Doing Good

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Another injection of apathy done. 35 down, 13 to go. Yes, I have done well. I am proud of myself. It has been and is a supreme achievement. Like most of us I have had some battering from life. These can leave you feeling defensive or aggressive depending on your temperament. I`ve been both of course. Why have one fault when you can have a whole bagful.
But despite still feeling crappy from the symptoms there is a new me coming out. More quietly confident and at peace. I like the new me.

Whenever I describe a side effect of treatment I find myself saying
“One of the worst sides is…. But when it comes to apathy it really is true. Being slightly anal and obsessive before treatment and having a thing about order and control in my life the apathy was hard to take. And yet strangely enjoyable and freeing.
Being able to let things just slide and overcoming the tendency to obsess about it has been very releasing.
Right now, for example I have a 6 week backlog of mail piled up. In fact, the gas people phoned last week saying unless I paid my bill I would be cut off. I paid up straightaway.
Money wasn’t the problem. Apathy was.
I sifted through the mail and found the bill and the reminders. I just laughed.
Unless you knew me before you wouldn`t know what a huge change that is.
I am not going back to the old me.
I am also very positive about the outcome of the treatment.
At 24 weeks I felt very negative and thought the results would show treatment to be a dismal failure. I was wrong of course so I don`t listen to the demon doubters anymore.
I try not to be over confident either. I suppose balance is what I am looking for.

The world of sport offers a lot of helpful tips in these areas of being psychically tuned up.
Duncan Goodhew once said that he used to get disappointed when he lost and elated when he won. He found this was disorientating and detrimental to his over all performance. So he learned to “level out the roller coaster” and treat triumph and disaster just the same.
Rudyard Kipling was right. They are two impostors.
One of my favourite characters at Wimbledon is John McEnroe and his commentary. He is so sussed out. The superbrat grew up.

The reduction in Ribavirin was a smart move. I feel a lot different mentally and do not get such massive emotional surges as I did. It has probably meant the difference between being able to tolerate another 4 months of treatment or not.

Here And Now

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A difficult day today. Morose and depressed. Had a couple of personal shocks lately, including bereavement. Family stuff.
But I have discovered that expressing myself on my blog, the forum or even email communication is a great way to just get through. Focusing on someone else is really the best way to forget yourself. Maybe that is why being in love is such a great ecstatic experience. One minute you are the centre of the universe, the next a god or goddess enters your life and nothing is the same again.
I like what G.K. Chesterton (journalist and novelist) wrote,
“When a man knocks at the door of a brothel, he is looking for God.”

I have had to replace my hard drive and been off line for about two weeks. Its interesting to have a break from the same thing and come back and view it with fresh eyes.
The treatment experience is often best viewed looking back. I think its important to write spontaneously and grasp the full flavour of the moment, but for real understanding hindsight has 20/20 vision.
As soon as my week 24 results came in I was surprised to see that I automatically began counting down to the end of treatment instead of counting weeks into treatment. A subtle change and incredibly helpful. To know the biggest part of the journey has been accomplished and there is now only 16 weeks left makes it a bit easier mentally.
Also I have asked for and obtained a reduction in my ribavirin from 1200 to 1000 mg a day. I already feel a benefit in that the mental effects of tx are less. I will talk more on this when my body settles down to the new dose and I can see the true effects.

Although I have done 33 weeks of treatment I am reminded this week that I cannot get complacent. Buzz Trexler, (Ripshin) a journalist and pastor from USA who I have met through the hepc blogging community has just had to cease treatment at 36 weeks. This is due to some illnesses that have been caused by a compromised immune system.
Not only does he have to cope with terminating tx prematurely, but he still has the painful illness left to combat.
Buzz, you always sign off wishing others Grace and Peace. May you know that for yourself through this time.
The chances are very high that Buzz has done enough at 36 weeks to have cleared the virus and to remain clear for good.
Just when you thought you had all the pieces of the jigsaw in place suddenly some of them seem to jump off the board.

Update - And More To Come

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There is a follow up to that last post but the dust still has not settled enough for me to get my head around it. So I shall blog on and come back to it later. I always intended to come back to my blog and have a lot of topics percolating so be prepared for a flurry of posting soon.
I have been encouraged by a few to continue to blog. Carol Bolton recently emailed me:
“We are fed up with seeing bitterness. When you are going to start blogging again?”
So here it is. I am going to concentrate a bit more on my blog than spend time on forums because I feel the blog is a more permanent statement. It is, after all, one person’s entire treatment experience. Very rare. Although not as rare as it was.

Those of you in the hepc community who frequent forums know that I am doing OK. For the rest let me bring you up to date and apologise for not doing sooner.
Waiting for my week 24 results promoted another chaotic crisis of emotions for me. There was so much going on and I became very run down and broke out in 3 separate rashes. A herpes shingle type right on my forehead, broken and cracked sores on my lips and inside of mouth and a magnificent red irritating rash right inside my bum cheeks.
These required Aciclovir cream, Daktarin oral gel and canesten respectively. They cleared up OK but took a lot longer than normal due to the compromised immune system. About 10 days in all.
Very distressing to feel your body breaking down and psychologically extremely difficult when you realise you are doing it to yourself and could stop it if you wished.
Also, a couple of riba rage incidents that distressed me.
More very serious thoughts of giving up had to be wrestled with.
A few of you know how serious it got. A special thanks to you for your support. Invaluable.

But the week 24 results came through and I had a viral load of <600. This means there is less than 600 particles of the virus in one millilitre of blood. As I started with over 500,000 this is quite a feat. It made me think of all those dead particles of virus that had to be cleared from the body. If some mathematician can be bothered to work it out, please let me know how many it is.
It made me realise how my liver is working overtime, all the time. No wonder I feel tired and am content to sit and let everything drift past me.

Treatment, for me, is a surreal experience and does have moments of amazingly enhanced consciousness where I suddenly see things in a new light. These could be delusions of course. I certainly have had a few of them. And paranoia and obsessional thinking. But although all of these are very real at the time, once they pass you look back and wonder what the hell you were so worked up about.
The smallest incident can assume gigantic proportions and seems vital to the continuation of the universe as we know it. Afterwards you wonder what you were bothered about.

As I look around and have the experience of many hundreds of others on treatment and post treatment I can see that my reaction has been extreme and I put myself in the 10 – 15% category who have a really hard time on treatment. I am convinced this is due to the high dose of ribavirin I am on (the legal limit) and my natural sensitivity to stimulating substances. For example I can`t tolerate caffeine very well and two cups of coffee in a day would have me on the ceiling zinging away.
As the main work of ribavirin is done in the first 6 – 8 weeks I am going to enquire whether I can drop the dose from 1,200 to 1,000mg. I think this would give me an easier ride.
This blog has been of immense help to me. One riba induced night of insomnia, at 3am in the morning I was having serious thoughts of giving up. I read my own blog from start to finish. I was only half way through when I was convinced by my own arguments and reasoning that I was doing the right thing. It was a strange experience to be encouraged to continue a tough regime by something you had written months ago.

When you are in the light, in a good place, its there you have to make your life decisions to keep you when you enter the dark place.
There is always some storm or other on its way to test what we really are and what we really believe.

Through this illness I have met people online from all over the world. We have become cyber buddies. Sharron, in Baton Rouge, Louisiana, you are very much in my thoughts and prayers.

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