Chapter 7 – Present-Future
So it’s been a few weeks since I posted anything. My last
post was a difficult one to write, fraught with danger because of its content.
Now that it is too late to withdraw what I said I sit here evaluating what I’ve
done and am trying to work out if it was the wise thing to do.
Prior to this last post I would receive comments on posts
either verbally or online, this last post was different and I’m not sure how to
interpret the change. I did receive a few messages of support which were
fantastic to receive, they were empowering and supportive and most welcome, but
they were few, otherwise there has been silence. I don’t know what I was
expecting but the silence feels a little unnerving. It’s not as if I was
expecting people to come running for a group hug, I wasn’t sharing anything
happy or worthy of celebration but now I’m not sure if this is the quiet before
the storm and I should be looking out for dark clouds on my horizon. Maybe I was stupid in disclosing my status, maybe
those that read the last post decided to stop any involvement with my blog,
maybe they didn’t know what to say, maybe they do know what they want to say
but are being considerate enough towards me not to express it, maybe the
depression and anxiety I am feeling is making me overanalyze the silence,
maybe, maybe, maybe.
So for this post, if only for my own state of mind I want to
record my journey so far. What I have learnt, what I have experienced and what
my future may look like. This may end up being a dry boring post but I think
after my disclosure last post I need to set the record straight as to what has
happened, is happening, and likely to happen to me.
Me, a gay man who is HIV+
I have looked for support wherever I could find it and that
has led me to a group of people (male/female, gay/straight) who are also
dealing with HIV. One shared a story yesterday about a recent hospital
admission for a non-HIV condition but was given an infection wrist band and
asked by a senior nurse “How long have you had AIDS?” It made me realise that
even within clinical areas there is not a complete understanding of what is
HIV/AIDS and the current treatments being used. That scared me a little because
I work in a hospital and I know nursing and clinical staff have read my blog
now I’m not sure if they have per-conceived ideas of how I should be treated.
With that in mind I thought I would share a little of the clinical information
I have learnt in relation to my current situation. I hope that through this I
can help others better deal with, not just me but anyone who is HIV+.
There are two sides
to what I am going through at the moment and I want to record them
individually, it may be surprising to discuss what my biggest obstacles are as
I travel through this nightmare. The first is my medical health, which I’ll
call, HIV 101, then my greatest obstacle my mental health, which can only be
called, The Struggle.
HIV 101
I don’t expect everyone who might read this to have a full
and current understanding of the dynamics surrounding HIV so I want to share
what I have learnt in the simplest way possible. I began this journey with what
I thought was a good understanding of what I was going to be going through but
I have discovered that there was much to learn.
HIV basics.
When the virus first gained access to by body it had a ball.
It multiplied at a huge rate because my immune system did not recognize it and
was not prepared to repel it when it arrived. Soon after my immune system works
out what to do and sends in the troops, particularly the CD4 cells of my immune
system to attack the invader. This actually works and the level of the virus
drops dramatically as my immune system does what it’s supposed to do and attacks
the infection. Unfortunately the nature of HIV is unique, as the CD4 cells move
in to attack HIV does what it does best. It invades the CD4 cells and uses them
to reproduce, in doing so it basically hides from my immune system by using my
own defenses for protection. So what does that mean? Well basically HIV likes
to kill off my CD4 cells which are an important component of my immune system,
as it gains strength my immune system collapses. Without a strong immune system
I become susceptible to infections which would, under normal circumstances be
easily fought off and removed from my body. Something as simple as a flu could
result in the development of PCP (a type of pneumonia) or any number of
relatively non-serious infections these are called opportunistic infections and
it is these that result in a new diagnosis of AIDS, and could land me in
hospital fighting for my life.
I know this sounds dramatic but here are my figures so far.
There are two numbers that tell me what state my health is
in. First is my Viral Load, this is the number which indicates the amount of
virus in my blood system. As I said this figure skyrockets during the early
stages of infection, often into the millions before falling as my immune system
attempts to remove it. The initial blood test I had, the one that changed my
life, had a reading of 4659 which indicated that the infection was already
being controlled by my immune system to some degree and that I had already
passed through the initial onslaught. I thought this was a good sign, it seemed
better than a number in the millions but it indicated that my immune system had
achieved all it could otherwise it would have removed all traces, it was now at
the stage of being overrun. So what do I do? I need to get this viral load down
to undetectable levels. By doing this I will take the pressure off my decimated
immune system and prevent the possibility of further transmission. This is
important because people still seem to be thinking like medieval peasants
avoiding lepers so as not to catch the infection. Once my viral load is down to
zero and is classified as undetectable it is also untransmitable.
