I thought I would cover a few questions I hear often about either asking for better treatment, or making complaints about medical treatment, when you are not happy with the service or care you have received.
I think I've reached a point in my journey, of both my vision and my pain, where I've just had enough of not being disabled enough.
My vision loss is permanent. The photoreceptors in my eyes are damaged, like scarring, and I will never regain the vision back.
I have an eye disease without a name that falls under the White Dot Syndrome Spectrum (originally diagnosed as AZOOR in 2019, but changed to have no diagnosis in 2022) and my vision isn't 'normal'.
I am often asked what I can actually see, because I have a rare eye disease.
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.