Another RP files. Keeping it real. Retinitis Pigmentosa is
my eye condition and so far, there is no cure. How long will I be listening to
that said to me from medics and words written on line?
Questions of late with regards the eye disease I have are as
follows.
“I’m terrified of going blind,
how can I overcome this?””
“When
I’m blind, will it be dark?””
“How will I cope when I’m blind. I try to
walk around my house and I bump into everything.”” Firstly, I was terrified beyond
belief when I went blind. It was too fast and it was the end of my world. I had
to live as I had a little life before me. Suddenly that beautiful little baby
who looked up at me with such trust in his eyes only had me and who did I have?
Him, that’s who. A one-year old baby. I hung onto him trying not to show my
fear but our souls connected and my real-life angel held onto my heart and he
gave me enough fight to carry on! In a way that is unbelievable to most people.
He was my saviour. I had to live for him. Without me, he had no family, no
blood. I only know that feeling too well. Born to an oven who hated me and
despised the fact she had to touch me to hand me over to social services at days
old, to verbally know I belonged to a sick man who was named as my father only
in the ovens family not on paper. On paper I was that B word without a father. My
son wasn’t going to be me. he was going to feel love and be loved from the womb.
So, I had to carry on for my baby. But I so didn’t want to. I
didn’t belong in this sighted world. I was absolutely terrified suffering from
Charles Bonnet Syndrome, this is where your brain still sees and normally it’s
bad things. In my case it was always evil men hiding behind doors in my house
at the time, for me only, they could have killed me if I was on my own, but not
my baby. And not me as I had him to look after. I shall put a link at the
bottom of this blog to explain about the horrific CBS as most people who loss
their sight suddenly suffer from it. So, in short, I know exactly how you feel
when you talk about being afraid. No groups back then, no one. Just me and my
baby.
So next question was what do I see when I am blind? I always
say the same it’s as if looking out of your ear, or elbow. Then some days I see
a white sheet. Other days grey. It’s never black. It’s only dark when my brain
kicks in and tells me it’s dark many times in a pitch-black room, I see bright
white as if a sheet is in front of me. I screw my eyes up and tell myself stop
being silly, it’s dark. My eyes open and want to clean the window of my soul,
but there is no cloth that will do that for me.
Every person with RP is different remember that. So, you may
see shadows if, you lose your sight. You may never ever go blind. Not everyone
does even though the Doctors seem to like to tell us we will and some even put
a number on our so called dark days. Remember there not normally dark. I saw darker
when I had sight when I would step outside of my front door in the evenings.
Finally, how will you cope going around your house if, you
go blind? It’s easy, why? Because we have no choice. We either sit in a chair
all day and go to bed by night or, we cook, clean host parties, decorate the
house for Christmas, if you haven’t read my Christmas Diary’s please take a
look, some are really funny. Yes, I’m blind and I laugh. Believe me, I cry too
and get really disillusioned by others. But my house I walk around without a
problem and have even been known to cantor like a racehorse especially when my
door bell goes and I know there is a parcel and if I miss answering the door
before the delivery guy goes, it’s a pain to try to get the parcel back out for
delivery. So, I have been known to jump over my Waggatail and the Little Fella.
(Our Guide Dogs) yep, hub is blind too… we come in a pair. Double trouble.
I have a small house with lots of rooms. Three bedrooms, an
office, a tiny shower room, a small bathroom and a downstairs toilet. A hall,
small… Little living room, another tiny hall, a good-sized kitchen but no room
for a table. And finally, a large conservatory. I rarely bump into anything I don’t
use a white cane I just remember where things are. No one moves furniture apart
from me… Hub not impressed about that. But we just adapt. My Husband was born
blind, he has never seen the sun or the dark. He sees nothing at all bless him.
He doesn’t have RP. Doctors don’t know what is wrong with him. Yes, like
someone said today, we can see the moon and new planets we can send a man to
the moon but we can’t see our fingers in front of us. We can’t be given the
gift of vision.
When I first went blind, oh my word to cook was hell. To know
what I was cooking. As for frying an egg? I couldn’t touch the pan it was too
hot. The egg was weightless. Had I hit the pan? Did I miss? Chopping, I have
never used tools to help me apart from my knife. Sharp one. When cooking an
onion, I put my thumb on one side of the onion and fingers on the other place
the blade in between my fingers and chop. I can do it really fast and it has
been known to chop in time with whatever music I have on at the time.
I iron after I have washed and dried the clothes, and we hang
out clothes out on warm days too. I attempt to garden but I am rubbish at that
as I would be if I had sight.
I will try to get time soon I promise to write a blog on
tips to coping with the housework if it will help you.
A group I am in online is called Retinitis pigmentosa
research and potential treatments. I like it because it’s only purpose is to
show what research and hopeful treatment is out there. I look for us every few
days and believe me if there is ever a breakthrough or something I think will
benefit those with RP, I shall publish it.
The group have some wonderful admins and members of all
walks of life. There are Doctors in the group who give their time to us free
and they too are so informative.
Browsing through the comments today there was talk of when
we get colds/flu for example. I know when I used to go to Russia for eye
treatment so many years ago, if ever I got a cold, my treatment would stop
immediately and I know throughout life, if I feel unwell my sight was always
really bad. Kind of dark. Another reason perhaps to get a flu jab? Hmm. I have
very mixed views on that but if you are fine about it, then possibly you may
want to think about this?
Also exercise, Hmm. If we do it apparently, we feel better…
I guess if we don’t overdo it. If we feel healthier in our mindset, then
possibly we will see a slight improvement in our vision? Well, too late for me,
but still I wait for the C, word.
Whilst we are all waiting for that word that starts with C, I
keep dreaming, wishing hoping for a cure. In the meanwhile, treatment to
restore my vision and yours would be brilliant. Some say work on keeping vision
for those who already have it? Oh, thanks guys, (I’m Okay Jack stuff you) Well
the way I see it pardon the pun, if there is treatment for blindness, and you
do come down my road, then you too will get the treatment and you will
appreciate it more because you have lost so much with your vision. But if there
is treatment, you will be sharing my boat with me.
it won’t be for long I
hope. So, how long for that word to turn into reality? No one knows that answer
sadly. Experts are saying not in my life time… I’m not that old… Over forty
under fifty smile. Heck, how long do they think I will live for starters, I could
live until I’m 100, so, for over fifty years they are saying there will be no cure?
Well, how on earth can they say that. I think a cure will be just something
that will be discovered by accident, may be scientists will be looking for
something else to do with I don’t know, Alzheimer’s perhaps or the preservation
of the Barrier Reef and hey presto, suddenly a cure for blindness could be
born.
Out of all the research I have read over the past few days,
this link holds the most hope in my opinion. You may have found a better article,
if so please let me know through Facebook, Google Plus follow me on my blog
page or email me at
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