Living Without HepC

Excerpts from a dialogue from the Forum on the experience of post-treatment brain fog:

I was wondering if anyone else experienced post-tx brain fog ? I noticed that my cognitive abilities are way below what they used to be before tx, and I had almost none on tx.
When I start thinking of an idea or a project that I must complete soon, my mind just gets blank
and I go and put the TV on instead. It drives me insane……

Everything is very slowed down, thinking, talking, expressing myself, writing. My 80 years old mother has brighter and sharper mind then me currently, and I’m only 45 (!) so I cannot blame it on ‘old age’ …….

I have noticed that more than ever I’m faced with a blank page and don’t know what to write and spend a lot of time looking out of the window with not a thought in my head, sometimes I think I am asleep but awake. I think they call it zombieism…….

Teddy, it sounds to me like you’ve reached a very highly advanced enlightened Zen-like mind state. The monks in the monastery spend years trying to reach that “thoughtless” Emptiness and here you are !

I felt the Zen thing and thought that maybe the brain had been slightly fried, but I have a good theory now, its a sense of calm and relief, its a sense that you can and deserve to just sit and think of nothing, Well, it worked for me. I don’t fight that feeling any more, If I can, I just sit and enjoy the fact that I can…….

From certain perspective it’s all really trivial…yet when feeling dull and half-witted for months and months, with very short breaks in between, patience does run out and some worrying thoughts do set in.

These three people are describing very vividly and accurately what I have been experiencing over the past four months and living with. To their credit, with brain fog and all, they are describing it more succinctly than I think I did on this blog.

It is so reassuring to hear that other people are having similar experiences. Not that I would wish these side-effects on them. It’s just that I thought I alone was experiencing them and I was seriously beginning to think I would end up in this state permanently.

That is why I was so startled ten days ago to discover that I actually felt different than this. Happy. Happy I could think again, remember lists, appointment dates, not walking around in a waking dream. And well.

I’m really pleased to write that I still feel I have my wits back, still feeling happy and well. It’s as though loads of little switches in my mind and body have flipped over to “on” again. I am beginning to feel I can re-connect again and get on with things. I am definitely losing that feeling of being eighty years old – and beginning to feel younger than I did a few months ago.

This whole post-treatment experience is not well recorded or researched, so many people like myself go through this phase not really coping, considerably disconcerted and not realising it’s a common occurence. Perhaps less so for those on the Forum recently as they are sharing and discovering their experience is not unique.

I’m glad to say that The Hepatitis C Trust are planning to carry out some research into this area. I hope we will talk about it when I meet with them. Yes, part of my re-connecting with people has meant I made contact with them and I look forward to a visit there next week.

This entry was posted on Sunday, February 19th, 2006 at 5:09 pm and is filed under Journal. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.