The Bloody Truth (part one,) Post Treatment Realities

Pandora, in Greek myth, was warned not to open the box. Poor girl, I always thought what a rotten, dirty trick that was to pull on her - any intelligent person with even a small amount of healthy curiosity would have opened of course. It was a set up, obviously. Perhaps Pandora was the world's first true scientist and investigator. Unfortunately (as science and life generally tends to do) things got messy. Opening the box lead to the release into the world of all the evils, fears and torments of the human journey. Is Pandora personally responsible for this, or was it Zeus (the bastard) who set up the in vivo experimental conditions? Or shall we just accept shared moral and spiritual responsibility as members of the same race and get on with making the best of life?

Getting on with making the best of life, as it is in harsh reality, however screwed up and ugly, is just about all you can do, once treatment is over. You certainly can't take your box (containing 24 weeks, 48 weeks or however long you battled in out) back to the retailers or your consultant and say - this is a hell of a bum deal. I want to change my mind. I am returning the long-term damage, physical and mental ravages, total personality melt-down and bad dreams and requesting my former life and self be returned to me, virus or no virus.

What I would like to know, though, is why does no-one (of those who certainly have the ability to do so, should they be willing) tell THE BLOODY TRUTH about Hep C and it's current major, conventional combination treatment?

It is hell - not for all patients, but for enough of them to be of serious concern if we really as a society, care about people, individually and collectively. . Unless, of course, there are other reasons and agendas for a medical and social propaganda which so often insists that this tx and and it's after-effects is moderate, "do-able" and without serious and measurable long-term damage.

For some, for many, this is true, and much goodwill and congratulations and all good wishes to them. (Be assured I have plenty of anger and bitterness, but shall reserve that for those who have either deliberately lied to me or simply done so from laziness and indifference, whilst being well paid to provide me with some basic decent health care.)

How ugly and ungrateful - to openly express anger and bitterness at a time when a more pleasant and likeable attitude would be to be talking with gracious relief about having so far shown no virus in the blood and my gladness that the battle is done and life and it's promises lies ahead like a clear road to a new horizon.

This piece of writing is really a "thinking aloud" offered not to those doing relatively well or even just about hanging on ok. It's an offering to those other lonely souls who feel - months, sometimes years after treatment - lost, alone, sad, tired, constantly ill and wrong and bad and inadequate for saying so.

That last one is the worst of the burdens, perhaps? Tough enough to emerge from tx in a kind of mad, desperate final stagger, as many of us do, holding on to the hope we have been promised - that we will "soon feel so much better."

And we wait and we wait and have patience (and hope, of course, since Pandora fortunately managed to find that in the bottom of the box of nasties and we are reminded of it by those who do want to be kind and help and support us.)

As time goes on, the fear sets in more deeply and yet somehow becomes more silent, more impossible to discuss. No-one wants to hear that at five months on, you still have open wounds on your skin which will not respond to any annointment and yet you did not attend the dermatologists appointment because you were too trashed to get in the car and go there (or whatever your particular version of this sad and pathetic scenario might be......)

You are not helping yourself. You could be tougher, more positive. Try harder. You ccould be inspirational, too. You know - it's a very popular social model these days, of the valiant patient who goes through something very long-haul and hard core and emerges talking of "hopes, dreams, forgiveness, courage and deep healing." (Think Oprah Winfrey and beautiful survivors on reality and live talent shows.........)

Good role models for us all.

But what about those who feel tired, depleted, and feel that dreams, hopes, promises have simply been mangled into a kind of chemical and hormonal mush and the best one can hope for each day is to have got it together to have cleaned one's teeth (aware of the still sore and bleeding gums and strange mouth ulcers) or brushed one's hair (and how is it one's arms still feel so tired and heavy and scalp still hurts?) And so on ....... I shan't list the many little devilish torments and struggles which continue for so long, post treatment, though I will mention a few more in part two of this theme. For the person of reality checks for those who might desperately need that.

It's not very "nice", is it? The best stories about illness and survival are those with some theme of redemption or spiritual and personal renewaal and rebirth. From the depths of the hideous, the thriver brings forth something beautiful and brave. And states confidently they know themselves so much more, and have a better relationship with life, god, the world, forgiveness and peace and more to contribute. I celebrate that with them, and thank to life and hope for them.....

But what if you were bloody -minded and awkward and socially inappropriate to say: I do not feel special, strong, transformed, optimistic, courageous or stronger. I feel weaker, more tired and jaded, more world-weary and dis-spirited and I like myself and people generally considerably less than I did before.

I don't have the virus (apparently and so far) and "should be grateful" yet all I feel is numb, pointless and "so what?" Perhaps I am just become not so much a nice person and more negative, less able to somehow by will and imagination, improvise a positve construct?

If so, then oddly, I can accept that. I don't feel "nice" - and certainly not cheerful or full or bounce and vigour.

I am quite clear that I am continuining to experience difficulties on three major fronts: 1) various odd physical symptoms. many fairly minor yet added together, in relentless clusters, with relief, the accumulative effect being that I feel constantly tired, uncomfortable and feekking irritated (it just becomes damned wearisome and frustrated, undermining every simple task and activity.) 2) Compromised immune system - never serious enough in terms of actual blood readings for doctors to have serious concerns or plans for major intervention, but enough to be frequently besieged by bugs, germs, and anything going. 3) Neuro-toxicity effects. Please, can we actually acknowledge this, between doctors and patients? My cognitive processes, memory, concentration, sleep patterns, pain tolerance and pereption, muscular spasms, mood, perception and personallity are all hugely disrupted and stabilising is so slow and erratic as to be frightening, sad and isolating in many ways.

How difficult it is to describe and convey these realities to a doctor or a consultant as they simply stare back at you with an expression of bewildered helplessness and frustration and one begins to feel that one is a rather annoying patient - and letting the side down by not doing better and getting back to normality (remember that??)

Most patients do better - yes. We strugglers and stragglers and battered wrecks are in the minority. We soon learn to shut up about it. Don't tell the bloody truth, it's annoying and incovenient and hints at the fact that you are possibly just neurotic and wasting valuable medical time, costs and resources. Just get better. Eat better. Go for a walk every day. Think Positive. Pull Yourself Together. We soon learn to shut up about it all......

My doctor has no idea why I wake some mornings (after strange, broken cycles of two hours of sleep, disrupted by twitchng muscles and bad dreams) with swollen ankles (I am talking big, here) and sore kness and another outbreak of strange rashes on my hips. Bloods are all (mostly) within normal (ish) range and though not quite right - well if there is yet another infection, do I bash my system with yet another course of anti-biotics, or just take some more echinacea and hope it passes?

And if anti-depressants are stabilising my mood enough to make me just quietly morose and not out in the world infflicting severe mood swings on other people, then isn't that at least some kind of management?

If my transactions and interactions in the daily outside world are now severely limited by my poor concentration and comprehension - does that really matter as long as I somehow keep functioning at a basic level and with a bit of help, patch up the various mishaps along the way?

