My eye disease is rare, so there's not a lot of data about it. It's mainly reported by young, white females.. and not a lot of those! So I don't know what's going to happen with my eyesight. I manage well, but my vision still affects me on a day to day basis.
I am often asked what I can actually see, because I have a rare eye disease called AZOOR - acute zonal occult outer retinopathy.
During my journey to my diagnosis of acute zonal occult outer retinopathy (AZOOR), I was called in for a fundus fluorescein angiography (which is easier if we just call it an FFA!) and an indocyanine green angiography (ICG) and it was one of my stranger appointments, but definitely not the worst.
When I was diagnosed with AZOOR, I was still pretending that I could see. I don't like being told I can't do something. I highly doubt you will ever meet anyone more stubborn than me.
Both my physical health and mental health took a turn for the worse over the last few months - I'm having more issues than I know where to begin with and I haven't been able to write for a while, which, in turn, affected my mental health too. In terms of physical health, I'm feeling probably the worst I've ever felt in my life and like my poor little body falling to pieces and there's nothing I can do about it.
It is absolutely impossible to focus your eyes for 30 seconds and to not blink. I don't know anyone who can hold their eyes open and focus on some images for half a minute at a time!
I have to say, I'm pretty sick of being in the eye unit at the hospital. My second experience was better than my first, but after my third.. and fourth, I feel pretty sick to my stomach of the sight of it!
I've been miserable before because of my health, but this was something else - l osing your sight is pretty scary! I've learned to cope with pain, but I'm not used to feeling so vulnerable and partially sighted.