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.

MOSTLY QUIZZICAL

Tx Quiz (treatment assessment)
this quiz is deisgned to help you evaluate and manage your treatment:

1) What is your basic attitude to treatment?
a) “Die, fekkin virus, die!” (DFVD)
b) “Aaaaaaaaagh!”
c) Transcendent./ Deliberately Oblivious./ ohhhhhmmmm...
d) What? Huh? I thought I was on youtube?
e) I, eat research documents for breakfast and I am a Trekky as well

2) Which metaphor do you prefer?
a) Dragon slayers, of course. (DFVD, etc)
b) This is an effin roller –coaster. Why am I upside down and puking? Or have I been shipwrecked?
c) travellers in the wilderness on a powerful journey pass the duchy to the left hand side
d) Oh god, the dogs been sick all over my feet and i had cornflakes for brekkie and I just puked them up all over the dog
e) I don’t.

3) What triggers riba rage?
a) My boss, my next door neighbour, the next-door neighbour’s dog, my best friend, brushing my hair, my best friend;s dog, any sound whatsoever and this effin quiz
b) I can’t remember, I just ripped off my own head and ate it!
c) Well I would get wired up but I am just too knackered... am living on the sofa. No, the ceiling. Ok, I am actually bouncing between the two
d) I suppose so I think i read about that somewhere ....errm not sure if I have pressed the right button.....
e) Ribaviran causes riba rage. Although actually, it’s probably often down to the interferon....... so the term is something of a misnomer.....

4) My doctor is :
a) Probably hiding under the desk cos I’m on my way in to the surgery. Be afraid ....
b) Chained to my bedpost
c) Made of quartz crystal and transmitting alien messages
d) AWOL. And so am I ......
e) Doing his homework for an exam I have set for him........

ANSWERS:
MOSTLY Absent. none of this bears any relation to the answers given i have no idea what i am talking about and you no longer remember what is supposedly normal – but you will get through.
MOSTLY Bonkers. cos you reckon it’s the only way to be. you have an invisible friend who sometimes writes messages on your behalf......
MOSTLY Comatose. your blanket is now a sacred relic and the remote control is symbiotically experiencing all this along with you
MOSTLY Don’t Know. You should skip D and go straight to E: you are in the middle of a white noise zone. Hold on to your towel and everything will be ok....
MOSTLY Elvin. Your name is Elvin and you are the invisible friend of another hepper, earlier mentioned. Although this can be confusing; you do have a very balanced attitude in between the fits of hysteria ...

MOSTLY eefFFed. Yup!! That just says it all..........



NOTE; THE MAKER OF THIS QUIZ HAS LEFT THE PLANET AND ANY RESEMBLANCE TO REAL LIFE IS PURELY COINCIDENTAL. ANY REPLIES SHOULD BE ADDRESSED TO
ELVIN AND FRIENDS, THE LOST IN TRANSLATION SOCIETY, . BOX: HCV 1A OMG.

love, eva.

difficult people, difficult me .....

HCV – both the disease and the treatment – has hugely affected the way that I relate to people and the world at large. And, on a very profound level, the way that I relate to myself.
I feel that I have stepped out of everyday life and into another zone – beyond the reach or understanding of many friends and family. People begin to quietly drift away. Others step forward briefly and offer advice, wisdom (maybe platitudes) which sound to me like full stop or an avoidance, rather than a real dialogue. Of course I have to accept that. If people outside of this experience cannot connect and need to distance themselves, then banging on their door or demanding greater awareness will only cause further fear and discomfort – for me perhaps even more than for the other person....
So it can get very lonely. Who am I now? That’s the lost voice chanting inside, for many of us. So much is stripped away – depending on how hard the symptoms hit you at different times. we may loose;

our working life and career; family support and interaction; friendship, companionship, community and social life; primary relationships, even a marriage; our appetite and our hair; our mobility and opportunity for simple leisure pursuits and past-times; our concentration, comprehension and even simple ability to distract ourselves (from pretty constant discomfort) and our sense of perspective, sanity and proportion.
Anchors, familiar routines and interactions, any basic sense of flow or rythm in life – all gone. We experience a feeling of disintegration, alienation, loss, loneliness. And still, within that empty space, we need to somehow find the courage and resourceful to remain positive, brave, optimistic. As the rest of the world will often tell us – on those days when we do take the risk to reach out and tell someone else how it is.