Many people look back at treatment - and are glad, grateful, that they did it and got through. Those who got the precious SVR (fantastic) and even some of those who did not, but who gave it there best shot and perhaps at least beat the virus back for a while, bought themselves a few years.

My bloody truth (and I have no flag to wave about this - the choice is personal) is that, had I known the reality of the treatment and it's possible long-term effects, I would not have undertaken it.

No way.

At no time, ever, was I given a realistic over-view of what HCV treagtment was really about and what it's possible long-term consequences could be. During the worst periods of treatment (physically battered and mentally deranged) doctors and health care prviders all appeared rather puzzled, as if this were a peculiar and indiviidual abberation and odd reaction on the part of one particular maverick patient - who somehow seemed to manifest not only a "difficult" atttitude and psycho-social profile, but also a difficult biological response. Which could therefore be totally discounted, against any other evaluation of the disease and it's treatment, in approaching any other patient.

But, get this! Every other patient I have had contact with who has also had such horrible, difficult and truly desperate symptoms has been treated in the same way - as an exception, an oddity, an abberration and as somehow who is inconveniently disrupted expected treatment protocols and outcomes.

Don't tell the drug companies and the general public, for god's sake!

I have no great solution for you, if you are one of those who, like me, is struggling daily with pain, discomfort, disfunction, loss (of lifestyle, self, sometimes hope, clarity) and with fear - bloody fear. All I have to offer is the courage to share the experience of telling it like it is and telling the bloody truth. One does feel less alone, that way. Annd we can remind each other that:

Physically: if you are tired, sore, have no body clock anymore, suffer frequent headaches, skin outbreaks, feelings of toxicity, nausea and dissiness - whatever your particular nasty mix: this is real and worthy of discussion and acknowledgement and consideration from your health care providers, without your being dismissed or told it's your age / attitude / menopause or any other attribution with which you are shunted sideways (God forbid we name the treatment up front for what it can do.... at worst.)

Mentally and Emotionally; you are NOT inadeqate, pathetic, bad, wrong, useless or any other criplling doubt or label which you or others might apply which will only further underminbe and crumble your daily fight to be a whole person. You MUST remember you have undergone several years, no doubt, of the insidious ravages of the disease itself on the whole system. Followed by six months, a year (whatever) of pumping yourself full of a powerful duo of physical and neurological toxins, alongside all the other secondary meds to help you get through that. Your brain gets FUCKED. At the same time that this is all happening, you have experienced the loss of huge expanses of your former lifestyle, abilities, personal attributions, social circle, finances, and even comprehension of basic routines.

Your personality got shredded and has not remerged all shiny and new - or in any recognisable form at all except for something rather like a zombie. (No wonder we Heppers so often have a fascination for tales of creatures of the underworld and aliens....)

Your thoughts and mood and attitudes are not as bleak and sinister and still murky and often nasty and/or confused because there is something fundamentally wrong with you or you are inadequate in some way. In fact - if you somehow keep going, then you are admirable, and one tough cookie. The problem, remember, is that your brain and emotions have been completely scrambled. And life has hurt badly and been terribly disappointing and painful. While you were struglling with the phsyiology of it all, many of the people and the familiar shape of your life and world just walked away or totally dissolved.

It seems to me fairly understandable, normal, human and deserving of compassion and support if you are: angry, in a bad mood a lot of the time, sore, tired, lacking enthusiasm and generally not cheery or particularly jolly, sociable or friendly. Be patient (yes, we are back to the hope, patience, and time factor, which is pretty much our base camp.)

I do no feel I have "learned a great deat about myself or life" as a result of Hep C and treatment. I reckon I had already done quite a lot of living, before that took over completely - and now, like many, realise also why some things and "solmething" was not feeling right for a very long time before diagnosis.

I refuse to mythologise this illness and treatment any more. It's horrible, messy and nasty and very sould destroying for some folk. If you didn't manage to somehow keep on working through treatment - or get back to sports or parties or whatever other real time and real life stuff, a few months down the road, know this:

it is NOT because you did not have "the right stuff." God knows, none of us enjoy or want the misery and loss of it all....

it is because for various complex reasons, the disease and the various factors combined in treatment hit your system at the more extreme end of the spectrum. A bummer, rotten luck, etc, but not your fault (come on, we all know how that suspicion creeps around at the back of our minds, and between the lines in other's words and looks....)

the bloody truth is that Hep C itself can be, at worst, a very nasty disease (and could all those - including doctors, who said things such as "it's not that bad" just get real and/or fuck off?) and treatment for it can be a dreadful torment followed by months / years of tough, lonely and bewildering struggle.

biological and hard facts of life - and, no, we still don't have the answers to a lot of it.

well, ok, so you did tx and no-one warned you not to open that particular box (in fact, they probably said it would be unpleasant but moderately ok.) and once treatment was done - a few months down the track, you would be alright.

and you're not? well, so let's at least talk to each other openly about it, tell our medical practitioners the bloody truth and keep insisting that they begin to do so, too, and talk openly with other patients of Hep C.

I would never advise anyone for or against the treatment option. I just tell my story, and share my observations from others I've known along the way, and suggest this:

make sure your choice to treat is as well informed and considered as it can possibly be.

make connections with others fighting the battle, as much as possible.

and ask that doctors tell the bloody truth.

wishing you always hope and humour, and health. eva day

Twelve Things That Can Screw Up Your Post Treament Recovery: Hep C

Compiled by eva day and Aunty Norma Normal


1) SHOPPING. shopping is so very bad for recovery that it has a category of it's own here, plus several sub-categories. Shopping is very confusing and distressing while you are on treatment. But this does not qucikly change after EOT. People are out there. Aaggh they get in your way and act annoying, and talk loudly or yell in echoing voices into their mobile phones. Also they might LOOK at you, and you certainly don't want that. Probably you look ill and angry. Also shops are dreadful, full of too much STUFF that looks like a jumble of confusion, how do you know what anything is or what you are wanting to buy? You already forgot due to the stressful environment and all the weird music and horrible lighting. Uggh. Also money is very confusing and you probably anyway will leave the shop without the items you purchased.....Avoid shopping as much as possible.

