Tuesday, 12 July 2011

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

Sunday, 3 April 2011

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

Thursday, 24 March 2011

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.

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...

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:


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

Saturday, 19 March 2011

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)

Tuesday, 8 March 2011

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:

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


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

Tuesday, 11 January 2011

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


(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


Monday, 10 January 2011

skin crawls and time crawls.....

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

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

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

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

other blogs: anna annmarou.blogspot.com

(see my profile list)