A dismissive and curt “you’ll come through ......” from a friend or family member who you thought was a special part of your life; followed by months of silence and their conspicuous absence. I guess we all know the hurt and loneliness of that one. If only that person could for a moment imagine the difference it might have made if they had simply been able to say:
“I am listening. “ I don’t know how to help but I do care.” Or “I am sorry I don’t always know how to respond ...... what do you need right now?”
And there are times – for those of us actively in touch with other Heppers – when even contact people within the Hep C Community may make us feel lonely, confused, discordant. Generally, with all the good and supportive intention between HCV patients, this is usually down to crossed wires rather than deliberate bloody-mindedness. And to the reality that we’re all sick and struggling and with scrambled circuits. (actually, given the stressors, perhaps it’s a testament to the strength of this community that we don’t fall out more often....?-)
Illness and treatment has been a very isolated experience for me and that isolation has affected me in so many ways. I am sure many others will understand this. For a general self-sufficient person – I certainly have discovered that there is another very fundamental instinct within us that needs people, community, company and belonging.

Unfortunately, through this tough haul battling the virus; it is the nature of the beast that we are also going to become confused, disrupted in our thinking and ability to interact, and just plain mixed-up. So this may result in times when we alienate others.
In my case, generally I have had pretty good social skills and am a sociable being my nature. Never in my life have I experienced such a time of discord and loss of harmony in my relations with others, individually, and with the world at large. A fair amount of it is down to the perversities and complexities of human nature; some of it is down to my own agitation and emotional disruption on treatment. Sometimes I have confused or pissed off other people (with no intention to do so.) Or at other times, I am intense and full of highly charged psychic energy and some people just can’t handle me. On one level I am totally accepting and detached about this and on another level it is sll very painful and I have no real insight or conclusions other than it demands huge levels of absolute faith on a daily basis that:

*You are not loosing your spirit and basic identity; this too will pass...
* you forgive yourself and accept your struggles as part of the experience and not a reality of who you basically are
* you may re-evaluate how you understand your place in the world, your relationships and friendships, and even your sense of trust in life, self and others and this process may feel like your heart is open and raw and wounded. But you will heal if you believe you can and ultimately you can forgive: other and – again – yourself.
* you choose to believe that you can have the grace to look honestly at the harshness of life at times, yet still hold on to the hope and the beauty and the kindness where it is given; and to hold on to each moment of that to nuture you.
* I am not my illness; I am not my symptoms; I am not my pain or anger or confusion. I am simply me, living through a huge challenge and doing my best each step of the way. Along this path, I may have been hurt, and perhaps hurt or confused others at times. We are all human with all our strengths and weaknesses. we can choose to approach each day as a potential new beginning and to believe in community and kindness.
With love, eva (eva day)

