Ever since I was little (i.e. three centimetres littler than
I am now) I have harboured a secret desire to be an actress. Having a job that
involves kissing good looking men, wearing exotic clothes and earning a
kerjilion pounds for pretending to be a nun / socialite / Virginia Wolfe for a
few months seems like a pretty sweet deal to me. Unfortunately I am a touch too
short and a shade too ugly to grace the silver screen, but this has just made
it all the more exciting that in the last few months, my dream has come true.
I am currently starring in my own one-woman show, entitled,
“Home Dialysis is Amazing and the Answer to All My Problems”. If you missed my
star (yet brief) turn as Dulcie in Cranbrook Grammar School’s 2003 production
of “The Boyfriend” you might not be aware of my acting prowess, but my
performance in “Dialysis….” has surely provided ample evidence that I am
an excellent actress, on a par with all the greats: Streep, Mirren, Dench,
Lohan. Not to blow my own horn, but I believe I have succeeded in convincing all around me that starting home dialysis (HD) will be the greatest thing to happen
to me since I had my train tracks removed. I have even managed to convince myself.
Behind the scenes, a slightly different narrative has been
playing out. Embarking on my home dialysis journey has been overwhelming. I had
undertaken a fair amount of my own care before I started my official training,
so I arrived in the training unit as the cocky ingénue, confident that I would be in and
out within weeks having perfected the fine art of dialysis so expertly they would have to
change the name to Rosyalysis. But this was not quite how it panned out. There has been so much to learn, far more than I had envisaged: a different machine to
line and prep, and to strip down and clean at the end of treatment; a new set
of needles to use (the new needles are oxymoronically blunt) which require a new technique for their insertion in addition to new spots on my arm
into which to thrust them. I have been re-started on iron infusions after a
year and a half, so I have had to learn how to administer those, and have started
taking my own blood sample for the monthly checks. I am also undergoing regular
quizzes, kidney failures own version of your driving theory test, on how the
machine works and what to do if things go wrong. The likelihood is that if
something goes wrong with the machine it will happen whilst I am attached to it
and a large percentage of my blood will be spinning around the tubing; the
hospital want to be happy that I am able to rectify the problem one-handed
instead of melting down and inadvertently killing myself. The nurses are
incredibly lovely and very supportive, but I am so desperate to get home that I
am putting a fair amount of pressure on myself – you should hear what I call
myself when I make a mistake. I can be brutal.
The gap between the idea of HD and it's reality is the
distance from my sofa to Mexico. As much as I hate going to the hospital, I had underestimated the
benefit of having a nurse ten feet away to help with the inevitable, "hilarious", dialysis
mishaps. In just over a month’s time, it will just be me and the machine, the
needles and my icky, toxin-filled blood - if things fuck up it will potentially
be quite dangerous, and definitely all my own fault. I have never faced
anything as daunting in my whole life. I feel like such a pussy.
The other issue has been admitting, finally, that I am a
dialysis patient. This might not be as much of a surprise to you as it has
been to me, but it has come as a massive shock. Going to the unit; relying on the nurses; leaving dialysis at the hospital door: by dialysing in
this way I have been able to keep Hospital Rosy and Real Life Rosy separate and
live in cosseting denial. Now I only need to walk into my bedroom to
know for certain that I am on dialysis: the builders came, and I am now the proud
owner of a carbon stack, whatever the hell that is, a sink, a fluoro light and
a 5 x 5 wooden platform on which the machine will sit. My spare room has also
undergone a makeover, dialysis-style: there is a small mountain of boxes
housing everything from saline to needles in addition to 2 extraordinarily
heavy bags of salt that I can neither move nor figure out what to do with
(something else to learn). I have been told repeatedly that HD will soon become
second nature...but therein lies the rub. I don’t actually want to plunge needles into my arm and hook myself up to a machine and call it my second anything. There are
plenty of things I enjoy doing in my bedroom, and none of them are dialysis. But sucks to me, I guess, and I need to shut up and put up because this is who I am and it could be a whole lot worse.
Moan over. Instead of bitching about it I need to
focus on all the benefits HD will surely bring into my life. I won’t be
starting nocturnal treatment for at least three months, but even though I will
continue on with my current regime plus
two extra sessions on the weekend, it will free up my time and my energy and at
least take the edge off the ghastly fluid and diet restrictions. Whilst
everything is still unfamiliar and likely to leak blood onto my bedsheets, it
is inevitable that there will be times at which this whole thing feels like yet
another of my knee-jerk and ultimately stupid decisions. I am shit-scared and
relying on the fact that things usually just kind of…work out…somehow…to
reassure myself that I will be able to do it when the time comes. The show,
after all, must go on.
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| A delivery for a month... |
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| ...and some more |
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