THE PRICE OF HOPE

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I just couldn’t wake up today. I tried, but was trapped in a near paralysing foggy exhaustion that made it necessary to take the day off.
Usually I can fight through tiredness with a combination of bloody mindedness and caffeine but this time it wasn’t possible, so I went back to bed for many hours.
I planned as I drifted off to my second sleep to use the day to write a blog on my art, but now I’m actually (finally) operational I thought it would be more beneficial to write about how the Epclusa treatment for my hep c is going.
I’m in my third week of taking a drug that has seen me travel through anxiety, mania, nausea and irritation with a constant of heavy bodily exhaustion.
Some of the emotional swings I initially went through I realised were related to the past horrors I suffered on my previous pegulated-interferon treatment, and were anxiety related. Thus when I started to ‘feel’ side effects of this treatment I panicked and needed remind myself I was taking a drug potentially powerful enough to knock out a virus I’ve had for 30 years, so of course I would notice it in my system.
I’d done research on the drug prior to starting the treatment, and watched various of my peers take this medication, so was relatively informed.
I have noticed that the routine the hospital runs me through is not as intense as it was when I was on the interferon. No regular weigh in’s, blood pressure taking etc.
Today I was looking through online sufferers reactions to the drugs, including those who would love to take it to clear their illness but simply can’t afford it and I realise that this is yet another drug trial where fear of what could manifest means people, ‘the lucky ones’, are willing to pay 1000’s of pounds to use a new wonder drug that has not had its long term effects extensively researched.
The same happened with the peg-interferon. There was a given success rate of clearing the virus that didn’t take into account those that were unable to complete the treatment and those for whom the virus returned after its initial clearance.
Scrolling through comments sections on Epclusa, I don’t see the problematic side effects of the interferon but I do see side effects, I do see cases of the virus returning, and I do see possible post treatment manifestation of other illnesses. However seeing the heart breaking posts of those who cant afford this drug (including of veterans who contracted the Hep C in Vietnam) balances the risk somewhat.
So I’ll continue taking the pills. I’ve seen too many peers die horribly of illnesses related to Hep C, and though I’m relatively healthy (not drinking for 21 years has been a huge benefit of course) I’ve had times of liver related sickness that were horrendous and I’m aware that as I get older, these may well increase.
That’s today’s blog done.
Perhaps later I’ll write about my art but at this point it seemed more compelling to exorcise my fears and thoughts!

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About charlottejane2002

Author of 'P is for Prostitution', 'The Bloody Sacrifice' and co-editor of 'A Contemporary Western Book of the Dead' which are all published by Mandrake of Oxford. Italian publisher Roberto Migliussi has recently released 'The Sky is a Gateway, Not a Ceiling', a book of Charlotte's collected essays printed alongside images of his own art work. Charlotte is also an artist who creates spiritually directed art works from road kill and found objects. She has had her written work printed in anthologies and various magazines and on line publications and has given presentations at many events and institutions including Edinburgh University and Brooklyn's 'Museum of Morbid Anatomy'. Her art work has been exhibited widely including at London's Chelsea Gallery and The Bath Royal Literary and Scientific Institute, and is soon to be shown in New York.
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