Letter to my Hepatitis C Nurse

I wrote this open letter, following a series of very difficult visits with my Hepatitis C nurse; during which sessions, I felt misinformed and spoken to in a very unhelpful way. Not good for keeping treatment on track (in terms of good health information0 or for general morale. The idea and format for this letter was inspired by a letter originally written by Bek Oberin. If you want to read that original letter - please visit support forum Hep C Nomads. (HepCNomads.co.uk) search Letter to People Without Hep C - by Bek Oberin. This version: letter to my Hep C nurse, is intended either as an encouragement, in itself, to patients, especially those who have had difficult sessions with medics; or as a letter to be printed and handed to health care professionals, as needed. good health to you all. xxx eva
BEFORE I CAME TO SEE YOU FOR MY FIRST APPOINTMENT, I HAD ALREADY BEEN ILL FOR A LONG TIME..... I WAS TIRED, AND ACHING, AND NAUSEAUS – AND WITH NUMEROUS UNEXPLAINED SYMPTOMS. I DIDN’T KNOW I HAD HEPATITIS C. I DIDN’T EVEN KNOW WHAT IT WAS. BUT IT HAD CHANGED MY WORLD – ERODED MY QUALITY OF LIFE IN SO MANY WAYS. AND I NEED YOU TO UNDERSTAND THAT THROUGH ALL THAT TIME, WHEN I HAD BEEN STRUGGLING SO MUCH WITH MY HEALTH, I HAD ALREADY SEEN MANY DIFFERENT DOCTORS AND HEALTH PRACTITIONERS. MANY OF WHOM HAD SENT ME AWAY, TELLING ME IN EFFECT THERE WAS NOTHING WRONG WITH ME ... OR IT WOULD PASS... OR PERHAPS, THAT I WAS NEUROTIC.
SO I HAVEN’T ARRIVED TODAY WITH A BLANK CANVAS. I AM ALREADY FEELING ANXIOUS, AND YES, A LITTLE LACKING IN CONFIDENCE OF MY OVERALL HEALTH CARE.
PLEASE UNDERSTAND, THOUGH, THAT I CARE ABOUT MY LIFE AND MY HEALTH. I WANT TO GET WELL: FOR ME, FOR MY FAMILY AND FRIENDS, MY WORK, AND ALL THE THINGS THAT MAKE FOR A FULL AND ACTIVE LIFE. SO WHEN I ASK YOU QUESTIONS, IT IS BECAUSE I WANT TO LEARN AND TO KNOW HOW TO MANAGE MY TREATMENT – WITH YOUR HELP – SO THAT I CAN MAXIMISE MY CHANCE OF CLEARING THIS HORRIBLE VIRUS.

PLEASE REALISE THAT I DON’T HAVE A NOTEBOOK IN ORDER TO READ FROM A CHECK-LIST INTENDED TO CHALLENGE YOU AND YOUR EXPERIENCE. MY CHECKLIST IS TO HELP ME GATHER MY THOUGHTS – AND TO ENABLE BOTH OF US TO WORK WELL TOGETHER AND BE SURE WE HAVE CLARIFIED ESSENTIALS. I AM JUST FINDING OUT ABOUT HEPATITIS C.AND I NEED YOU TO KNOW THERE'S BEEN A PERIOD OF A LOT OF ADJUSTMENTS AND A HUGE LEARNING CURVE. THROUGHOUT MY TREATMENT, BECAUSE I AM SICK, AND MY CONCENTRATION IS AFFECTED, I ASK YOU TO BEAR WITH ME, IF I SOMETIMES NEED TO REINFORCE THE FACTS OR ASK FOR FURTHER EXPLANATIONS.
I REALISE FROM YOUR RESPONSES THAT SOMETIMES, YOU MIGHT THINK THAT I AM TRYING TO PIECE TOGETHER TOO MUCH SPECIALISED KNOWLEDGE. SOMETIMES, WITH VARIOUS MEDICS, IT SEEMS AS IF IT’S REGARDED AS INAPPROPRIATE,EVEN ODD BEHAVIOUR, WHEN I WANT TO ASK ABOUT AND PROPERLY UNDERSTAND MY OWN BODY, MY BLOOD, MY TREATMENT. I ASK THAT EVEN IF I SOMETIMES MISUNDERSTAND CERTAIN THINGS – YOU WILL PLEASE BE PATIENT, AND LISTEN AS I PIECE THINGS TOGETHER. IN WHAT I SAY, THERE MAY BE NEW LEARNING AND MATERIAL WHICH IS USEFUL TO YOUR PRACTICE, BOTH IN WORKING WITH ME AND FOR YOUR OTHER PATIENTS TOO.
I WOULD LIKE YOU TO KNOW THAT WHEN I RESEARCH MATERIAL, THROUGH SUPPORT GROUPS, AND ORGANISATIONS OR THE WEB AND INTERNET FORUMS, I AM NOT OBSSESSIVE OR UNSTABLE. I AM LINKING UP WITH OTHER PATIENTS WHO INCREASINGLY UNDERSTAND WHAT A POSITIVE AND REAL DIFFERENCE IT CAN MAKE TO SHARE EXPERIENCE AND INFORMATION. WE ARE BEING PROACTIVE AND HELPING OURSELVES AND EACH OTHER – AND HOPING TO ENCOURAGE GREATER UNDERSTANDING OF THIS DISEASE. BOTH FOR OURSELVES AND ONE ANOTHER, THE GENERAL PUBLIC AND THE HEALTH SERVICE. PLEASE DON’T ASSUME THAT I AM SO NAIVE AND UNAWARE THAT I AM GOING TO SOAK UP ANYTHING I AM FED, VIA THESE OTHER SOURCES, WITHOUT DISCUSSION OR DISCRIMINATION. I AM SENSIBLE ENOUGH TO COME AND ASK QUESTIONS AND CROSS-REFERENCE. AND YET I STILL DO APPRECIATE IT IF YOU GIVE ME FURTHER GUIDELINES OR EXPLANATIONS.
AND WHEN YOU DON’T KNOW THE ANSWER, I APPRECIATE IT WHEN YOU TELL ME SO, AND OFFER TO CHECK IT OUT FOR ME – OR POINT ME IN THE RIGHT DIRECTION. IF YOU LISTEN AND BE PATIENT WHEN I STUMBLE – BECAUSE, AGAIN, REMEMBER, HEPATITIS C AND TREATMENT ERRATICALLY AFFECTS MY CONCENTRATION – SOMETIMES, I MAY HAVE DISCOVERED KEY FACTS ABOUT NEW RESEARCH, OR TREATMENT MANAGEMENT, WHICH COULD BE HELPFUL TO YOU AND YOUR CLINIC.

