Saturday, 19 March 2011

Absent On the Sofa. Hepatitis C and "Brain Fog."

The normal neurological pathways are malfunctioning, so please do not expect
sense or comprehension: the treatment I've been on has a mangled brain effect.
I am the hep c patient who wanders how some system and a competent ability
can be possible, in managing any personal admin with no focus or brain agility.
Uncooperatively, the clock and calendar i consult show hours weeks months days,
which blur and fiendishly rearrange themselves, confounded by my mental haze.

I used to be quite capable and a practical type of person who'd make "to do lists."
If I try that now, they read like obscure abstract poetry, but the efficient world insists
that bills are paid, cars are taxed and hospital appointments are regularly attended.
I'm phased by tasks, and just can't draw on personal resources on which I once depended.
Gone is the once reassuring background confidence that I can tackle any basic chore.
If I have to call a help line, "please explain carefully, again, and speak slowly!" I implore.

But the person at the other end speaks just as fast, but louder, like a typical foreigner abroad.
I can't grasp what is explained, or join the dots, my once neat information processing is flawed.
Incidentally, when I earlier mentioned motor vehicle tax, I should add - I certainly ain't driving.
I need my fog and hazard lights on even as a pedestrian! there is not a chance of my surviving
complicated and overloaded activities like gears, indicators, or mirror, signal and maneuvre;
even in my own home, most days, I struggle to use the tv remote control or operate the hoover.

And yes it bothers people when they're telling me something that seems not so very complicated
and I stare blankly, am unable to reply, ask irrelevant questions, and perhaps get strangely agitated.
All this might seem very paradoxical, because, some say I often write with insight and some clarity;
So how is it cannot get my head around the ABCs of basic tasks? There is certainly much disparity
between small remote islands of imagination or and good sequential thought or ability to follow
an apparently simple everyday discussion or procedure. It's because of all the pills I had to swallow.
Those heavy duty medications I've been taking for so long have made me confused and scattered.
Yes, I do still have some brain cells, but not in good working order; scrambled, tired and battered.
And although I write this with good cheer, and a light-hearted tone, not sounding too distressed,
please understand the battle, and that I am painfully aware of how my competence has regressed.
For in this rhyming story, I want to let you know that there is sadness, loss and disconcerting fear,
that in exhaustion and befuddlement, my previous abilities and skills may permanently disappear.
I have to work each day to encourage my own thinking functions, often push past shutting down;
and I need you to be patient, understand this sad happy distracted hopeful moron in a dressing gown.

(eva day)

3 comments:

  1. once again you tell it like it is, and it is heartbreaking what you have to go through, the level of incapacitation, because not only you are a prisoner of incapable body, you are left down by your brain and have to struggle with things that had been obvious and taken for granted :(((((
    eva i can hear your cry for help, i can hear your utter desperation and how tired of it you are, yet there's nothing anyone could do to change that and you are condemned to cruel waiting in hope for improvement...
    you are amazing person, doing your best in time of adversity and i hope that your spirit won't break and will keep shining through and light up the days for those who cherish you and pray for you to get better :))))) xxxx anna

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  2. Thanks a lot for this nice post. Awesome information.....


    Smith Alan
    http://www.raymeds.com

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  3. Eva,
    I have been staggering through hep c resources for years...and your words and experiences resonate with me more than any other stories. I went through the standard treatment available in 2000 which didn't work for me. I am now trying one of the new triple combination treatments including the Peg Interferon, Ribavirin and protease inhibitor, Victrelis. I'm at 7 weeks and this time around is even worse than before. Since I am not "treatment naive"in any sense of the word, I so so understand what a lonely place it is to be going through cognitive decline, and having your body seemingly decompose as you are still trying to go the course and await the day the torture reverses. Finally, it is appallingly clear, that your not seeing even a glimmer of that day. I'm there too. I'm sitting in the waiting room with a crowd of the treatment naive learning about what they should expect. I want to scream out, "the emperor wears no clothes!"

    So thanks for this, you express what has seemed inexpressible to me.

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