"GET TESTED; WHO AND WHY!" I WROTE THIS PIECE SHORTLY AFTER JOINING A HEP C SUPPORT FORUM* AND LEARNING MORE ABOUT THE DISEASE. (PRE- DIAGNOSIS, I KNEW NOTHING ABOUT IT) I HAVE LEFT IT AS ORIGINALLY WRITTEN, AND JUST ADD THE NOTE THAT I AM NOT INTENDING TO PORTRAY HEP C AS A LIFESTYLE DISEASE. SEE LINK AT BOTTOM OF POST FOR ACCESS TO FURTHER INFO ON HOW HEP C MAY BE CONTRACTED, AND ON GETTING TESTED..
all you wild child, gypsy nomads, party poppers & risk takers (back then in the past or still living it out now, on the edge from time to time or too much but you just can't help yourself) when we were innocent (and younger) we thought we could get away with it all . ........ further down the line we sometimes discover there may be a price to be paid for all that reckless abandon and experimentation! that's life, kiddo. I do NOT agree with people I've read elsewhere saying stuff about "well, it's karma." that's almost like: serves you right for not being a good girl / good boy. some of us broke out and messed around - and got the riches and the journey as well as the possible dangers of that, is all I'm saying..........so if you ever:
*jacked up a few times and ran out of clean spikes and thought just this once, splash it in boiling water, it's only my buddy, we'll be fine (in other words, you shared a needle: once, just once, is all it could take. )
*backpacked off to some exotic destination and got yourself a tattoo from someone who set up a little shack on the beach somewhere, whittled their own bamboo ..... well, you were off your face, and it was a personal slogan written in thai . hindu/ make it up script, whatever ...... maybe it wasn't totally sterile?........
*similarly, you were drunk, everyone was wasted, your mate did a DIY tattoo when you were all hanging out in some club / pub/ squat/ you were so gone you never felt a thing. it did get a bit scabby.. no one meant any harm, it was kinda funny ..... but .... maybe it wasnt sterile etc etc back then we didn't know that the Hep C virus was catching a ride from one mate to another ......
*someone practiced acupuncture on you and they tried but maybe ...... it wasn't sterile? you get the picture ......
* and for those of you who didn't even get to have the fun of all the wild times: you have ever had extensive surgery / dentistry / a blood transfusion especially pre 1991 and sorry - we didn't know; some health workers were unkowing carriers - some blood batches were infected.
* whoops factor 1. you might have accidentally used someone's toothbrush (it happens) who maybe was a carrier. and they / you had bleeding gums and: well, you heard news of them recently - sure, they're fine. but they could be a carrier or not manifesting yet.
*whoops factor number 2. remember that time you cut yourself, your mate had a cut too, you guys were rock climbing or whatever - he helped patch you up ...... wonder if there was any blood to blood contact? remember, this is a blood bourne virus.
none of this is to make you paranoid. just that early diagnosis is of course best. and it's realistic; this is a fast growing world wide epidemic. (google up AM I NUMBER 12?) so don't be anxious, just get tested. and if you know someone who you think may have been at risk - are you able to gently suggest this to them? most especially if you know someone who always seems to be sick and tired - struggling with unexplained symptoms.
much love; carrying on doing your thing and if you're a natural risk taker (some of us are, and I get it) ok, that's your nature; just take a safety / reality check now and then. no blame and don't oversimplify the very subtle concept of karma. karma is just ... your path
much love Eva
written by eva day: Nov 2009.
for further info, access http://www.hepctrust.org.uk/
Tuesday, 30 March 2010
Monday, 29 March 2010
Note For friends / family / colleagues of a patient on treatment for Hep C.
