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.
*********************************************************************
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.
*********************************************************************
posted by Paul | 10:43 AM
8 Comments:
Hi Paul,
Well done! About time too. Yes I know I nagged, but it worked!
Carol
I'm so glad to see you back blogging, I've missed you. :)
Thanks Paul, I had envisioned you with heavy dark drapes drawn under piles of blankets and unable to move. Maybe that's a little accurate? That is great that you can look back to see how far you've come, that's encouraging to me also.
Strength in Christ,
Nadine
Hi Paul
Good to see you back and expressing yourself as eloquently as usual! It's always interesting to read your blog - open and honest, saying things that resonate with many people I'm sure. How long left? Can't be too long now. Hope you're doing fine.
Lu
Hi Paul,
Great to see you blogging again! You're such a fighter - inspiring for so many of us dealing with hepc and treatment. Hang in, hang on. All best wishes for the remainder,
Sue
Welcome back! I am in total agreement with Carol - sick of Bitterness!(this of course has many layers!) and am glad to read you are doing well, reflecting "in the light" and look forward to hearing more! Your perspective on this shared journey is unique and valuable and was terribly missed!
ps - hi Sue and Lu!
Thanks for all your comments. Knowing that you are all with me on this trip often keeps me going. There is tremendous power in a shared experience. I value greatly your support.
Hard drive down on my PC, hope to be back very soon.
Paul.
I felt very moved by this:
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.
I am about to embark on hepC tx (Gen 1a 48wks of riba & peg-int) Having been (until 3 yrs ago) a heroin addict for 25 odd yrs, I'm no stranger to misery. It seems crazy to be purposefully making myself ill again, having only had 3 short years of feeling well. I have found your blog very insightful, thankyou.
Wishing you good health & peace.
Matt S-P
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