2) Your Gp and / or consultant / hep c nurse. I am sorry but two weeks after you have finished treatment, they will now think you must be alright. They will want to cut off your supply of pain meds/ valium / sleeping tablets, and will be puzzled as to why you seem to be looking wild eyed, crazed and semi-hysterical. You must be a really difficult patient. Try to give these people some written information and /or go to appointments with a trusted friend. Also try not to kill them, clinics have a zero tolerance policy and they don't undertand that - so do you...... )))

3) More Shopping problems. People who stand in the way. OH GOD THEY SHOULD BE SENT TO AN ENFORCED BOOT CAMP TO LEARN SOME SPATIAL AWARENESS. In small groups of 3 or 4 they will stop to chat in the middle of the pavement, taking up as much space as possible by spreading out and waving their arms around. In twos and threes, they will stand in the MIDDLE OF THE AISLE in a shop and block it while they discuss bullshit. Solo people will angle their trolleys right across the aisle. They will also stand still in shop doorways, checking their text messages. WHY???? Also , on busy streets, the majority of people have no idea how to walk amongst crowds, they amble around in meandering lines so you can't deftly negotiate your way through it all quickly and GET THE HELL OUT OF THERE. Shopping malls are especially dreadful and the stress of all this will certainly disrupt your recovery

4) Unrealistic expectations, I have to tell you that if you thought that, after treatment stopped, you would "feel much much better, even within a few days, and within a couple of weeks, eating and sleeping better, feeling more settled in yourself, screaming joint and muscles pain gone and real skin instead of patchwork of doormats and sandpaper....." well people may have told you this but it ain't necessarily so . and if you expected it then you could be terribly shocked and discouraged which is also not good for recovery

5) The News. I am afraid the news and current affairs is also bad for recovery and I don't think I need to explain why

6) MORE SHOPPING. this time it is - self-service check-outs, they don't work, you always have to call and assistant to reset the damned thing, and then as you load your shopping into your bag, an evil mechanical voice will chant at you "error, error, there is an unidentified object in the bagging area." FUCKING HELL!! someone very sick in the head designed this system to make brain fog even worse. also the nasty mechanical voice will actually nag you to hurry up by repeating, "please load you goods into your bag, please complete your purchase" over and over again. this is truly cruel

7) Your Friends and Family. I am very sorry to tell you that around 60% of your friends and family will impede your recovery by making you very angry and alienated when they say things like "oh, you are looking / sounding so much better." or " well I expect you are feeling such a relief and so much more cheerful now." and even " so now you are totally cured, right?" when YOU HAVE EXPLAINED THE WHOLE 3, 6 AND 12 MONTHS SCENARIO ABOUT ONE HUNDRED TIMES ALREADY. this again is yet more stress. also they may expect you to now: go out on jolly little triips with them, help with their latest gardening/ re-decorating / normal life project as they have not had a helping hand from you for over a year and anyway it "will do you so much good." ((((((((((( also they might ask you questions, like "what did you do at the weekend??" and will find it very strange and boring when you tell them you did not do anything, you are still on the sofa staring at nothing

8) MORE SHOPPING HELL. if you wish to wear a balaclava or a sack over your head because you don't like to be seen, unfortunately, shops don't like this too much. they just do not understand at all....

9) The telephone. Of course, all the way through treatment you have neither wanted nor been able to speak on the telephone..... in fact it is an appaling and almost phobic idea. Possibly now people also think you will talk on the phone. You in fact might also think it's time to do this. Well if you must, then limit yourself to no more than five minutes or your brain cells will spontanesouly combust. obviously that's also very bad for recovery

10) Driving. well I guess at some point you will get in that metal box and try and go somewhere. There seems to be a horrible conspiracy going on as while you are out, doing this, agents of disruption will keep moving all the streets around and you will end up twenty miles from home, when you only wanted to travel a mile, and with no idea where you are..... be careful to only drive when you have to until really totally ready. also there are other people out there driving, and they have a very selfish and insane way of doing it and many do not believe in using indicators.....

11) Going to a hairdresser and getting your hair cut. this is out of the question until at least 9 months post treatment. if you consider it any sooner than that - are you CRAZY??? it takes ages, and the lighting in salons is even worse than in shops., also everyone looks gorgeous and you look and feel like a fiendsih zombie vampire type creature and have to shut your eyes so you won't see that big cruel harsh mirror. and everyone else will think this is weird. also the haridresser will try to talk to you about holidays and this will make you want to grab the hairspray from her and attack. but worst of all will be the torturous manhandlong of your head and scalp for what feels like one hundred years of yanking and bashing your skull. don't do it, just wear scarves over your hair all the times.

12) Advice. Other people's (yes, well-meaning and kind intentions) advice is VERY bad for you. Be warned, here are some of the things thiey will tell you: * try taking some echinacea, it's very good for your immune system. * make sure you drink plenty of water. *have you heard of Milk Thistle? it's good for the liver. * try to set yourself small goals and give yourself little treats as you achieve them * oh, you must make sure you get plenty of good sleep, it will really help restore you (aaaagh yes we know and we know a lot of the other stuff, especially after 48 weeks) *try to think positive, as a positive attitude will help you stay on track * why not do some yoga??? * maybe you should go to an evening class?

well, I hope this is helpful. today I HAD to get out and go to a busy shop. the self-check out machine was not working.... while the assisstant was trying to re-set it, another customer kept interrupting and saying - "excuse me, my machine isn't working either, can you just quickly have a loook?" etc..... I told her quite firmly, to wait...... she carried on chipping in while the poor assistant was trying to concentrate.....

I yelled at her!!))) I shouted "Have some manners and wait your turn, this poor lady can only serve one person at a time and she is serving me right now....!!"""

I REALLY YELLED!! it was cool and I felt much better)))

good health and recovery to you all. eva day

HCV and the Next Taboo..... Shadows beyond Treatment

(this post is dedicated to : Margaretha: Sherry: Skank: Jenny. and all post treatment ) One of a series of post on Hep C post treatment recovery

I write this article for all those reaching the end of the many months of a gruelling treatment to combat Hepatitis C., and those just finished in the last few weeks. But if any of the themes are relevant and helpful to those recovering from treatment for other conditions - please share with them, the link for this blog. And please engage in discussion and shared experience, both here via comments and amongst your own networks. Why taboo? I am not talking about the more general problem of disclosure of hcv status so I won't say much here about the stigmas of actually having Hepatitis C. For most patients, even if not directly in the firing line of it, the reality of stigma for some is surely at leastfamiliar. There is some debate refuting that stigma exists, mostly from those such as myself fortunate enough to be in a personal circle of support or environment where there is little judgement or serious consequences of disclosure. But it's is a real problem for many, I know from personal stories of others. Can't tell family / boss/ collegaues/ neighbours about .... the nasty disease. This of course adds to the struggle and isolation and difficulties asking for support, both practical and moral. Well, many including myself have written about this elsewhere - and hopefully will continue to do so.

Here I want to talk about a very subtle taboo which shadows both our relationship with others in our lives who don't have Hep C - and even sometimes with other Hep C patients. It really gets tough when Hep C patients feel confused or discoouraged as to how or whether to talk about more raw and ugly issues even amongst other patients. Please don't all yell at me at once and insist the Hep C support community - both on-line and in real time support groups - is a conclave of angels!! And that we can always talk about things totally openly. Sure we learn to have tremendous compassion and insight in sharing a way through this stubborn and often horribly cruel disease.... but we have our Achilles heels and learning curves, too.... The discomfort of others speaking openly and uncomfortably and raising themes that are scary, too intense, too "negative" is at times another obstacle to be negotiated, even amongst patients.

Maybe to describe taboo seems a bit over-stated? I don't think so though - I felt terribly uncomfortable trying to talk about my experience of post-treatment realities: there was often a real awkwardness or uncomfortable silence, or defensive (or corrective) responses from others. People don't want others to shed doubt on the overall choice to treat, or don't want to hear concerns and struggles which they themselves may be trying to push out of their own minds.

A taboo can be an absolute social injunction against a particular theme or behaviour but it can also be more subtle. Here's one definition:

Taboo: A ban or an inhibition resulting from social custom or emotional aversion.