OF COURSE I RECOGNISE HOW MUCH YOU KNOW ABOUT HEPATIS C AND I REALISE YOU HAVE EXPERIENCE, AND GUIDELINES TO FOLLOW. I HOPE YOU CAN RESPECT ME, TOO, AND REMEMBER THAT I AM NOT THE SAME AS EVERY OTHER HCV PATIENT WHO YOU SEE. I NEED YOU TO KNOW A LITTLE BIT ABOUT MY PERSONAL CIRCUMSTANCES, MY REAL LIFE AND DAY-TO-DAY SITUATION AND HOW IT IS AFFECTED. ALSO HOW MY CIRCUMSTANCES MAY AFFECT MY TREATMENT. IT MAKES A DIFFERENCE WHEN YOU USE MY NAME, AND REMEMBER SOME SMALL, PERSONAL DETAILS ABOUT MY LIFE, WHICH I HAVE TOLD YOU.
PLEASE ASK ME HOW I AM AND WHO CARES FOR ME. I NEED YOU TO KNOW WHAT IS MY SUPPORT NETWORK – OR LACK OF ONE. AND TO HAVE SOME PICTURE OR HOW MUCH I AM STRUGGLING TO CONTINUE WORK, OR COPE WITH THE DISAPPOINTMENT OF STOPPPING WORK. DO YOU KNOW IF I AM BECOMING ISOLATED? IF MY FAMILY ARE STRUGGLING TO COPE WITH THE TREATMENT AND IT’S EFFECT ON ME? PERHAPS I HAVE NOT KNOWN HOW TO EXPLAIN THE LEVEL OF DEPRESSION OR MOOD SWINGS THAT ARE AFFECTING ME – OR JUST HOW HARD IT IS TO FEEL AFRAID TO TELL CERTAIN PEOPLE IN MY LIFE ABOUT THIS DISEASE
AND ESPECIALLY, WHILE I GO THROUGH TREATMENT, I NEED YOU TO BE SOMEONE I CAN TALK TO AND CAN TRUST. SOMEONE WHO UNDERSTANDS THAT I DO THIS DAY BY DAY AND WEEK BY WEEK AND SOME DAYS ARE TOUGHER THAN OTHERS. THAT SOMETIMES I FEEL AFRAID, ANGRY, DISCOURAGED OR FRUSTRATED - AND JUST VERY, VERY TIRED.

