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I have
been asked to write about my experience of living with HIV & AIDS.
As I begin
to write, I wonder, "where shall I start?", "how far do
I go back?"; "what should I include?".. and what should
I leave out?
If I was talking face-to-face; I'd have no problem starting to relate
my experiences. Stopping me could well be a problem! I'd most likely go
on and on until I either lost my voice or you'd fallen asleep, no doubt
from boredom.
But writing it down on paper doesn't seem so easy, so I'll just go with
the flow of my thoughts, and hope it makes sense to you.
I was diagnosed
HIV positive almost 6 1/2 years ago, I'd not felt well for some time -
chronic tiredness, no appetite, hacking dry cough and night sweats, summed
up, my days and nights and all I wanted to do was sleep all the time.
I saw my doctor, who arranged for me to have some routine blood tests,
I was asked to return for the results in around 10 days.
Around 4 days later I got a call from the surgery for me to see my doctor
that day. I was already starting to wonder and worry about what was going
wrong and if it was serious, and yes AIDS did figure a lot in my thoughts.
I say AIDS because the term HIV positive never came to mind just the dreaded
AIDS and I knew you could die from that.
My doctor told me my blood test results were "way off the scale",
but she couldn't say what was wrong with me. I do remember she said, "I
wish I could tell you it's nothing to worry about, but I can't."
A couple of hours later I was in Ward 70 Infectious Diseases Unit) at
the City General Hospital. I had loads of tests done and it was discovered
I had P.C.P. Pneumonia and later they confirmed my worst fears, yes I
had HIV, in fact it was now full-blown AIDS.
Although I thought I might have the virus, having it confirmed was quite
another thing. It was like being in a nightmare except I was awake and
it was really happening.
It was
while I was in ward 70 I first met Jenny Read, an HIV Counsellor. She
was, and still is, very supportive. She has been through the highs and
lows and seen me at my worst on a few occasions!
I have been very fortunate to have had such great people around me for
one; my best friend Kevin who has "been there" for me from day
one and helps me in all sorts of ways. Then there are all the people,
service users, volunteers and staff I've met through Staffordshire Buddies.
More about them later.
I was in hospital for six weeks and lost count of the number of tablets
I took daily. As you may imagine my immune system was very seriously damaged.
This led to other health problems and illnesses.
These included briefly uvitis - inflammation in the eyes, I had quite
a few episodes of this and the doctors think because of it I developed
cataracts in first one eye and then the other.
When they became worse and my vision was very cloudy (I couldn't recognise
people's faces if they were more than a couple of feet away). I had the
first cataract removed.
I chose to have a local injection because I would then be able to go home
the same day. However, there was a problem during the operation, they
couldn't get the replacement lens to fit, so they cut away part of the
coloured part of my eye so the lens would go in and stitched around it.
This meant that no matter how bright the light gets my pupil stays wide
open and so lets all the light through and that can be very painful.
In time the other cataract was removed and that operation went well so
I could go home the same day. Because of the problems in the first operation,
I had to stay in overnight anyway.
However, my eye sight is very much improved and it is great to see people
clearly again, and be able to read and watch TV.
Other health problems some related to HIV/AIDS include another bout of
P.C.P. Pneumonia, which came about after having flu. I now have yearly
flu jabs and I've had a one-off pneumonia jab.
I've also had skin problems which were treated with acid applied to the
skin. Phlebitis twice in one leg and skin infection and Phlebitis in the
other leg, which is because of immobility resulted in D.V.T. (blood clot)
forming in that leg. I had to go daily to hospital for heparin injections
to help dissolve the clot and thin my blood. To save me going to hospital
they showed me how to inject myself so I could do it at home.
I then,
perhaps because I spent so much time at home, I started to experience
panic attacks when I went out and on a few occasions while at home. Well
that's enough of the down side of life, I'll move on to more "positive"
things.
I was introduced to Staffordshire Buddies and was made to feel very welcome.
I visited the Drop-in regularly and met some really nice and friendly
people. I also began helping out at the centre during Drop-in and then
doing basic admin work. As well learning new skills and having a good
time at the same time, it has boosted my confidence no end.
It's great to feel needed and wanted and feel I'm doing something useful.
I just wanted to put something back after all the help I'd received and
the more I try to put something back the more I get out of it. I really
believe it's good for my health.
Although I've had my problems from time to time with illness and setbacks,
I realised other service users have had just as bad a time as I have,
and some even worse. But they never give up and I admire them for that
and it gives me hope.
As for the future, well, I take it a day at a time and it really helps
me to know I have such a loving network of support.
Dennis
Vasey
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