I certainly felt the inhibition, the emotional aversion: and have been told by others that they did too..... I think this is actually quite powerful and potentially quite damaging.... As those who remain very isolated after the meds have stopped, but are still incapacitated and struggling, can experience this as a very bleak time and there is then the additional isolation of being not only physically isolated, but also locked into a kind of silence and disconnection. Not great for feeling healthy, whole and confidently positive.... Well, the only way to make it more possible to talk about certain themes is ....
to talk about them. So:

What I want to touch on here is: * how different the experience of recovery beyond treatment can be, for different patients * how for some it can be another phase of struggle and symptoms, in the road beack towards recovery (so don't read on if you want simple reassurance, without the harsher realities of those times when it doesn't happen quickly or smoothly but do read on if you want what I hope will be a realistic and balanced picture. * how difficult it can be for many Hep C patients to discuss, describe and share their Post-Treatment recovery issues openly, clearly and honestly - even sometimes, with other Hep C patients, including those who are themselves Post Treatment.

Please let me say - and be heard - really clearly: that no judgement is implied of anyone, in raising this. Those who do speak out, or chose not to, or are not sure how to, and those who have genuine concerns about what gets described and how... Were someone to deliberately obfuscate the realities, for agendas of their own not helpful to patients - then that would be disappointing and wrong, and perhaps that does sometimes happen. The problem of deliberately obscuring the reality does exist, as many have quietly, or loudly, told me, following my own choice to write about it from my experience..
But on the whole it seems to me that the confusion and anxiety about a straightforward discussion among patients and between patients and health care practitioners, has its roots in a number of factors:

* patients who are post treatment don't want to discourage those who are considering starting treatment or are on treatment.
Because if they don't treat - then what?? There aren't a great deal of options in combating Hep C and it can be a serious disease. Conventional combination therapy can be for some a heavy duty and gruelling treatment, for others it will be less severe and for a few - some 20% - not too bad. But when it is bad it is - very very bad. HOw does a person make a choice to willingly step into such a treatment programme - for 24 or perhaps 48 weeks (or more if there are problems) if everyone is saying - it doesn't get much better for another (x) number of weeks once you are done? We WANT to encourage each other to fight the disease and we want to be honest - but how the heal do you get the balance? In the words of the song: "Do you want the truth ... or something beautiful?" Treatment can be ugly - recovery ain't pretty ..... How to describe the varied range of reactions?

* difficulty in ourselves in acknowledging the reallity of recovery. and awkwardness around causing discomfort to others
we held out through treatment by telling ourselves how much better it was going to be when it stopped (relief AS SOON AS POSSIBLE PLEASE!! LIKE - YESTERDAY!) when we hit EOT (end of treatment) it can be hard to admit even to ourselves that for a period of time we feel - no better / worse / tiny signs of recovery but screamingly frustratingly tiny/we don't even WHAT we feel like. ...... So we tell ourselves, yes I am feeling better..... (no I don't think I am) round and round in our heads till we have no idea. Then someone else asks "how are you" - and no wonder we don't know what to say. Far easier to say politely - yes, ok, getting there thank you. I didn't do much of that myself (being the awkward say it like it is type) but I did do it a few times when I was very tired - and a bloody lonely feeling it is, too.....

* conditioning. we have been told so often by others how much better we will soon feel and we are also unconsciously aware of covert social expectations to pull up, get it together now and get on with life.
This is not necessarily malevolent or deliberately cruel, from anyone - it's just steeped in our cultural attitudes to illness, positive attitudes, needing and wanting solutions and to "fix that which is broken" and other people's and everyone's fear of sickness and damage and vulnerability. So we encounter - in ourselves as well as others - a subtle background attitude: ok you've had you long and severe run of being ill and unable to function. Now you're done, no more meds - have a rest for a few days and then get back on the conveyor belt..... Sounds brutal but it's out there. Actually, I said subtle, but it's not always that subtle - even in the way we can do it to ourselves. I think also we fear that we are "miserable / depressing other people/ seen as inadequate or failures in our own eyes or others for not being tougher and overcoming symptoms through sheer positive thinking and willpower." This is where I think that misconceptions about positive thinking and mind-body healing and a strong attitude can get distorted and be harmful.

* Issues around images of strength and weakness, heroic survivorws and thrivers, etc.
We don't want to tell even other post-treatment patients or our own doctors that we are still weak, ill, sore, struggling - and minds and emotions still disrupted. What is .... they're recovering better than me? (I don't want to know) I am doing better than them (I will scare them) My doctor thinks I am neurotic? My boss thinks I am a slacker? and so on and on and on..... We feel inadequate. "Failure" to recover promptly and more robustly is in our minds, subtly, somehow a personal weakness and letting the side down.. We really need to bring this one to the light for healing, I believe. It is very undermining and insiduous.

Imperfect and awkward as it is, this is my intial thoughts on how to start clarifying and describing and sharing what is really the post-treatment experience and journey for Hep C patients..... It is part one of three articles I am writing, each with a different theme..... and I do invite you to comment, to exchange messages with me, to share your experiences with other patients - and maybe take a few small risks - or bigger ones if you feel able. And to begin to talk more frankly with your health care practitioners.

That leads me to mention the theme for a further discussion - and then to close for now. In the second part of this series on post-tx , I want to discuss:
* issues relating to discussion of recovery with consultants, nurses and other medics (and fears and anxieties surrounding that) as well as same within friends, family and at work.
* HOW TO WISELY HANDLE APPARENT CNFLICTS - REAL OR IMAGINED - WITHIN HEP C CIRCLES BETWEEN TELLING HARSH TRUTHS AND SOFTENING IT ENOUGH TO NOT FRIGHTEN THE LAST DROPS OF COURAGE OUT OF SICK AND TIRED PATIENTS

Also the next, and final post in this series, will focus on more practical/ tangible and /or solution -drive themes: ie patterns of recovery and regression post treatment and different phases. where to go for best health care and nutritional advice. networking with other patients, especially post-treatment. invited shared experiences and descriptioons and collation of different symptoms, recovery signs, time periods for real improvement etc...

thanks. and please note: THIS ARTICLE IS A WORK IN PROGRESS NOT A FINISHED PIECE- SO I HOPE IT WILL COME A COLLABORATIVE ONE AND I WILL CONTINUE TO ADAPT AND EDIT IT AS OTHER GIVE INPUT AND SUGGESTIONS. I DON'T SUGGEST I AM "RIGHT" OR "WRONG" ABOUT ANY OF IT - IT IS NEW TERRIOTRY FOR ME. I AM NOT LONG PAS FNISHING A VERY HEAVY-DUTY TREATMENT, AND AM FINDING MY FORWARD BLIND-FOLDED, ON THE WHOLE. I CERTAINLY WAS MAINLY TOLD THAT I WOULD BE AND FEEL A LOT BETTER AND MUCH QUICKER THAN HAS BEEN THE CASE... FOR ME THAT HAS BEEN SHOCKING, AND FRIGHTENING.... . MY INTENTION HERE IS ENTIRELY POSITIVE; TO GENERATE REAL INSIGHT AND HEALTH AND HEALING AND TO INFORM BOTH PATIENTS AND PRACTITIONERS..
eva day. xx


NOTE: please contact me if you have experiences to contribute, re post-treatment, for the next post in this series. this may be anonymous or by name, as you prefer.

