liliana's world

My experience of HepC treatment

Name:
Location: Bolton, United Kingdom

argentinian born, into shamanic practice and self development. I am a teacher and craft person, but not working at present

Sunday, May 27, 2007

NINE MONTHS ON

Tis a long long time since I last updated this blog, and a lot has gone on. The first 6 months were actually taken by fighting to get over some unpleasant sides from the tx.
I had EEGs, brain scans, scans of all sorts, you name it. I just dozed and hobbled my way through this time, getting lower and lower.
As far as I could see, not only the tx had not worked but it had left me worse than I had been before, a brainless fattie who ate and slept the way through my days, losing at times my contact with reality.
And eat I did, not only did I gain the weight lost through tx but an extra 10 kgs (twenty pounds OUCH).

To the outside world, I pretended to be doing well. It is surprising how people think you must be well because you are fatter! I learned that it was very easy to con people, just let them think what they like. It is safer to see health and happines in a growing body than look into the eyes.
What happened then was that, slowly but surely, my dispair got deeper, and somehow someone started 'ticking' the boxes in the pain overload card inside my head...............

Without previous active thought, but following one more visit to yet another neurologist, I took an overdose that should have killed a horse. Coming back to deal with the mop up operation was certainly not an option. I had finally had enough and was 'checking out' early.
Fifty five years of trying to make sense of dispair, giving love, allways sure that the good would win, so many years of forgiving, all of a sudden were too long........and empty............
Forgiving and moving on was not an option, too much damage done........too many pathways of accepting less than I deserved had tainted my perception.

It took me many weeks to get over the resentment against the poor A&E doctor who 'brought me back. It took 5 days and a lot of work on their part to undo the damage and stop organ failure. Was someone up there looking after me? Well, if they are they have a dark sense of humour. Not only did I have to still with the depression that drove me to it, but I had to face the aftermath of mopping up the damage I inflicted on the ones who love me most.
But I am here, vulnerable, afraid of people, pushing myself to do stuff, but I am here. And I intend to stay. I has not been fabulous, but day by day it has got better, and I am prepared to face the issues that I have to work on if I dont want this to become a pattern.

I was not sure whether it would be wise to share this in my blog, so I posted even less. ISOLATION is the most dangerous thing, but also the easiest.

So I decided to share it, because if there is anything I would have done different, it is to cry and shout, even sometimes, long enough for someone to see past the mask and the 'okays' I muttered.
And also maybe I, myself, in future I will not assume someone is well because of how they look on the outside, and listen, and look into their eyes.

Life is a beautiful gift, and its not ours to 'give away'. Experience keeps on showing me that I SHALL GO WHEN IT IS MY TIME, AND NOT BEFORE.
The people who love me unconditionally are back in my life and slowly getting used to the idea that its ok lo love me without fearing the pain of losing me. But I was lucky, they were hurt enough to have walked away to protect themselves and their little children.
The people who were bad for me I have sent away, they can throw their 'crumbs' at someone else.
And I am stronger than I was, and according to the latest Liver function bloods and scan, my liver is actually working quite fine and holding its own. So now I am deeply grateful to that young doctor and the 4 bags of 'mopping up' serum they pushed into me.




10 Comments:

Blogger Sans said...

So open and honest I applaud you for telling it as it is, can relate to it.
Sans xxx

11:11 pm  
Blogger LaurieBluesGuy said...

Lili,

what an incredible post this is, thank you for sharing this. The forum, and indeed the world in general need to know how each and every one of us reacts differently to this virus.

Brave, Brave post.

Thank you

Laurie

12:42 am  
Blogger pixie said...

Thank you for sharing this Lilli...I will also look more into peoples eyes and not assume they are ok....Cx

6:21 am  
Blogger someone said...

Lili....I have been in that place where you went, I can relate to the saddness and loneliness even in a crowded room, and yes how easy it is to put a smile on your face and make it all look tickety boo.
Why is love so painful
It makes me want weep
Hush my child and close your eyes
The pain will go with sleep
These were words I wrote once, but you and I are survivors Lili we are meant to be here for some purpose. Maybe if it's just to spread the word that it can get better.
As chrissy said on the forum...extra big hugs next time we meet....regards jbxx

7:07 am  
Blogger purpleswallow said...

Oh, Thanks everyone. I am SO GLAD I posted it. It is humbling to be surrounded by so much love.

And JB, such beautiful words, and So true. Pain does fade within sleep.
Love you all
Liliana

10:07 am  
Blogger ron said...

Lili
As other people have already said - thank you for sharing. I admire your courage and tenacity - and honesty.

Wishing you well
Ron

10:36 am  
Blogger Not Blank said...

How brave you are to write this!

2:03 pm  
Blogger Ros said...

Lili

I am writing with tears in my eyes.
I am so pleased that you are still here and fighting every day to be stronger, but also because I know how it feels to hear 'you look well' when inside you are falling apart.

You are as jb said a survivor and I look forward to spwnding more time with you sometime soon. xx

Rosi

3:13 pm  
Blogger Jason Paul Tolmie said...

My goodness Lili...there is no doubt that you belong forever and a day to us on this side of the great wall! Your sadness and darkness in your post shines through to the most brilliant light imaginable...you are stronger than most on this planet and I salute you!

Jaex

8:26 pm  
Blogger Nadine said...

Lili, I'm so sorry for everything you have been through and I'm glad for you that life is getting better.

I have missed seeing you on the forum and I'm sorry I wasn't even aware that your tx didn't work...that sucks pure and simple!

I know others with cirrhosis that didn't have succesful tx either and they are doing well now, Susie the owner of Voices is one of them, maybe you can get some solace in knowing that.

Take care of yourself!
nadine

1:42 am  

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