I know the sun is shining because my eyes burn though there
is no light getting into them. It must look funny when I am in a car.
Not driving I must
add.
I have to close my
eyes if it’s sunny. The driver and sighted passengers must wonder why? But our
eyes still are affected though there is no sight there.
I used to dread sunny days when I could see, as it used to
blind me, quite sad really when you consider that my eye condition Retinitis
pigmentosa, you can’t see in the dusk and night time, so sun? Yeah? Em, no, not
really. I used to just see white in front of me and then I would go into a
building and again not be able to see for ages until my eyes adjusted, dark
rooms/corridors? Forget those. Give me the right environment and I could see crystal
clear, but only bits of what I was looking at. If I was looking at someone’s
face, I would see for example their eyes, well, on good days that is, most of
the time, only a part of one eye. I would have to move my eyes around their
face to see other features. If the
persons face moved quickly to the left and right, I wouldn’t be able to see
anything.
We with RP have to focus before we can tell what the subject
is. It is a really complicated eye condition and no wonder in the early days,
Drs used to bring in students to look and even Doctors used to get excited to
have a look into the then unknown.
Now days, I can’t see anything and it has taken me years to
stop even trying to look. Really, when I lost my sight, it was the end of my
world. It took years before I realised that I could cope. Still I am in a lot
of pain with my eyes and another day like today I feel as though both of my
eyes are being kicked, or poked really hard with pens. This is the only way I
can think about telling you what the pain is like for me.
It’s bad enough not being able to see but to be dealt with
this horrible tiring pain is so bad too.
Some people wonder why we are so tired. Well, it’s because
we have to constantly remember where things are, where we have put items and
who else in the family may have left something lying around.
Our minds always working overtime. Thinking about things
that sighted people just take for granted. Dusting in my house is a real mind
game. I have so many ornaments and some would say why make life difficult? Why
not get rid of everything? Why? My house is my home, I just need to keep my
memory and take care.
Cooking? Oh as I have said before, Hub and I need to lose
weight, so we don’t starve. Again, making a meal takes up so much energy, but
we do it and no one can take that away from us. Some people are shocked that I
iron, yes, me and millions of other V.I.P’s. Who else would do it for us? We
can’t all afford a maid.
For me, ironing I always fill it over the sink in case I
miss the tiny hole with the water. Dry the bottom and make sure it’s always
clean as when it gets that awful lime scale on it, you could put brown marks on
your clothes without knowing about it. I plug it in and if I have to put the
iron down to get another item of clothing, I put it in its holder with the wire
towards me. I feel for the wire and it leads me up to the handle of the iron
without touching the hot plate.
As for the item I am ironing, well start at one end and you
can’t go wrong. Always keep the item tightly pulled. Hang them up straight away
if you just throw them on the back of a chair to put away later, you could A,
go to make a coffee, someone comes to the door, you end up forgetting to put
away things and the house will look untidy. I know all about that… Also if you
put the clothes away at the end of each iron, you don’t have loads to do after your ironing. So, ironing? Go slow with your
clothes
Don’t hurry it or you will burn yourself. I have to use my
spare hand a lot to see where I am up to, trying to remember to keep the other
hand with the iron in away from my spare hand. My hands do what sighted people’s
eyes do.
Vacuuming the house? Oh I always miss some, all the wires
around the edging is impossible. My Husband gets on his knees to vacuum. No way
I’m getting down there, so I just try to again remember where I have been,
covering each part of the floor. When in the kitchen though, or dining room,
clean table/surfaces firsts so crumbs go on the floor, if you vacuum then do
that, your floor will look no better.
Windows or other glass? Well, whatever way you end up
cleaning your windows, again start at one end and just remember where you have
been, but always end up using paper towels to wipe clean then you won’t end up
with smudges.
I do my best to avoid windows, I really do… Goodness knows
what they look like but I know sighted people who must think they have cataracts
as their own windows are filthy, Hehehehehe.
There is not one job I don’t do around the house. I am proud
that I can do it, though I understand people who feel like they can’t. If you
can’t don’t stress about it, there are sighted people who don’t do their
housework, they get a cleaner, either because they are lazy, or just don’t like
house work, not saying I like it, but I do, reluctantly.
Okay, off for now to look for me feathered duster.
Not.
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