Note: for those networking mainly from home via internet community: there is a post on my blog "everyday adventures in creative living" which might be relative. It looks at on-line relating and social networking, positive and more negative aspects. post is called What to Write on People's Walls:

http://eva-everydayadventures.blogspot.com/


the blog has a focus of recovery from life challenges, including illness generally, and on positive choices for community and creative living, so there may be other articles there of interest to hcv patients.



wishing you all good health and good living. eva day

Absent On the Sofa. Hepatitis C and "Brain Fog."

The normal neurological pathways are malfunctioning, so please do not expect
sense or comprehension: the treatment I've been on has a mangled brain effect.
I am the hep c patient who wanders how some system and a competent ability
can be possible, in managing any personal admin with no focus or brain agility.
Uncooperatively, the clock and calendar i consult show hours weeks months days,
which blur and fiendishly rearrange themselves, confounded by my mental haze.

I used to be quite capable and a practical type of person who'd make "to do lists."
If I try that now, they read like obscure abstract poetry, but the efficient world insists
that bills are paid, cars are taxed and hospital appointments are regularly attended.
I'm phased by tasks, and just can't draw on personal resources on which I once depended.
Gone is the once reassuring background confidence that I can tackle any basic chore.
If I have to call a help line, "please explain carefully, again, and speak slowly!" I implore.

But the person at the other end speaks just as fast, but louder, like a typical foreigner abroad.
I can't grasp what is explained, or join the dots, my once neat information processing is flawed.
Incidentally, when I earlier mentioned motor vehicle tax, I should add - I certainly ain't driving.
I need my fog and hazard lights on even as a pedestrian! there is not a chance of my surviving
complicated and overloaded activities like gears, indicators, or mirror, signal and maneuvre;
even in my own home, most days, I struggle to use the tv remote control or operate the hoover.

And yes it bothers people when they're telling me something that seems not so very complicated
and I stare blankly, am unable to reply, ask irrelevant questions, and perhaps get strangely agitated.
All this might seem very paradoxical, because, some say I often write with insight and some clarity;
So how is it cannot get my head around the ABCs of basic tasks? There is certainly much disparity
between small remote islands of imagination or and good sequential thought or ability to follow
an apparently simple everyday discussion or procedure. It's because of all the pills I had to swallow.
Those heavy duty medications I've been taking for so long have made me confused and scattered.
Yes, I do still have some brain cells, but not in good working order; scrambled, tired and battered.
And although I write this with good cheer, and a light-hearted tone, not sounding too distressed,
please understand the battle, and that I am painfully aware of how my competence has regressed.
For in this rhyming story, I want to let you know that there is sadness, loss and disconcerting fear,
that in exhaustion and befuddlement, my previous abilities and skills may permanently disappear.
I have to work each day to encourage my own thinking functions, often push past shutting down;
and I need you to be patient, understand this sad happy distracted hopeful moron in a dressing gown.

(eva day)

3 months post treatment..... expectations and realities.

This blog is the record of my journey, told alongside the experiences of others, through a damned harsh treatment. Once I got to the end of the insane and long haul slog, I found a determination to focus on new horizons and new beginnings. I started a new facebook group, a social club for hep c patients to make contact, relax together and distract from the rough days and the medical sagas.** I began two new blogs, one with a theme of healing and recovering beyond illness and struggle in general (so for hep c patients and others) and the other with a theme of just being silly and having fun. I made more contact with non-hep c friends and engaged a little in discussions on other aspects of real life. And I occasionally tried to lever myself off the sofa, do a little yoga, stand up in the kitchen long enough to cook a simple meal, etc. Meanwhile I struggled still, horribly, with the shock and the realities of end of treatment and a series of cycles of apparent improvement followed by regression back into symptoms and heavy duty reactions. I kept a diary ofpost-tx symptoms for a while - that's lost somewhere on the net where I can't access it. One things I did intend to do was to keep this blog - with it's Hep C focus - updated a little more regularly. I think I got distracted, overwhelmed, tired of the whole subject of Hep C. (I can almost "see" you nodding your heads: at this and at my earlier comment re a damned harsh treatment.)
Well: tired of it though we may be, the realities don't go away through wishing they would, but must be lived through, with the usual approach of as much patience as we can manage at any given time, and one day at a time. My experience of stopping the meds was quite a shock and quite scary. Within days I had intense reactions, such as increased migraines, vomiting and muscle spasms. Nobody had told me to expect this: what the heck was going on? I was desperately tired for a couple of weeks, would have killed for sleep and the partial relief it brings: the doctor doubled my dose of sleeping tablets, to no effect. I had a couple of horrible floods of total see-red riba rage within the first week of stopping, which unnerved me greatly. My knees swelled up to twice their normal size.....

Within the end of the first month I had first a nasty stomach bug, then a chest and sinus infection and a course of anti-biotics.
At around this time, one family member died, another became seriously ill and my membership of a previous support group came to an end and it was rock bottom.... except that we can't let it be, can we? We might have days when we just collapse in on it all. But somehow, we have to pick ourselves up enough to keep going and certainly stay on top of the basics; eat (something) wash, see the doctor, take the supplements, encourage ourselves out for a walk, talk to another human being, and so on..

I have thought hard about whether to write about post -treatment in such bleak terms. My decision, after some reflection, has been to write it as is and as I lived it. We heppers become worried that we will scare others - yet by not telling it like it is, we at the same time run the risk of obscuring the reality and ultimately confusing others and the bigger ppicture (medics as well as patients.) It's a tough dilemma, isn't it? But I made a commitment right from start of treatment that I would write openly about my experience - and not dress it up (or play it down) so I continue that commitment. And of course I know, this is not how it is for everyone. On tx or after. Our different patterns of symptoms are so so varied: some really can say - yes, within a few days of stopping the meds, I noticed: slightly improved appetite, sleeping a little better, mouth did not hurt so much and so on. Others say that months later it;s still pretty much down to the tiniest improvements only, a lot of pain and discomfort (and increased infections once the interferon jabs stop and the immune systems freaks out) and a heck of a lot of disapppointment and ffrustration plus ongoing mood swings and even increased depression.

Of those who find it more difficult - it seems to me that many do not say so, or say very little. To their doctors, to other hep c patients, to their friends and family. There are many reasons for this: but it can be a problem. I am writing about it in a series of further articles - some to be posted here and some at the blog which focuses on broader healing themes. I hope it will be useful to some, and encourage some interaction as well.
Meanwhile, I am 3 months post treatment and my take on things is that there are actually two disstinct phases. When you first stop the meds, for many - you certainly are not actually post -treatment. Many at this time (for around 2- 4 or 5 months) are in a phase better described as the EOT phase. End of Treatment phase: a period of intense transition, phsyical and chemical reactions, and mental and emotional adjustment. Don't underestimate this phase, if it happens for you: talk to your loved ones (yes I know you are tired of explaining) and to your doctor. Rest. Keep doing one day at a time. I think (hope) I am now coming to end of EOT phase, having now cleared (after a second and more heavy-duty course of anti-biotics) the last infection. So I feel like I want to shut down? Ok I allow myself days to do this: then seek to get the focus again for moving forward - but gently.