The second figure is my CD4 count, basically how much of my
immune system is left. A healthy person would have a reading that will float
between 1300 and 1500, fluctuating depending on if it is fighting off any
little infection. The initial advice I was given by my specialist was that we
would not start treatment until my CD4 level fell below 500. A reading below
200 can result in a reclassification from HIV+ to one of AIDS as my immune
system would be open to attack from any number of opportunistic AIDS defining
illnesses. I thought this delay was ill
advised and was determined to make an argument to begin treatment straight
away. I began to search through available literature, searching through current
studies to build a case to show that early treatment was beneficial and
succeeded in finding enough information to make my case. Returning to the
clinic to get the results of my blood tests I had a folder containing all the
study results and clinical data to make my case for the commencement of
treatment no matter what figure was presented. I never opened my bag as I was
told my initial reading from my first blood test was 260, well below the proposed
cut off for the commencement of treatment and too close to being seriously
compromised. It was at that moment that all the reassurances I had been given
about the ability of treatment to keep me healthy went out the window. I was
not well, I was way too close to being open to attack from anything that came
my way. My arguments to begin treatment early were irrelevant as it became
obvious that we needed to begin straight away if there was to be any chance to
save my immune system and maintain any form of health.
So what now?
I straight away commenced treatment, which means 2 pills a
day for the rest of my life. It is a combination of 3 drugs which all attack
the virus from a different angle, preventing replication and preventing the
connection to my remaining CD4 cells. The list of possible side effects are too
numerous to mention, headaches and muscle pain, insomnia are mild, it’s the
liver and kidney failure or bone degeneration that scare me. Drugs to kill
what’s trying to kill me could kill me does seem like a no win situation. 3
weeks after commencing treatment I had a follow up test which gave at least
some promising results. My viral load had dropped from 4659 to under 40 which
means that we are close to becoming undetectable. This is important for two
reasons, it means that I can’t pass this experience on to someone else and that
we can stop the virus from doing further damage. My CD4 count wasn’t quite as
positive with a small increase from 260 to 320. This may only be a small
fluctuation due to an infection and will always be variable depending on what
is going on at the time, which is why there is such a range for a healthy
person. I need to wait for my next result to see if there is any pattern with
this number.
Have I become
paranoid? Of course, I scour the list of patients on the ward where I work
checking for even the simplest of infections so that I could be cautious in
interacting with anyone who may unintentionally compromise my fragile health
status. A cough or sneeze sets off alarm bells. Since March I have had 6
courses of antibiotics to either tackle an infection or to try and prevent
others. I am today sick with the second flu this winter already. The last took
3 weeks and 2 courses of antibiotics to get under control and now only a couple
of weeks later here we go again. You don’t realise how much work your immune
system does behind the scenes keeping your body free of disease until it can no
longer do its job.
So all the clinical issues are getting under control, I have
a good team behind me, consultants, clinical nurses all making sure my physical
health is heading in the right direction. The other issue I have discovered
through all this is harder and one that I am still struggling with.
My mental health.
The Struggle.
When talking to people in the same situation as me I hear
the same words again and again. Confusion, fear, anger, depression, loss,
isolation and grief. Even when doctors tell me that ‘everything will be fine,’
I can’t reconcile this with the reality I am traveling through. Early on I had
to stop listening to music because the depression was so heavy that even a
happy song made me realise that I would never be happy again. I felt that,
although I was still living and breathing I was a shell already dead, nothing
to look forward to but a life alone, isolated from ‘normal’ healthy society that
didn’t need people like me. I tried taking my mind off of the situation by
going to art galleries in am attempt to distract myself from the constant
negative conversation in my head only to find myself standing in front of art
works with tears running down my face.
I knew what was going on, the depression was real and was a
valid response to what was going on around me. I have sought help through
counselors both outside and within the HIV community, basically if it was
available I have utilized it but I still find myself sitting in a corner and
just crying at the slightest provocation. The memory of the rejection I suffered
at the hands of everyone within my social group has created a situation where I
don’t feel strong enough to handle further rejection if I try to make new
connections. I did get together with one of the guys who I had been seeing for
a couple of years, at his request, but he was only looking for sex and it was
one sided, emotion-less, painful and violent. I was no longer someone to spend
an intimate evening with but just a body that could be used however he saw fit,
without regards to my comfort, needs or to me as a person. I felt used, but I
was so desperate to have some human contact just to know I was still alive I
let it happen. I have not heard from him again, I can only assume it was his
way of dealing with his hornyness at the time and maybe to punish me for
scaring him into being tested.
I had good days and bad days, luckily I am beginning to have
less of the bad days, although they are still there. At one point I resorted to
illicit drugs in an attempt to get some relief from the constant onslaught of
depression but this only made matters worse. Drugs that in a previous life
would have had me jumping for joy and kissing anyone I came across had the
opposite effect, my depression only deepened while on ‘happy pills’ and it now took me days to get out of the funk
they created.
So there you have it, what a miserable fucking life, right?
But I go on leave from work in a week to allow me to find a
new place to live, away from all the negativity that the people around me here are
forcing down my throat. I am going to come back stronger and empowered simply
by changing my current situation. I have already disclosed my status to the
world through this blog, something that people who have been positive for 10, 20
or 30 years wouldn’t think of doing but if I can do something to change the
attitudes of even one person in regards to their understanding of HIV then it
will be worth it, of course I intend to do a lot more.
So I want to end on a happy note, I have been fighting
through the darkest of days, days that I thought would never end, days where I
felt that I would never see the light again. But here I am, I will survive, I
will grow and I will not be putting off anything for ‘later’ because if I have
learnt one thing so far it’s that later may not be an option so live for today
and I intend to.
