Hi, today I want to talk about my eye disease: Retinitis Pigmentosa.
Retinitis Pigmentosa is a degenerative eye disease that affects the retina and can lead to blindness. It deteriorates your eye sight and kills the retina cells and as you lose more cells you lose more sight. Retinitis Pigmentosa is also called “RP” for short. RP has certain ways of presenting itself you could call it, I am going to name a few that affect my daily life so you get a better sense of what it is all about:
I have noticed that since I have RP, my reflexes have gone downhill, they are rightnow extremely poor and for instance when I am watching a movie where there is some action going on, my eyes take very long in catching the action and in most cases they just cant see the action happening rapidly, so animated movies and action movies, where there are fights, are movies ia void because ei don’t really enjoy them much as the scenes happen so fast I miss them.
I also now confuse colors, yeah, like for example, I will see a sweater and say its balck when its blue, or confuse white with yellow, green with blue and so on.
I have cataarcts on top of the RP so neither helps but the RP defenetely ends up make you see colors in a wrong way.
When I am walking I use a cane now but I alsowear sunglasses all the time, they rptect your eyes from the bad rays that the sun produces that can damage your retina further.
Well, when I walk I need to be very careful if I am focusing on trying to see, if the day is sunny I will be blinded by the sun, so no way ic an see infront of me much, if the day is cloudy I need to be careful because sometimes I can get overconfident thinking I can see ok but then get hitted by a obstacle that has colors that are similar to the cloudy day light, this happened to me once I was going out of a building in a cloudy day and I walked fast and didn’t see a traffic sign and hitted it and endd up bleeding.
So I have learned my lesson and I am now very careful when walking anywhere under any conditions.
The best days to walk for me are days with mild sunshine where I can still see but is not so sunny.
Another way the RP shows up is when you are walking and you enter a building or house and you need at least 1 or 2 minutes to adjust your eyes before you can actually see anything inside a place.
I have noticed that if I am in a sea level city like NY is a bit less the time I need but still need it.
If the day is very sunny and you don’t have glasses on, the time of adjustment inside a palce is longer than if you have been wearing the sunglasses while walking and then you enter the place.
If the day is sunny and the palce you enter has a lot of light in my case at least the transition is faster so you see something faster than if the building has poor light.
Another symptom is to go into a building and go infront of the elevator and struggle to see the elevator BUTTON.
There are doctors that soley tell you you may have RP once they find out you have this problem, seems to be a factor that says your retina is not working well, because you are infront of an object yet you cant distinguish it.
I struggle a lot with elevators, not just the outside button but inside, I always have to ask for help as I never see the buttons or if is ee the rounded buttons area I don’t see what it says inside, what number it is.
Another thing I notice about my RP is that when someone says hi and wants to shake my hand I never ever see their hand coming.
Some take offense and I have to explain I dont see well, I don’t like to seem rude so it frustrates me.
Another thing is that I cant drive which must sound pretty obvious if you read my other symptoms, with my eyesight and my terrible reflexes and my cataracts is just a matter of how many people I would kill with the car LOL
The night is a tough one, I love the night so is veryyy frustrating not being able to see almost anything, I have night blindness, I see extremely poorly at night.
Is not that during the day I see great but much better for sure.
RP also affects my reading capabilities, at this point ic ant read anymore, only large print ic an read or very huge letters, I need a magnifying glass to read.
The computer needs all the low vision special stuff I can use, for chat, for email, for facebook, twitter, to surf the web, to read a document, to do anything there I need special stuff.
I use ZOOMTEXT that is a good tool, I say good and not great because for my computer and my needs fails to do many things in a way that is practical enough, so I use it but limitedly.
I use though all the time a magnyfing lens I downloaded for free, is called DRAGNIFIER and is what helps me read emails and surf the internet and chat although for chat ZOOMTEXT IS GREAT.
ZOOMTEXT can read you anything on the screen but due to all the programs I need in many cases gets too complicated so I use the lens instead.
I bought what is called a LOW VISION KEYBOARD and the keys are easy to see for me althougha t night is abit hard and that’s why I will start using a typing training program to help me type with no need to see the keys.
I love life and love who I am so having RP is nto so terrible rightnow, but one of the thigns I adore in life is to be able to see a womans eyes, and learn from her eyes about her heart and soul, I am losing that ability to see their eyes and that is sad for me, but I know soon enough there will be a cure and will be able to see the eyes of any woman and see my own eyes in the mirror which is very hard to do these days.
Well I hope this helps you understand RP abit better and how it shows up, there are many other things to say but I wanted to make it simple to read for my fellow low vision Bureau readers, some are visually impaired and some are not but want to learn about low vision.
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Thanks for reading this, hope it helped.