We had a great weekend of camping at Levuka 4×4 Park near Woodenbong NSW, spoilt by one thing. Yes you have guessed it, my eyes.
It’s amazing that two tiny pieces of the human body can cause so much misery. It’s not just the pain; it’s also the loss of vision. We were sqitting around the campfire and the sky was beautiful and clear. Everyone was saying wow look at the stars they are so beautiful; they really couldn’t believe it when I said I couldn’t see the stars. They were pointing out the Southern Cross and the Milky Way and all I saw was blackness. Nor could I see the trees, birds, or anything else that my fellow campers pointed out to me.
A combination of Keratoconus and Scleritis has really taken its toll on my poor eyes. They are really damaged and struggling to get any type of useful vision every day.
One thing that did scare me at the weekend was when we were sitting around the campfire. I kept freaking out thinking that the flames were lapping at my legs about to set my pants on fire. Everyone was like, settle down the flames are nowhere near you, but to my crazy eyes I was about to become a towering inferno. It really put a damper on what should have been a fun experience with my family. At times it became quite scary and stressful.
How I look affects me too, it takes away my self-confidence. My eyes (one or the other and sometimes both) are always bloodshot and look horrible. When I meet people I try to keep my sunnies on because I can only imagine what people are thinking when they see my eyes.
It makes me miserable and depressed and I really can’t see an end to it. I have an appointment with my eye doctor tomorrow. You know the drill, sit in the hospital waiting room for 3 hours and then either get an injection in the eye or increase the prednisone, neither of which seems to be doing much. We need to find a solution; I can’t be on the pred long term. The Methotrexate was meant to do away with the prednisone but that hasn’t worked so where do we go from here? I don’t know and that really scares me. What if they can’t do anything and I am left like this long term?
That is my biggest fear, what if they can’t do anything to help me and I am stuck like this forever. That doesn’t bear thinking about.
Sometimes I lay in bed and cry and wonder what my future will bring, how long will I be able to continue driving, working, reading and doing all the other things I love doing. I don’t know is the answer and that scares me.