I NEED TO FEEL COMFORTABLE WHEN I COME AND SEE YOU – NOT WARY AND WORRIED. COMFORTABLE THAT YOU ARE AN ALLY AND WILL HELP MAKE THE JOURNEY AS SMOOTH AS POSSIBLE FOR ME. PLEASE RECOGNISE THAT I AM FINDING THE SIGNPOSTS AND THE TRAVELLING COMPANIONS ALONG THE WAY – AS WELL AS DOING THE LONELY STRETCHES WITH AS MUCH COURAGE AND DETERMINATION AS I CAN. WHEN YOU HELP MAKE THE ROAD AHEAD MORE CLEAR – WE CAN BOTH KNOW THAT IT IS ME THAT HAS TO TAKE EACH STEP. THANKYOU.
(written by eva day.)

The Red Pill - or the Purple Pill?

No, this is nothing to do with a variation on The Matrix! The title comes from a debate over the colour of the pills I want to write about. My daughter says - they are red. I say that they are a kind of purplish-red; and that therefore, I can write about them as The Purple Pills, for the sake of alliteration. She urges accuracy. You take your pick!
In any case, they feature prominently in my day, after I discovered them last night, in the bottom of my hospital overnight bag.

Wednesday, I did my interferon jab in the morning, and went off to the hospital for a minor operation, expecting to be home that evening. But the last time I had day surgery, there were slight complications afterwards, and they ended up keeping me in overnight. Of course,then, I didn't have any personal items with me, and it was a bit annoying. So, via the perverse laws of Sod, I figured that if I did have an overnight bag with me this time, then all would go well, and of course, I wouldn't need it. This worked - ha! Sod was foiled! I came home, was hellish to be around for about an hour, apparently, and then settled down back on the sofa again, to rest up and recover. Spare toiletries, pajamas, etc, have remained in the bag, unpacked for the last few days. Shocking, isn't it?! You would be appalled at how shoddy I am being just now.

Yesterday evening (Saturday) after being miserable and at odds with myself and the world for much of the day, while my daughter zoned out on mobile phone games, I was sprawling pathetically on the sofa feeling thouroughly sorry for myself. I finally decided to rally and set a few small goals, to arrive at some sense of achievement and to haul myself out of the pits of a foul mood. A little bit of pottering and clearing up was a start; whatever could be done one-handed, as left hand is in splint and sling.

Time to put away bits and pieces that were still in the hospital bag, which was dumped on top of a pile of un-sorted laundry. Emptying the bag, I found, at the bottom, a packet of pills. They are called Lofepramine, and are a sort of reddish-purple colour, as mother and daughter discussed. They are my anti-depressants. I took them down to the kitchen, to put away with the rest of my extensive pharmacy stock. Realising it wass nearly time to take my evening medications anyway - only 20 minutes off regular time - I decided to have a banana and a bit of toast, and take them early.

So I grabbed my pill box (all very well organised) and noticed that in each compartment, marked for the days of the week, am and pm, there were the familiar assortment; tiny, white tablets, fat, round yellow ones, small green capsules, and the very important oval pinkish coloured Ribavirin tablets. It all looks a bit like a pick 'n' mix. No reddish-purple ones, though. Moment of realisation! It seems I hadn't loaded my anti-depressants in, along with the others, on Weds morning before doing my injection and going off for my op. The normal routine for me is to do my jab and Wednesday mornings, and re-stock my pill box. But clearly, something had gone pear-shaped with my well-executed (or so I thought) preparations before going to hospital. I had taken some extra meds in my bag just in case - but I hadn't re-stocked the pill box properly. So, of course, though unaware of this, I hadn't been taking my anti-depressants for the last few days. Ok, I think, bloody typical; if I was going to omit a pill - it had to be the damned AD's, didn't it? (Blood pressure, anti-histamines, all the various supplements, they are all there.) Then I think; well, thank god it wasn't the riba; fortuntely I am right on track with them.

