They saying, you never know what someone's life is like until you have walked in their shoe's-it is true. You don't know what someone is experiencing or feeling and sometimes they can't explain it well enough for you to understand. I know that I can't, I never can find the right words to describe how I feel.
With my syndrome every day is a battle and some people don't understand. Sometimes I get the feeling that they think I use it as an excuse to get out of something. But it is not the true. Every day I have pressure in my eyes that sometimes develops into a migraine, but the pressure is always there. Some days it is worse that I just have to close my eyes to make it go away. When the pressure is there, it makes my eyes more sensitive to light which causes head aches as well. Through out the day I will have little balls of white light or dark weird shapes, that most people call floaters, that block my line of vision. The floaters happen more than the light. When this happens it is not painful, but frustrating because it blocks the only vision I have left. The floaters or light doesn't go away quickly and tends to linger. Sometimes I will make a grunt of frustration and a deep sigh, because I can't see what I'm doing and know there nothing I can do but work with what vision there is and wait.
Some people ask why I don't use my cane everyday. Well one reason is because I am embarrassed and it makes it too real for me. I guess you can say it is denial. The second reason is because it depends on the weather and if I know the area. At night and I don't have anyone to guide me, I will use it. I am completely night blind and I can't even see when a hand is being waved in front of my face. Every day I wake up wondering what today will be like for my eyes and how much of a struggle it will be. On cloudy, overcast days my vision is a slight issue because it is "shadowy" and I feel that everything is blurry. On bright sunny days, well you think I would love those days, but I don't. I get instant headache because my eyes are way too sensitive and sun glasses only help to a point. I usually can't see what I'm doing so I have to use my cane. If I am in a new environment, I use my cane unless I have someone guiding me.
I avoid going to new places because my anxiety gets the best of me. When I go to places that I don't know the surroundings or it is too crowded I don't relax. I am constantly scanning the area to learn what is around me and how to get around in case the people I'm with wonder off, which does happen . I never had anxiety until I learned of my vision loss, and now it is an obstacle that I have to work with. It causes me to say no to going out with friends or going to certain restaurants because I am not comfortable and if my anxiety gets too bad it makes me sick. It doesn't make a fun night and a good person to be around.
I may be a hermit, but I am okay with that because by the end of the day my eyes are too tired from all the straining and pain that I just need my space so I can let my guard down and relax. People may not understand, but I'm still learning on how to manage it and deal with it so I can someday overcome that anxiety and not be afraid to go into a dark bar or restaurant. It is baby steps for me and when I don't have someone else in the same shoes with me helping me along, it is going to take sometime. I may be calm on the outside about it all but in the inside I just wanted to scream and throw stuff because I'm angry this is happening to me and I'm frustrated that I can't do the things I loved or have that independence of driving. I am far from perfect.