Actually I am four months post end of treatment. My 3 month pcr was delayed while I was not in a good way at peak of the last infection and with some kidney and thyroxine disruptions. Then, pretty over-due, trekked off to have the blood test, an important one: only to have been informed a couple of days back I'd received the wrong form. Wrong blood test. Cannot be bothered to rant about this - we all now the waiting game and the many delays and frustrations... Wait a little more. I feel like I lost a month. (Quite glad really, it probably wasn't a very nice one!!)

I will update with further articles on post-treatment experiences and the EOT phase: my own, and input as described by others, as I have been networking quite a bit on this theme. What I do hope, in the meantime, is that we Hep C patients will continue to tell our health care practitioners more and more how it REALLY is..... so they will perhaps stop telling other patients "you'll be pretty much back to normal within 6 0 8 weeks." Thus leaving patients damned scared and confused and effectively unsupported. The "loop effect" here I think, is that a lot of medics actually believe this: because many patients aren't telling them differently.... well we don't want to fail or be considered neurotic or make a fuss, do we? I hope we can break these cycles...

more soon, and I also wish: to YOU: good health, good friendship and support and good heart and hope. xx eva day

The newer blog which focuses on surviving and thriving beyond Hep C and other chronic illnesses or life challenges, as well as choices for positive living, is at the following link:
http://eva-everydayadventures.blogspot.com/




the blog for fun and random distractions and play is at:

http://cloudkooky.blogspot.com/


the facebook group page for social support for all hep c patients and carers: still going, and relaxed and supportive. if interested, contact me under my name via facebook.


all good wishes - eva day. xxx

new possibilities anyone?

Time to move on gradually to new pastures - in life and in new blogging and writing…… experiments. I have started two new blogs…. For those who want to read about Hepatitis C issues I will continue to post occasional offerings here….
But now that I am two months past end of treatment, and just beginning to notice signs of being less sub-human and more of a functioning being… time for so new adventures. One of the possibilities I set my sights on as I gently go forward into life again, is writing more. Developing ways to explore words, play with themes, and especially for that to be in some way about growthfulness, a meaningful life and community. Crucial themes for me in any case, but perhaps from chronic or severe illness, many of us will build an even deeper commitment to an authentic path and to a shared experience of human living. And about healing, living, discovering…
Not to get too earnest though… I do hang out at another blog, just born a baby blog called cloud kooky land,. And everything there is really all just about creativity and exploring possibilities and allowing oneself to ease up, let go and feel more free. Lots of nonsense, random curiosities, some poems, a few games and moments or snapshots of different windows to look through
Just for fun and also because it’s a great thing to encourage one another to be creative and expressive…. And for me it all starts with play. So bring toys and games and much splashy good spirit…… see you at cloud kooky land

http://cloudkooky.blogspot.com/2011/01/mi-tree-house-es-sua-treehouse.html


(will keep this blog alive with ocassional posts on Hep C issues and - I hope - some guest bloggers from time to time.)

warm wishes and hope to see you at eva-everyday adventures

http://eva-everydayadventures.blogspot.com/

skin crawls and time crawls.....

Inspired by nanooska whose blogs and website I point you towards, below, have been thinking (again) about an aspect of HCV treatment which was intensely engulfing – the passage of passing minutes, days, weeks. Like Jenny and her liver, I could not bear to mark the time. That only extended it and made me screamingly hyper-aware. So I had a sort of mental trick of pretending to myself that each day was only just one separate day or experience within. Normally one wants continuity in life. Chuck it into storage while on treatment.

I was both fascinated and appalled by time distortion effects on tx. the brain fog (dense) for me, in itself meant that I could not engage in many activities to distract and ease the relentless hours. this is so for you, for many I am sure- and i did believe I lived 48 weeks with every 24 hour period. half a tx per day (that's my maths anyway) as for the angst: I certainly had as many different varieties and themes for that as I had ribas. I think hep c and tx induces it. And dark “stuff” general along with hugely heightened perceptions and reactions. much of my own angst was linked to the passing of time, the damned unremitting sheer slog through passing hours and days. I called that version of angst my MacBeth syndrome. ("tomorrow and tomorrow and tomorrow creeps in this petty pace from day to day ....") like the scottish prince, I too was bored, even with my own angst. Yet the mostly painful and disturbing thoughts or distorted fixations continued regardless of whether I wished to turn attention to more healing or cheerful possibilities. Since I had no real choice or control over intention and no over-ride mechanisms available. So each thought in itself became very bound up with the agony of time crawling – thoughts would stretch my brain to point of physical discomfort, and seemed to be also measured in seconds and minutes, like a clock in the head. I do know many will recognise or remember this. (One post –tx friend once commented, when I had written on the time factor horrors, that recalling it made his spine turn cold) This time warping and brain fogged mental taughtness is at least as nasty as many of the aches, joint pains and other physical discomforts of the disease and it’s tx. And often a HELL of a lot more so…..

How do you actually do this – just keep on going? People on treatment sometimes ask me. (ok, often ask me, actually!) My answer? After 48 weeks of tx, I still don’t know …… I just did it since the only way out was through. Either that or back to living with the damned disease which was not a choice worth considering, since it had already bashed my life and functioning self to bits in any case. Most of us who do treatment can’t really say how….. other than that simple hint for a lifetime: one day at a time. Stay in the present. Keep things as simple and clear as possible. Tell it like it is, wherever you can. Forgive self and life, whenever you can. Reach out for friends and connection – lots. And find stepping stones. Something that makes each day feel like there was a moment of reality, a gift or a treasure. Whether that is a phone call to someone easy to talk to, a piece of music you love, laughing at something silly on tv, watching a pretty sky….. whatever nourishes your spirit. Beyond the fog and the confusion: you are blessed and you are whole.
With love and healing prayers, eva day.

Jenny's blog (hcv and tx.) http://jennysliver.blogspot.com/

other blogs: anna annmarou.blogspot.com

Ian
Hex
(see my profile list)

after treatment finishes..... ????

FOR END OF TREATMENT. BECAUSE WHEN TREATMENT IS FINISHED, FOR A WHILE IT CAN FEEL LIKE IT'S OVER...... BUT NOT. SO FOR ALL IN THAT PLACE. AND FOR ALL HEP C PATIENTS, INCLUDING THOSE WHO DO NOT OR CANNOT TREAT. AS WE ALL HAVE MANY EXPERIENCE IN COMMON. WE ARE SHARING THE DIFFERENT REALITIES WITH HONESTY AND COURAGE.