SHORT NOTE FOR FRIENDS/ FAMILY / COLLEAGUES OF A HEP C PATIENT
This person is on treatment to fight to eliminate the Hepatitis C Virus with which they have been infected. They have a certain percentage of chance for success and have to maximise this by following very particular treatment procedures. They understand the basic facts of this disease and are not putting you at risk of contracting it in any way: please be assured of that. As time goes on, they will learn more about the disease and how to manage treatment; it requires a big commitment over a long period of time. Hepatitis C can be a very serious disease, so they have taken a very positive step in committing to treatment. They may often look and seem fine..... and be wanting to be as cheerful, active and positive as possible. But the virus is a tough one and so treatment is quite radical. Treatment can cause be a lot of side effects. Various changes in bloods, and chemicals they take, will cause fatigue. They are often: sore, very weak and tired, generally uncomfortable, maybe having to suffer sleep or mood disturbances. For some, not all, there can be depression and loss of normal concentration levels. Your friend will tell you if that is the case if they feel they need to. They may also have various strange, uncomfortable sensations, painful joints and muscles, itching, headaches, nauseau, heightened sensitivites to a lot of activity, noise, even foods, taste and smells. ALL THIS IS DUE TO THE VIRUS A& THE MEDS THEY ARE TAKING . For you to read this and understand a bit of what they are experiencing will certainly help them so thank you.
by eva day
p.s. click on this link to access very good Hep C forum - good information and support for patients and their family and friends http://hepcnomads.co.uk/phpBB3/index.php
I HAVE WRITTEN - AND WILL PUBLISH - SOME ARTICLES WHICH I AM HAPPY TO SHARE FOR GENERAL USE - THESE CAN BE PRINTED, PASSED ON ETC; WHERE THIS IS FINE, I MAKE A CLEAR NOTE OF THAT. I DO ASK THAT YOU LEAVE MY NAME AS AUTHOR. THIS IS MY ANCHOR OF MAKING SOME CONTRIBUTION IN THE WORLD, WHILE I AM AT HOME AND SICK. (ALSO AS THE DAUGHTER OF TWO JOURNALISTS, IT IS INGRAINED IN ME THAT ACKNOWLEDGEMENT OF AUTHORSHIP IS RESPECTED AND PLAGARIASM IS TO BE AVOIDED) THANK YOU. EVA. XX
THIS IS WRITTEN AS A SHORT "FLASH CARD" STYLE CRIB SHEET TO SHOW TO COLLEAGUES, FRIENDS, FAMILY, TUTORS, BOSSES ETC., TO HELP EXPLAIN HEP C TREATMENT. PLEASE PRINT AND USE IT IF IT'S HELPFUL.
THIS IS WRITTEN AS A SHORT "FLASH CARD" STYLE CRIB SHEET TO SHOW TO COLLEAGUES, FRIENDS, FAMILY, TUTORS, BOSSES ETC., TO HELP EXPLAIN HEP C TREATMENT. PLEASE PRINT AND USE IT IF IT'S HELPFUL.
SHORT NOTE FOR FRIENDS/ FAMILY / COLLEAGUES OF A HEP C PATIENT
This person is on treatment to fight to eliminate the Hepatitis C Virus with which they have been infected. They have a certain percentage of chance for success and have to maximise this by following very particular treatment procedures. They understand the basic facts of this disease and are not putting you at risk of contracting it in any way: please be assured of that. As time goes on, they will learn more about the disease and how to manage treatment; it requires a big commitment over a long period of time. Hepatitis C can be a very serious disease, so they have taken a very positive step in committing to treatment. They may often look and seem fine..... and be wanting to be as cheerful, active and positive as possible. But the virus is a tough one and so treatment is quite radical. Treatment can cause be a lot of side effects. Various changes in bloods, and chemicals they take, will cause fatigue. They are often: sore, very weak and tired, generally uncomfortable, maybe having to suffer sleep or mood disturbances. For some, not all, there can be depression and loss of normal concentration levels. Your friend will tell you if that is the case if they feel they need to. They may also have various strange, uncomfortable sensations, painful joints and muscles, itching, headaches, nauseau, heightened sensitivites to a lot of activity, noise, even foods, taste and smells. ALL THIS IS DUE TO THE VIRUS A& THE MEDS THEY ARE TAKING . For you to read this and understand a bit of what they are experiencing will certainly help them so thank you.
