Hep C virus was catching a ride from one mate to another ......
*someone practiced acupuncture on you and they tried but maybe ...... it wasn't sterile? you get the picture ......
* and for those of you who didn't even get to have the fun of all the wild times: you have ever had extensive surgery / dentistry / a blood transfusion especially pre 1991 and sorry - we didn't know; some health workers were unkowing carriers - some blood batches were infected.
* whoops factor 1. you might have accidentally used someone's toothbrush (it happens) who maybe was a carrier. and they / you had bleeding gums and: well, you heard news of them recently - sure, they're fine. but they could be a carrier or not manifesting yet.
*whoops factor number 2. remember that time you cut yourself, your mate had a cut too, you guys were rock climbing or whatever - he helped patch you up ...... wonder if there was any blood to blood contact? remember, this is a blood bourne virus.
none of this is to make you paranoid. just that early diagnosis is of course best. and it's realistic; this is a fast growing world wide epidemic. (google up AM I NUMBER 12?) so don't be anxious, just get tested. and if you know someone who you think may have been at risk - are you able to gently suggest this to them? most especially if you know someone who always seems to be sick and tired - struggling with unexplained symptoms.
much love; carrying on doing your thing and if you're a natural risk taker (some of us are, and I get it) ok, that's your nature; just take a safety / reality check now and then. no blame and don't oversimplify the very subtle concept of karma. karma is just ... your path
much love Eva
written by eva day: Nov 2009.
for further info, access http://www.hepctrust.org.uk/
Monday, 29 March 2010
THIS IS WRITTEN AS A SHORT "FLASH CARD" STYLE CRIB SHEET TO SHOW TO COLLEAGUES, FRIENDS, FAMILY, TUTORS, BOSSES ETC., TO HELP EXPLAIN HEP C TREATMENT. PLEASE PRINT AND USE IT IF IT'S HELPFUL.
SHORT NOTE FOR FRIENDS/ FAMILY / COLLEAGUES OF A HEP C PATIENT
This person is on treatment to fight to eliminate the Hepatitis C Virus with which they have been infected. They have a certain percentage of chance for success and have to maximise this by following very particular treatment procedures. They understand the basic facts of this disease and are not putting you at risk of contracting it in any way: please be assured of that. As time goes on, they will learn more about the disease and how to manage treatment; it requires a big commitment over a long period of time. Hepatitis C can be a very serious disease, so they have taken a very positive step in committing to treatment. They may often look and seem fine..... and be wanting to be as cheerful, active and positive as possible. But the virus is a tough one and so treatment is quite radical. Treatment can cause be a lot of side effects. Various changes in bloods, and chemicals they take, will cause fatigue. They are often: sore, very weak and tired, generally uncomfortable, maybe having to suffer sleep or mood disturbances. For some, not all, there can be depression and loss of normal concentration levels. Your friend will tell you if that is the case if they feel they need to. They may also have various strange, uncomfortable sensations, painful joints and muscles, itching, headaches, nauseau, heightened sensitivites to a lot of activity, noise, even foods, taste and smells. ALL THIS IS DUE TO THE VIRUS A& THE MEDS THEY ARE TAKING . For you to read this and understand a bit of what they are experiencing will certainly help them so thank you.
by eva day
p.s. click on this link to access very good Hep C forum - good information and support for patients and their family and friends http://hepcnomads.co.uk/phpBB3/index.php
Friday, 26 March 2010
the KatyI 'm talking about was the lively girl, tomboy heroine from a favourite childhood book of mine. sorry blokey blokes - you probably didn't read it, but those of us who were girl children might remember? Katy was feisty and fun, full of energy, often awkward and in a pickle and with a quick temper but warm heart. numerous siblings, aunties .... and then a cousin who arrived at the family home, sick, saintly and dying. or gently declining? I believe she was called Cousin Helen: and I refuse to check my references (or to be corrected) as this is how I am happy to remember it.
Cousing Helen had some mysterious ailment from which she was gradually fading away; she lay on a day couch. in a lovely room next to an open window, fresh flowers by her bed each day, smiling sweetly, welcoming in the various boisterous children, dispensing kindness, words of guidance, kissing the hurts better, patching up disagreements .... and never once complained of pain, discomfort, loss. This was my childhood myth of illness, and I knew that if ever I had to face it my life, this is who I would be; pale and interesting, angelically embroidering samplers with little home truths on them, to give as gifts, reading the classics, and gathering loved ones around me, singing and playing piano until everyone quietly tiptoed on as I gently drifted off to sleep. Probably after an occassional dose of some lollipop-flavoured laudinum and a dash of brandy, dispensed by a kindly old doctor who delivered me at birth.
What a load of old bollocks. I was convinced that something magical happened once you were ill .... there was pain, yes, but somehow angels surrounded you in a bubble of oblivion, so that pain became remote, you floated gently, poignantly in a mist of tranquil detachment from the world of ordinary trivia, and a sort of wisdom and peacefulness descended on you.
I recently looked up books about illness, for children, to help them understand a parents experience through chronic illness. Haven't looked at much of the content yet but sure hope it's a little more real than the images I grew up with. If not I shall write one: and call it "The year My Mum was Crumpled, Collapsed and Crabby." ( a child's eye view of Hepatitis C)
I believe there was also a sequel to Katy's story: she fell of a swing and damaged her legs and spine and became, herself, confined to the couch for a year. At first she was cross and crotchety...... but with Cousin Helens inspiration, also transformed into the angel on the sick bed.
As for me .... with various health problems running up to the Hep C diagnoses, I have now been largely inactive and unwell for three years, and pretty much housebound for two. Crumpled, Collapsed and Crabby pretty much describes at least several moments during the average day. I do have moments of ... well, lets not go so far as to say sweetness and light, but of being reasonably pleasant and not unbearable. They may not last ......
Probably lucky for the majority of people in my life that I am living at some distance from previous social circles. They don't have to put up with me. My husband does ... and chooses to. And still enjoys my company and remains calm, level, understanding.
Obviously, in this household, it is the carer and not the patient, who has the saintly disposition.
(thank you darling!) I have often read, from post-treatment heppers, that the disease and experience has made them a better person. I will put my faith in that experience, since that is how they tell it .......
but would like to ask, at what point does this transformation of self-improvement and growth become manifest? I am three months into treatment and no sign of it yet!!
Will certainly let you know, when it shows up, and am willing to share a little of it, too!
meanwhile, I remain collapsed, crumpled and crabby - and I am sure my daughter would agree.
@home at home, not well. but reaching out to the world.
I have Hepatitis C (tough) and am on treatment (also tough going).
Hep C does not define who I am; but it has defined a big part of my reality at this time
it's sure to feature quite regularly in this blog
but so will other things
I hope someone somewhere along the way will gain
something from what I write. and I hope that
I will, too.
I welcome comments, dialogue, discussion and interaction.
ps. if you have Hep C, or know someone who does, this is the link for a very good support forum: lots of good info, and warm community http://hepcnomads.co.uk/phpBB3/index.php