I have my horizon eyes on, ready to look ahead, to future dreams

what do I see? what awaits? hopeful yet cloudy, confused is how it seems

hard to have vision through mist or fog. brain fog. I never heard the phrase

before hep c. i think i remember a simplicity in daily life. those were the days.

times of a lost innocence; though I thought i knew so well, life's darker faces

Hep C is an intense experience which takes us to different and such surreal places



If I cannot see clearly, with strategy, plans and clear signposts to a joyful new start,

i choose to peacefully be in the present and listen to gentle guidance from the heart.

yes, it is also hard to hear clearly, both vision and instinct are obscured and uncertain

I feel as if I observe the ordinary world from a bubble or from behind an invisible curtain



where was the hoped for sense of freedom, relief, when hcv treatment had ended?

and some sense of being on solid ground with familar landscapes, on which I'd depended?

instead I found myself lost in a limbo land and feeling sore, tired, flat, empty and weary

not feeling excited, ready to set goals, as I had no reserves and everything seemed dreary.



But this too made me feel bad, I thought I was wrong or being negative, bleak not good enough.

and I talked with others who'd felt that too, more struggle after a treatment so horribly tough

we found some relief in shared insights that beyond the great battle, we meet a new fight

the people in our world may think, we are done with the meds, all is over and we are alright



and maybe, being full enveloped for so long in struggle, pain and mental and emotional distress

we forget to ease up on ourselves, allow a time of just being and not fear that it's all such a mess

I think i'm screwed up long-term by it all, and may not get me back we whisper to a good friend

yes, I have had so much courage, and patience and hope, day by long day to the finishing line

I am hurting and scared, need to feel still supported, and long to feel once again my spirit shine



and if perhaps one other person can hear this, that will help keep us hopeful, safe and steady

we may let go of too many goals and expectations and let recovery unfold, as we are ready

but the person who most needs to hear and accept is myself, knowing with in that i will just feel

a sense of reclaiming myself and my life, with renewed strength and inspiration, as I gradually heal



I send wishes to others that you be kind to yourself and hold in you heart thoughts of new flow

as the next stage of the journey unfolds, you will navigate and find your way through and grow

perhaps we are wounded: fear is there, for us all yet we may draw from it a treasure quite freeing

strength, compassion, sharing, and possibilities for new beginnings and authentic ways of being.



whatever your story, where you are in your journey, your challenges, hopes, dreams and prayers

I send you blessings, and much love, light and laughter, and thank you for being someone who cares.



with much love from eva day to all at the different stages of the Hep Journey and most especially to my wonderful friends who made each day a lot more doable. wishing a good road ahead to all. xx eva day

my tree house (in cloud kooky land)

soon will post some extracts from a diary kept from end of treatment to desribe transition and recovery (physical and the "mentals" )

just started a second bloggy bloggo..... nothing about hep c just play and nonsense and random stuff. http://cloudkooky.blogspot.com/
that link is how to get there... if you want to hang out at my tree house sometimes.
this blog will continue to be about hep c

love, eva

absent? or present? morning moods....

"Hey!!" shouts the morning, "Hey! Wake Up!! The World is Happening! Be Busy!"

"Sshhhh" says the mist, which melted my dreams and all my certainties,
through th eunampped territory and vast expanses of the long night.

"Play!" calls the Sun, from a solar station beyond a crazy cloud!
"Slowly, softly ......." whispers the moody mist.
" Sun, your rays this morning do not warm me, I am to far removed...
absent. there is no warmth in bones or muscles, no strength in
weary heart. no inspiration. I am wanting needing only to
fold myself in comfortable blankets of oblivion."

"Be Present!!" insists Sun. "This is a new day, this is a moment!
Dance! Dance!" calls out the Sun, the bossy brilliant bastard.

too bright, eyes hurt, too brilliant, mind closed down, heart in retreat.
this is a moment of mystery, a blank of peace, a blank.

"Come On!" urges Sun-Sun, swinging boldly into the sky. Crash!!
Wind shows up like sun in boisterous mood, blasts brain...
"Gently!!" mutters mist, "Wind, you so sudden so abrupt! Sun you so Solar, so Alpha, so insistent!"

"Bloody ingratitude!" snarls the Sun, getting all hot and bothered and
bounces off to put the heat on somewhere else.....

"Dance!!" whispers the mist of moody magic... and I sway slowly, gently,
letting the swirls teach me a new rhythm. taking one lyrical step and
another.... in tune to the music of this morning,

"Well, it's a start, I guess!" yells the sun, a bit beyond it, horizon wise.

I move quiet through the sahdows and mists of the day and find
soft breeze and gentle sunlight filtered through a protective mist.

9THIS POEM IS MY DESCRIPTION OF THE NEED SOMETIMES TO BE IN A HEP C OR TREATMENT BUBBLE AND OF THE DIFFERENT RHYTHMS OF EMERGING AND BEING PRESENT OR ALLOWING OURSELVES TO DISCONNECT AND REST. IT IS ONE OF THREE LINKED POEMS ... EARLY DAYS OF POST TREATMENT. THIS ONE FOR DEB Z. AND FOR EVERYONE WHO KIND OF GETS IT?)
WITH LOVE FROM EVA DAY

Not about Hep C - about living...

You do not see me, you see my disease, since I am far removed and in a a bubble
I am like a doppelganger, an inverse mirror image of myself, my own weird double.
I do not see me, but feel invasion, swallowed by this relentless virus which impacts
on every aspect of my life, and state of mind and emotions, beyond biological facts.

My body hurts and I am sick, I see my life disintegrate & my thoughts scream in pain.
friendships, work, balance, lifestyle, money, simple functioning, washed down the drain
of a black hole, this enemy that flooded organs, blood, the person and the life I built.
I went through every Hepper's turmoil of reactions, fear, loss, inadequacy, anger, guilt.

But we allow, accept these responses if we meet the fight with spirit and with faith.
even when spirit seemed absent and I felt I was a shadow, empty, ghostly, like a wraith.
though I was lonely, yet I did not wish for you to see me, all I wanted was to hide.
I longed to feel connected but needed to be invisible, disappear behind a wall of pride.

Was it painful when you watched me struggle to stay active, mumble when I tried to speak?
Feeling that I looked like crap, and with mood swings & confusion must seem such a freak.
It was sweet and sad to see your kindness in watching for me when I started to crumble
understanding, patience as my body became weaker and thoughts and feelings such a jumble.

you've missed me yet I've been here & so have you: I needed you to be able to stay close.
But not expect me to respond, do, engage: and to do I did not wish to be vacant or morose.
Thank you and please know you did not see me, the person: you saw the virus take a grip.
It is calming when a friend was a safe presence when I felt my screaming mind would rip.

And yet I know, you did see me, in a deeper, more whole sense, beneath the foggy layers.
For the times you waited, listened, were gently there for me, I hold you in my prayers.
I was bored with living, talking, thinking, swamped with HCV; nothing else had a place.
And now the greatest heat of battle eases of, we need some relief and breathing space.