by eva day
p.s. click on this link to access very good Hep C forum - good information and support for patients and their family and friends http://hepcnomads.co.uk/phpBB3/index.php
Friday, 26 March 2010
THE THREE C'S AND "WHAT KATY DID."
the KatyI 'm talking about was the lively girl, tomboy heroine from a favourite childhood book of mine. sorry blokey blokes - you probably didn't read it, but those of us who were girl children might remember? Katy was feisty and fun, full of energy, often awkward and in a pickle and with a quick temper but warm heart. numerous siblings, aunties .... and then a cousin who arrived at the family home, sick, saintly and dying. or gently declining? I believe she was called Cousin Helen: and I refuse to check my references (or to be corrected) as this is how I am happy to remember it.
Cousing Helen had some mysterious ailment from which she was gradually fading away; she lay on a day couch. in a lovely room next to an open window, fresh flowers by her bed each day, smiling sweetly, welcoming in the various boisterous children, dispensing kindness, words of guidance, kissing the hurts better, patching up disagreements .... and never once complained of pain, discomfort, loss. This was my childhood myth of illness, and I knew that if ever I had to face it my life, this is who I would be; pale and interesting, angelically embroidering samplers with little home truths on them, to give as gifts, reading the classics, and gathering loved ones around me, singing and playing piano until everyone quietly tiptoed on as I gently drifted off to sleep. Probably after an occassional dose of some lollipop-flavoured laudinum and a dash of brandy, dispensed by a kindly old doctor who delivered me at birth.
What a load of old bollocks. I was convinced that something magical happened once you were ill .... there was pain, yes, but somehow angels surrounded you in a bubble of oblivion, so that pain became remote, you floated gently, poignantly in a mist of tranquil detachment from the world of ordinary trivia, and a sort of wisdom and peacefulness descended on you.
I recently looked up books about illness, for children, to help them understand a parents experience through chronic illness. Haven't looked at much of the content yet but sure hope it's a little more real than the images I grew up with. If not I shall write one: and call it "The year My Mum was Crumpled, Collapsed and Crabby." ( a child's eye view of Hepatitis C)
I believe there was also a sequel to Katy's story: she fell of a swing and damaged her legs and spine and became, herself, confined to the couch for a year. At first she was cross and crotchety...... but with Cousin Helens inspiration, also transformed into the angel on the sick bed.
As for me .... with various health problems running up to the Hep C diagnoses, I have now been largely inactive and unwell for three years, and pretty much housebound for two. Crumpled, Collapsed and Crabby pretty much describes at least several moments during the average day. I do have moments of ... well, lets not go so far as to say sweetness and light, but of being reasonably pleasant and not unbearable. They may not last ......
Probably lucky for the majority of people in my life that I am living at some distance from previous social circles. They don't have to put up with me. My husband does ... and chooses to. And still enjoys my company and remains calm, level, understanding.
Obviously, in this household, it is the carer and not the patient, who has the saintly disposition.
(thank you darling!) I have often read, from post-treatment heppers, that the disease and experience has made them a better person. I will put my faith in that experience, since that is how they tell it .......
but would like to ask, at what point does this transformation of self-improvement and growth become manifest? I am three months into treatment and no sign of it yet!!
Will certainly let you know, when it shows up, and am willing to share a little of it, too!
meanwhile, I remain collapsed, crumpled and crabby - and I am sure my daughter would agree.
xxx eva
the KatyI 'm talking about was the lively girl, tomboy heroine from a favourite childhood book of mine. sorry blokey blokes - you probably didn't read it, but those of us who were girl children might remember? Katy was feisty and fun, full of energy, often awkward and in a pickle and with a quick temper but warm heart. numerous siblings, aunties .... and then a cousin who arrived at the family home, sick, saintly and dying. or gently declining? I believe she was called Cousin Helen: and I refuse to check my references (or to be corrected) as this is how I am happy to remember it.