I had, before that, found myself wondering about the fact that I had been feeling fogged, weepy, angry; and curiously, both full of self-pity yet strangely determined to put on a cheerful head - tell myself and everyone that "I am fine, absolutely fine." Surely not still the anaesthetic, after a few days? And this is more intense, I am sure, than my usual post-jab response. Perhaps it's also because I am missing my husband, who is abroad for a couple of weeks? And now I am also thinking; well there is another key ingredient also; I haven't been taking my anti-depressants for the last few days.

On a practical level, apart from missing his presence, I recognise that had my husband been here, he would have done most (ok - all!) of the basic chores, and I would have concentrated, and sorted my pills properly, instead of wondering around in pointless circles, thinking I was being efficient.

The morals of the story are: a pill box is a wonderful thing, if (like any system) you actually use it properly. A good husband is worth his weight in tablets as well as gold. And some of us on treatment are beyond all sense, without our anti-depressants.

May all your tablets be taken, your capsules consumed and your pills be popped!
I missed a couple of days ADs once before, by mistake. Either we live and learn, or we repeat the same mistakes, again. And sometimes - again! A lot depends on circumstances. And brain fog, of course.

xx eva

emotional well-being on treatment. PART 2

MANAGING EMOTIONAL SIDE EFFECTS ON HCV TREATMENT:

PART TWO. PATIENTS EXPERIENCES.

for broader over-view, please read Part One first. (There you will also find links to more background information and to support options) Many patients will experience at least some occassional milder mood changes; having a realistic understanding of wha to expect during treatment does help.* Some people will have more intense reactions or go through periods when they do; these articles are to help understanding for them as well as their family or friends. .

PERSONAL EXPERIENCES
Individuals stories, and thought to hold on to if ever you do “loose the plot” and wonder what the heck is going on with you. I did say “weird and vacant.” Vacant was how I felt when i was: volatile, anxious, confused, angry, neurotic and tearful. I add this note as a direct description of my own experience - and a sort of anchor, to help you remember; No blame, no shame: remember it’s the meds and chemical reactions, as well as normal human responses to illness and struggle. Hold on to humour and as many routines as you can, to stabilise and normalise your days. You will emerge, stronger, wiser and more resilient than ever ..... and I hope: virus –free. Here is what some other patients said when asked "what were the most difficult side effects of treatment?" (many patients have only mild reactions in this area: others experience it more, as did these people.)
"The mind stuff is certainly the worst. The feeling of being absolutely useless at everything I once took for granted; like being able to process information. This and the insomnia which makes it 100x worse.“bugs”
(note: due to secondary health issues, at one point this person had to choose whether to cease or to continue treatment, when chances of successful outcome were looking like they were seriously reduced. Despite having suffered the “Weird” effects, this person chose to continue: stronger than ever before and determined to fight the disease.)
"I have done two treatments, one without Ad’s and one with. I thought I was fine with the 1st treatment, but in fact I was not. The interferon had bought and booked me onto the crazy train - and I was not even aware I was going for the ride. The 2nd treatment, with Anti-Depressants, was still challenging- emotionally and mentally. ut at least I had a footing and base to keep things together.

Some folks do just fine without the Ad’s (but in my opinion ) they could be on the train and just don’t realize it. I have yet to come across anyone in all my time in Hep C circles, that wasn’t affected by the Interferon in some way mentally. For some these are just subtle changes; but for some these changes are drastic. Again this is just my opinion but I believe they are a very important component to treatment and should be started before Tx begins to get the full affect. I’m also of the mind that the pre-treatment stress and anxiety calls for anti-depressants, for some folks as a norm. (M. G.)"
(this patient did not clear the virus, but continues to support others through effective management of treatment, to maximise chances of full recovery.)

