From: "Michael Nieuwenhuizen" 
Newsgroups: uk.gay-lesbian-bi,soc.motss
Subject: Just another day...
Date: Mon, 1 Dec 1997 13:21:10 +0100

Today - the 1st of December - it's World AIDS Day.
A day to remember those who've died of AIDS, to
collect money for AIDS research, to raise AIDS
awareness.  But also a day to look forward to new
medication, new therapies, new hope.  Because
those new drugs work, right?

Yes they do.  But that doesn't mean people are
being cured.  Not at all.  Let me try to tell you
how a person with HIV (PWH?  according to
American standards I've been a person with AIDS -
PWA - for years) lives through the day.  Not that
I can predict how the rest of the day will go,
because every day has new surprises, physical
and medical surprises that is..

I woke up this morning at 7:30 because my feet
were so painful.  Caused by neuropathy, a side
effect of one of the drugs I've been taking for 6
months.  Painkillers don't do much for this kind of
pain.

At 8:00 I take my first dose of pills, 9 in total, and
of 3 different kinds.  These have to be taken on an
empty stomach, so I can not eat between 6 and 9
AM.  Because of the empty stomach, this dose
makes me so nauseaus, that I can not do anything
for the following hour but sit or ly down, which I do.
Usually I manage to fall asleep again, but not today.

At nine I'm allowed to eat something, but I've seem
to have lost most of my appetite (another side-effect),
so I only eat liquid food.  After that I fall asleep
again.

At 11 the alarm rings, for my second dose of pills.
This is the worst dose to take: 4 big round pills,
that have to be chewed and then swallowed. There
have been times that I had to take this dose twice,
because the first dose came out within seconds.
These pills also have to be taken on an empty
stomach.  After taking them more sleep - I need
12 hours of sleep these days.

At about a quarter to 1 I wake up with a stomach
ache: diarrhhoea.  Usually I have this in the evenings,
but for a change it comes in the early afternoon...

It's 1:00 PM now, and I might go to work later.
Only for a few hours: I officially work on a 50%
base (I'm disabled for 50%), but I hardly ever
even make that 50%.  If I'm lucky though, I might
have the strength to go to the gym today.

At 4 o'clock there's more pills, again on an empty
stomach.  And then dinner at 6.  I don't cook
much these days - no appetite and no energy to
cook.  So it's probably gonna be something from
the microwave.

At about 7 I'll probably get cold again.  I turn up
the heat to 25 degrees Celcius, but that's often
not enough, so I'll get my duvet, and watch some
TV.  Only to get up now and then to go to the toilet,
because I seem to have diarrhoea every evening.

At 8 more pills, but these are the only ones that
can be taken on a filled stomach.

At 10 pm I really want to go to bed, I'm tired, but
I'll have to stay up till midnight, for my last dose
of pills....  And usually I take a sleeping pill as
well, cos sleeping seems impossible these days
as well....  At about 1am I might fall asleep, and
get some rest for yet another day...

Anyway... Is it all that bad?  According to the
doctor's figures I'm the wonder boy of my drug
trial, with increasing T-cells (*), from 30 to 230
in 6 months, and with the fastest viral load (*)
drop ever seen: from 200,000 virus particles
per ml^3 to less than 1000 in one week (which
was undetectable for the standard test) and to
less than 50 in 4 weeks.

So if the numbers are good, why ain't I feeling any
better?

[More info on my homepage at:
http://www.michaeln.demon.nl ]

Michael, sick and tired of the zillions of side-effects


(*) T-cells say something about the resistance of a
person: higher T-cells means higher resistance.
Viral load is the amount of virus in the blood.  The
lower the better, of course.

--
e-mail: michael@michaeln.demon.nl