People often ask what is the worst part of my disability and
I would definitely say that it is the powerless feeling that I sometimes get. I
don’t mean in a literal sense (although the
lack of energy resulting in me being tired 24/7 is not great) but more the
metaphorical way that, at times, I’m not really in control of the Friedreich’s
Ataxia and it seems to take over my life. My yearly check-up at the hospital on
Friday reminded me that I am a mere onlooker as this condition is allowed to
destroy my beautifully toned body.
Since my diagnosis back in 2003, I’ve been told all the
problems that could arise in later life as I gradually deteriorate. So far,
that’s been fine. The transition from walking to permanently using a wheelchair
was slow and therefore gave me time to get my head around the idea. However,
potential sight and hearing issues are becoming all too real now. The thought
of me needing glasses and a hearing aid was something I envisaged in years to
come, not at the grand old age of 19. What’s hitting me the most at the moment
is the ferocious speed Ataxia is attacking me, leaving me with no time to
reflect on the changes.
Another part of my condition that doctors have always kept
an eye on is the heart. It too is a muscle, a very important one that’s always
caused me great concern because it is an organ that must work to keep you alive.
Luckily, the situation remained stable and everything was fine until this time
last year. You may remember that I went into AF (abnormal heart rhythm) and was
hospitalised for a week. I have since been on medication and as far as I’m
aware, haven’t had any repeat episodes. That was until Friday.
The doctor checked my pulse and told me that I was in AF
again but told me not to panic. It could happen all the time without me knowing
so it was probably nothing for me to worry about. However, I should check with
a Cardiologist who will have expert knowledge. Fortunately, I have an appointment
at the Heart Hospital a week tomorrow so can have an ECG then. It again proves
that the potential problem surrounding my heart that I have been warned about
for years could finally be becoming a reality.
My point is that everything can change in an instant because
of FA and it is beyond my power to do anything, which is immensely frustrating
and quite scary.
Bye for now!
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