"The worst side effect is the mood swings caused by Interferon Alpha.Some experience full-on depression, but with me it was full-on anger and impatience .This manifestation didn't much hurt me, but everyone around me , like my family (my immediate one), who had to endure hell for the weeks when I denied I had an anger and impatience problem on treatment. .For the whole of my 2nd treatment , I managed the brain chemistry changes with Citalopram, and fluctuated between 20-40mg per day.However, my 1st treatment was different, on this treatment, I held-out until week 24 without an SSRI and my wife (carer) and daughter suffered horrifically. It was at week 24 that I was frog marched to the GP, by my wife, for some SSRI's , apparently I was a puppy-dog within 48 hrs of taking them .So why is uncontrollable anger and impatience the worst side effect of HCV Combined Therapy?Because, if left to go untreated (unmanaged) , it can destroy a long-term marriage, relationship between partners and destroy a parental relationship .In my case, it did not result in this terrible outcome to treatment. But I've heard enough patient stories to now realise that it happens very frequently" .Ross xxx
(note: 1st treatment did not succeed for this patient. Despite his experiences of mood reactions described, he chose to undergo treatment a 2nd time, in a commitment to clearing the virus. On 2nd round, happily he won the battle. For info re anti-depressants, please see links in Part One)
"Depression, Anger, Anxiety and generally being out of my mind. I got so emotionally unhinged at the end that I looked like and acted like those weird crazy people you avoid if seen in public. I knew it, but could not stop it. I just had to roll with it because I was not going to stop tx. This was with taking anti-d's. I shudder to think how horrid I would have been without, as I was horrid enough with them." Peek.
(note; this patient has done treatment twice and has elsewhere stated that had she not cleared the virus; would do treatment again, if she had to...Fortunately she is now post-treatment, virus free and recovering well. )

An overview of outcomes for people I have known through support forum and internet connection: Of those who have completed treatment and cleared the virus .... despite the more unpleasant aspects of mental or emotional sides .... none has said that they regret undergoing treatment.
Of those who unfortunately did not clear the virus, many have continued and done treatment a second time, even those who found emotional reactions challenging: they were prepared to ride these side effects through again in order to beat the disease.
Even where outcome of clearing virus completely was not successful; viral load and liver damage, as well as other Hep C symptoms, are likely to be greatly reduced in any event; thus minimising health problems and improving potential quality of life and longevity.

For those patients who did not clear, although there will have been initial feelings of anger and resentment at the experience of treatment; but the longer-term outcome, once they have recovered from intitial shock, is eventual acceptance. And recognition of the alleviation they will have achieved. And so, generally , without regret; but, instead, glad that they had undertaken treatment - and often waiting for an opportunity for re-treatment or new trials, in determination to be clear of HCV. I have read a comment by one person who was an exception to this trend; sadly this person had experienced other very complicated personal circumstance during and just after treatment.

This closing thought is offered as those making the choice to begin treatment, and to those experiencing he more difficult periods. Keep fighting ... HCV can be a very serious disease and so the battle is worth it. Wishing you peace, courage, as smooth a ride as possible, good support; and good health, good living!
xxx eva day

* please see separate article (to be posted soon) re studies showing how realistic expectations of treatment, before commencing, can make a great difference to successful management of treatment.

** also, to be posted in future; notes specifically discussing experiences of temporarily reduced concentration, general thinking skills and recovery of cognition, post treatment.