Cousing Helen had some mysterious ailment from which she was gradually fading away; she lay on a day couch. in a lovely room next to an open window, fresh flowers by her bed each day, smiling sweetly, welcoming in the various boisterous children, dispensing kindness, words of guidance, kissing the hurts better, patching up disagreements .... and never once complained of pain, discomfort, loss. This was my childhood myth of illness, and I knew that if ever I had to face it my life, this is who I would be; pale and interesting, angelically embroidering samplers with little home truths on them, to give as gifts, reading the classics, and gathering loved ones around me, singing and playing piano until everyone quietly tiptoed on as I gently drifted off to sleep. Probably after an occassional dose of some lollipop-flavoured laudinum and a dash of brandy, dispensed by a kindly old doctor who delivered me at birth.
What a load of old bollocks. I was convinced that something magical happened once you were ill .... there was pain, yes, but somehow angels surrounded you in a bubble of oblivion, so that pain became remote, you floated gently, poignantly in a mist of tranquil detachment from the world of ordinary trivia, and a sort of wisdom and peacefulness descended on you.
I recently looked up books about illness, for children, to help them understand a parents experience through chronic illness. Haven't looked at much of the content yet but sure hope it's a little more real than the images I grew up with. If not I shall write one: and call it "The year My Mum was Crumpled, Collapsed and Crabby." ( a child's eye view of Hepatitis C)
I believe there was also a sequel to Katy's story: she fell of a swing and damaged her legs and spine and became, herself, confined to the couch for a year. At first she was cross and crotchety...... but with Cousin Helens inspiration, also transformed into the angel on the sick bed.
As for me .... with various health problems running up to the Hep C diagnoses, I have now been largely inactive and unwell for three years, and pretty much housebound for two. Crumpled, Collapsed and Crabby pretty much describes at least several moments during the average day. I do have moments of ... well, lets not go so far as to say sweetness and light, but of being reasonably pleasant and not unbearable. They may not last ......
Probably lucky for the majority of people in my life that I am living at some distance from previous social circles. They don't have to put up with me. My husband does ... and chooses to. And still enjoys my company and remains calm, level, understanding.
Obviously, in this household, it is the carer and not the patient, who has the saintly disposition.
(thank you darling!) I have often read, from post-treatment heppers, that the disease and experience has made them a better person. I will put my faith in that experience, since that is how they tell it .......
but would like to ask, at what point does this transformation of self-improvement and growth become manifest? I am three months into treatment and no sign of it yet!!
Will certainly let you know, when it shows up, and am willing to share a little of it, too!
meanwhile, I remain collapsed, crumpled and crabby - and I am sure my daughter would agree.
xxx eva
my name is eva and these are some of my words
@home at home, not well. but reaching out to the world.
I have Hepatitis C (tough) and am on treatment (also tough going).
Hep C does not define who I am; but it has defined a big part of my reality at this time
it's sure to feature quite regularly in this blog
but so will other things
randomly.
I hope someone somewhere along the way will gain
something from what I write. and I hope that
I will, too.
I welcome comments, dialogue, discussion and interaction.
ps. if you have Hep C, or know someone who does, this is the link for a very good support forum: lots of good info, and warm community http://hepcnomads.co.uk/phpBB3/index.php
@home at home, not well. but reaching out to the world.
I have Hepatitis C (tough) and am on treatment (also tough going).
Hep C does not define who I am; but it has defined a big part of my reality at this time
it's sure to feature quite regularly in this blog
but so will other things
randomly.
I hope someone somewhere along the way will gain
something from what I write. and I hope that
I will, too.
I welcome comments, dialogue, discussion and interaction.
ps. if you have Hep C, or know someone who does, this is the link for a very good support forum: lots of good info, and warm community http://hepcnomads.co.uk/phpBB3/index.php
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