Z S H and ehhhh C?
I had successfully remembered the sequence on the Snellen
chart to get away with not really seeing a bloody thing….
Well, maybe I should have , but obviously I didn’t… that
would have defeating the purpose of sitting at home without vision for a more
then 10day period… it was tempting
though, as it can make you feel soooo small not being able to read out what’s
right in front of you.
If you already struggle with reading when testing both eyes
as a pair, just testing them
individually one by one, to sort of establish the digression in the eye since
last time…. (my right eye is very close to being officially classed as blind) can be soo disheartening and discouraging….
(I’ve also started to notice a pattern, where whoever will
be doing the testing, will never say if you had it right or wrong… just “Well
done” or “Thanks” to whatever you say.. I
could be making up letters that don’t exists, and id still get a “well done” I think
… any thoughts of other on that be very very welcome J
)
But lets get back to the story at hand…. As described in one
of the previous post I had been home for a short period to not wear my contacts
to give my eyes rest to do a proper follow up test a year after diagnosis.
I had been able to get my files mailed over from the UK, for
the doctors here to compare the results to.. .but to get the latest situation
on paper it involved a full day of test, which I wish I had written down so I can
sort of explain what happened.. .in any case, it involved a bout 4/5 computerised
tests and the regular tests you might expect from an eye exam…
I had an appointment first thing in the morning on a Monday morning
and a friend had taken pitty on me and figured it be better I wasn’t trying to
get there on my own whilst being in my blurry bubble … so there we were sitting in the fully brightly lit
waiting room, wondering why, if this was an eye hospital with supposedly a lot
of visitors in much worse conditions then me , they didn’t have a speaking elevator announcing
the floors of where you arrived at…
Apart from that, no issues.. we sat and waited, and after a
while I recall seeing the Doc that
looked after me on my last visit, but then again, I saw not much, so the fact
he sort of waived gave it away I guess….
Eventually the tests started, and I was introduced to another
specialist who took me through to most of the tests, which involved a lot of
bright light shining into my eyes and face, reading out those pesky letters, little
blows of air into my eyes, more lights, some weird looking glasses on my head,
some more lights , the measuring of the movement of my eyes… as we discovered I
had another fun thing… not just having trouble with my cornea, but It seemed I had
trouble keeping my eyes still , something that made the testing slightly more difficult
on occasions, but also probably one of the reasons why initially I got misdiagnosed all those months back…
It emerged I had something called cyclotension nystagmus..(try that with scrabble)
nothing major, as said it involves the control of movement of the eye… but something
that can be handled much easier when you’re a kid then when you’re in your late
thirties..
In any case, its something that’s part of my issues, it doesn't make it worse or less worse, its there and there’s not much else that can be
done.
It was a full on couple of hours and I noticed my friend was
slightly intrigued, worried and slightly shocked to what was going on, as she
was quite aware of my issues, but being there and seeing the tests happening and
realising how bad my eyes really are, made it in her own words a bit of an eye
opener.. .(Pun intended??)
This came more apparent when the lady that been doing all
the testing talked me through some of the options that are available to manage
my condition better… currently I’m using RGP lenses, and am planning on using
them for quite another while although it sort of means getting a new set every
9 to 12 months as my eye will get worse over that period, at the other side of
the spectrum there is Corneal Transplants, which I hope to be far away from,
but never say never…
What she did however was
re-educated me on the Crosslinking and Keraring option, two fairly new
and not everywhere accepted ways of slowing down deterioration off the cornea’s….
not as in a , you need to do this now way, but a first let’s see what the tests
bring back and then maybe over time this might become a solution for you if
things get too bad…
A slight “wake up” call, nonetheless… plus a couple of
bruises of where my friend was pinching my leg whilst watching the accompanying
video’s… :-)
Corneal Crosslinking...
Keraring Implants
In the end it was quite a tiring day, both mentally and
physically, but it’s a good start toward managing my condition even better, so
well worth it, this feeling itself was boosted aswell by the fact that I understood
from Suzanne the specialist that was doing most of tests , that she was kinda
impressed with the way I moved around despite
my restricted vision and the knowledge I seemed to have on the subject of KC
already, although she made also very clear that I might need to take better
care of the way I take care of my contacts and maybe clean my hands a bit
better whilst placing them in and out of my eyes…. Oh well, cant be perfect I guess….
J
Al to do now is wait for the results and get this managing
started…
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