I'm not inspirational. I'm just sharing my journey.
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.
One day, I will wake up again and the pain will hit me literally square in the face and I am right back to where I started.
Losing my hair is just one more annoying thing that I'm dealing with that I don't want to. I thought I would put together a few tips for those currently in the same position as me.
If you are in a trigeminal neuralgia flare up, or attack, that is not managed by your medication at home and you feel like you cannot cope, you might find yourself considering attending A&E.
I am often asked what I can actually see, because I have a rare eye disease called AZOOR - acute zonal occult outer retinopathy.
It's challenging enough to bring a newborn baby home from the hospital, especially when it's your first child. Throw into the mix that my little girl was born prematurely, that we were supposed to move house the week she was born and, finally, that I live with trigeminal neuralgia - and what you get is the toughest few months of my life!
Sometimes on a high pain week, I don't want to do a lot of chewing, so it's very tempting to stick to soups and yoghurt, but that isn't very exciting.