As new beginnings offer promise, and recovery unfolds, let's walk that road together.
I talked of mists, wind, sun. You were a good companion through every kind of weather.
There is no loss, no struggle, fear, blame or doubt that a dragon fighter cannot release,
In shared support & the beautiful kindness of those who believe in healing & in peace.


with much love to all sharing the dragon fighters battle, eva day. xx

THIS IS ONE OF THREE POEMS WRITTEN TWO MONTHS AFTER END OF TREATMENT, LOOKING AT HOW TO MEET EACH DAY THROUGH SLOW RECOVERY AND TO BEGIN TO LOOK TO NEW HORIZONS AND RECLAIMING LIFE.....

box full of crap at xmas????

A BOX FULL OF CRAP.

Hey, look, if you you feeling really festive, and enjoying that, and it’s genuinely a relief and respite from sickness/ treatment/ Hep C /// good on ya, and please wander off somewhere else and maybe not even read this. Unless you want to get sense of how others might be feeling bloody bleak with it all. Or you are one of those who is feeling that way in which case, hopefully this is at least some kind of space for acknowledging and allowing that.

So; first part of this was written on Boxing Day and I was thinking about .. boxes. Yeah, I think about some really weird stuff, quite often, more and more the further along the surreal HCV road I go. Should I worry about this??? And certainly sometimes I do – fear that the whole package has fundamentally mangled up both my brain and personality and the other eva is.. gone. Or should I regard to it as maybe a positive thing...... a sort of interesting (if sometimes awful and demented and tiring) adventure into broader and more varied perspectives of life and an expanding of possibilities and awareness of life, self and others realities?

Which leads me neatly back into the thing about boxes. I hate, instinctively, so many of the kind of social attitudes and conventions which close us in or narrow our experience, attempt to categorise us and create divisions from others or from aspects of own self and of life. Always have done and Hep C anyway tends to build it;s own box around you....... especially if you go through periods of being housebound (what a prison type box that can be) or struggle to communicate (boxed in to own silent but lonely world... pretty damned painful.)

And no, I am not going to draw on much over-worked popular cliché of “thinking outside the box” – it’s probably become pretty meaningless and often these days just means.... having a good idea. Or suggestion no one else had yet meant. But as a symbol a box is still a good one for the kind of limitations and trapped feeling I am describing. And the obligation (real of imagined / conditioned) to Have A Good Time at Christmas and do the whole thing. Magic, if that’s really where you are, but how may sick people have felt like they acted it all through like a Charade – when actually they were bloody tired and just wanted Christmas (and everyone) to Go Away???

Most years, I really enjoy Christmas and all the fun and magic (different to hating all the commercial or forced aspects of it.) This year, I just felt totally disengaged, ill, tired and past it. Like So What? Aware of feelings of good will and caring sentiments to others, but thinking – well I think that would be so regardless of the calendar date.
Felt lonely, miserable, isolated and fed up for much of Christmas Day and Boxing Day. Not anyone’s fault. Husband and daughter were with me, and both being delightful, and mellow and easy. And not putting expectations on me. Big ups to them. And we are all pretty straight with each other, so I did tell them (without too much angst) how damned lousy I was feeling. But of course, selfish moments we may have when ill but we do want to be fair on others. So yeah, there were a few moments when I quietly tucked self in bedroom and had tears and releasing hurt of such relentless struggle over the last few years. And total trashing of normal life. And damned disappointment (plus some guilt and inadequacy of course) at hardly being able to play half a simple board game, watch a tv programme and understand it or do nice things with loved ones. Didn’t cook, clear up or really contribute anything to them. Except hope and appreciation.
So I didn’t so much have Fairy Tale expectations of what I thought Christmas should be ... I think it was more that it highlighted a sort of over-view of the whole journey over years of illness. And intense post-tx frustration and not... being better than I am yet. Which i had certainly anticipated.
There must be so so many people who are ill with this diease who are in really difficult circumstances. Perhaps alone a lot, or don’t have family/friends/carers to help them keep going one day at a time. And certainly i know a number of people with broken relationships, real financial problems, impossible work situations, secondary or co-morbid health conditions and all sorts of challenges.

Not Scroogey or dour or anything except pretty understandable if some just feel like gritting their teeth and wanting Xmas and New Year to be done and gone. Maybe those who feel that way need some kind of network or club where they can at least have the chance to see..... oh god, it is sad and hard.
But its aint just Christmas. It is finding ways to relate or make sense of all the apparently normal conventions and routines of everyday life and lifestyle of people out there in the big wide world, everyday world of normality.

Sometimes – simple things that others take for granted become more and more remote and unreal.. Distant memories or just material of “yup, I am on another planet, feel like an alien.” I am talking about matter of fact stuff (for functioning people) like driving, going to a shop, pottering around the house, following current affairs – which to me these days seem like science fiction and very strange and far away. Or caring about things that used to be important fundamentals.... like even how clean and tidy is your house? Well , I do care, but I like many have quite simply HAD to let a lot of things go.

Can’t remember what it feels like to actually go out and visit someone else’s home. But was remembering that standard phrase people use when they welcome you on arrival..... “So sorry about the mess!” Ha!! I would laugh. Live with Hep C for a few years and you will get past apologising for:
The “mess” the horrible bad hair days the fact that you cannot hold a coherent conversation and not having replied to phone calls messages or answered front door for one million years. Also having lost all sense of style and fashion consciousness, not bothering to pretend you like your neighbours anymore or even can be bothered to speak to them and not remembering anyone’s birthday or having the patience to not scream at people standing in shop doorways if ever you do venture out.

Also
Recently, in the news, in bad, snowy weather..... and old man feel in the snow. He lay in the street for six hours...... half unconscious and helpless, while people walked past him. SIX HOURS. What kind of a world is that to live in??? When somebody finally intervened, and helped and got him an ambulance – turned out no he wasn’t some useless old drunk not worthy of care (not my attitude, just one that seems to be out there) but a guy who had collapsed with minor stroke and undiagnosed infection..... who could have bloody well died of hypothermia.
So I just think that Christmas or not... a kind world as much as possible, and some community, awareness and belonging, is more important than any fancy baubles on a tree, the best stuffing for your organic Celebrity Chef Turkey Recipe or whether to invite a colleague you never even talk to the rest of the year to drop in for a sherry. Cynical – no I don’t think so. Was thinking about those years when things are tough (though maybe you look back now and realise they weren’t that grim compared to Hep C) and you got out the Xmas decs and they looked like a box of sad old crap.... I was imagining, earlier, what my box of trimmings and decorations would have looked like this year, had I bothered to decorate. Which I did not, was to uninterested and damned tired and priority becomes about just where and how you channel any energy you do manage to summon.
Well, I pictured a few strands of bedraggled grey tinsel and some shabby khaki (or kacky?) coloured baubles. Yeah, well at least that made me laugh..... sometimes I think Hep C is like a box of crap .

Oh well, New Year soon, have a happy and upbeat one and I DO wish you new beginnings (postivie) and better road ahead. Xxx love eva

an authentic experience????

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.

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

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

Comment ·LikeUnlike · Share

"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)

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

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!)

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

black holes and all that

“I feel like I am loosing myself ... or have already lost myself. As if I don’t exist and am falling into oblivion..... and all my anchors to the normal world have been unhooked; I am floating emptily in nothingness.”

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 didn’t.

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.