managing emotional well-being on treatment

Why do I feel Weird and Vacant?
This is a basic over-view of emotional and mental reactions Hep C patients might experience, while on treatment. . For explanation of medical causes, and for further information, please follow links given at end of article.
I’m calling it the weird experience because during treatment, general perception of day to day reality can feel very surreal.
I use the word “weird” as an anacronym and in a lightly humorous way. This is about getting past concerns of there being something “wrong” with us when we experience these emotional reactions on treatment. So, with a little gentle laughter and relief from fear: weird stands for
Withdrawn, Emotive; Irritable; Reactive; Depressed. ......
Ok; sounds pretty unpleasant?! These sides vary, amongst different patients, from minimal and transitory – to more extreme. In general, for sure, treatment is no picnic. Even if you do remain fairly level most of the time ...... there are likely to be moments....
My own take is that treatment is a commitment, and can be tough: but worth it with the end goal in sight. Clearing the virus.
. Having a clear and realistic sense of what treatment entails is one of the best foundations for managing it well and successful outcome. Some people do find the mental effects worse than some of the physical side effects. But, with the right medical and social support, they are manageable and it is doable. So here are some of the more common experiences;
Withdrawn. Fatigue, discomfort and irritability may make you tend to absent or isolate yourself. . Some retreat may be part of the process of diverting energy into fighting the virus. Too much disconnect, though, will exacerbate depression. Try to step out of the bubble and interact, even briefly, as regularly as possible, without becoming exhausted.
Emotive. Emotions and perceptions may become heightened. For example; anxiety; feeling weepy; sudden and intense changes of mood or odd thoughts, paranoia. etc. . without always knowing what is the trigger. Keep an eye on your sleeping patterns. Insomnia can make this more severe.
Irritability. Pretty common: from irritation at things that wouldn’t normally bother you, to full-blown fury .(Often referred to as “Riba Rage”, named for the Ribaviran.) -Hopefully, friends and family will understand some edginess and and ride out even the occasional more extreme reactions. It may be reasonably containable: but , if it reaches the level of aggression, or potential abuse; get help. . (see quote by “Ross” and others, below in Part Two.)
Reactive.
Your thoughts and your interactions with others – can be magnified –at times you may be hyper-sensitive: a minor concern, suddenly becomes a compelling fixation or a slight disappointment suddenly is hugely unfair .... and others seem insensitive to not understand your feelings, but later, it may seem no big deal. Some people get a bit paranoid or generally anxious. . Try to remember it’s not you, it’s not real .... it;s the meds. Used post-its, stuck around the house, as reminders of this.
Depression. there are complex physiological and emotional processes involved. Symptoms can include: *a low, heavy, miserable feeling *general loss of pleasure in things that used to be enjoyable – often including sexuality and intimacy. * reduced concentration. * hopeless and bleak thoughts. . Some of these reactions are natural responses to chonic illness. But a lot of it may be chemically induced by the treatment meds you’re taking. Remind yourself what the fight is for – to eradicate the virus and regain your health, natural enthusiasm and quality of life. Please follow and read links on managing depression.
PLEASE SEEK IMMEDIATE HELP IF DEPRESSION REACHES POINT OF THOUGHTS OF SUICIDE OR SELF-HARM . THERE IS A WAY THROUGH. ALSO, SEEK SUPPORT IF OTHER FEELINGS, EG ANGER, OR ANXIETY BEGIN TO BE OVERWHELMING - TALK TO HEALTH CARE PROVIDER & FRIENDS / FAMILY. CONSIDER ALSO THE ROLE OF ANTI-DEPRESSANTS IN MANAGING TREATMENT. SEE LINKS BELOW FOR HELPFUL INFO
General notes on emotional well-being and understanding / treating depression. http://helpguide.org/mental/depression_signs_types_diagnosis_treatment.htm
http://www.helpguide.org/mental/mental_emotional_health.htm

http://www.mind.org.uk/help/medical_and_alternative_care/making_sense_of_antidepressants

http://www.counselling-directory.org.uk/bacpcharity.html

http://www.mind.org.uk/help/medical_and_alternative_care/making_sense_of_counselling

http://www.sane.org.uk/SANEline
(telephone helpline for mental health issues)

The following links access information on emotional and mental health specifically related to Hepatitis C and Hep C treatment.
http://www.hcvadvocate.org/hepatitis/factsheets_pdf/MH%20depression%20overview.pdf
http://www.hepatitis-central.com/mt/archives/2009/01/why_depression.html
http://nchsr.arts.unsw.edu.au/media/File/HepCtreatment.pdf
http://www.hepctrust.org.uk/news/2010/January/Management+of+Depression+During+Hepatitis+C+Treatment+with+Interfero+-based+Therapy
http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Treatment_Side_effect_Guide.pdf
(see section 8 – mental and psychiatric symptoms)

IN A SEPARATE POST, PART TWO OF THIS ARTICLE DESCRIBES SOME PATIENTS PERSONAL EXPERIENCES AND DISCUSSES OUTCOMES OF TREATMENT CHOICES AND COMMITMENT