I’ve lost a patch of vision in my right eye and I don’t think it’s coming back.

Two weeks ago, I took a couple of sick days off work. I had the flu and the pressure in my sinuses (I assume!) was playing absolute hell with neuralgia. I felt like I couldn’t hold my own head up and I couldn’t even cry because I was in too much pain. By mid morning on my second sick day, I was feeling less sore, so much that I could speak comfortably, but I still definitely wasn’t back to my normal levels of pain.

I had a bit of breakfast, washed my hair (then shoved it on top of my head in a wet bun, because drying it was way more effort than I could manage!) and snuggled up on the sofa with my cats to watch a film to take my mind off the pain, in a massive pile of tissues and suddenly everything went.. rainbow coloured.

You were probably expecting me to say that everything went black. It didn’t. I got vivid rainbow hundred-and-thousands type floaters in my vision. Bright tiny little worms of colour, everywhere I looked, even if I shut my eyes.

Then I noticed was missing huge patches of my vision behind these little rainbow worms. If I tried to look out of my left eye (my neuralgia side) I had big grey patches missing in big chunks, like a leopard print pattern over all my vision. In my right eye, I had a very minimal strip of vision at the top and the odd little specks elsewhere.

The ideal place to have this problem would have been in work. I work at an eye hospital, a non-emergency one, but still a building full of eye experts.

I text my friend from work and explained what was happening and was told to take myself to an opticians immediately and, of course by my usual levels of luck, my local optician wasn’t in, my next nearest optician refused to see me and the optician I’d seen last said to go straight to A&E. I rang my manager crying and spoke to one of the surgeons and was advised that A&E was probably best, especially considering I was off work with a neuralgia flare up.

This is literally my worst case scenario. A&E makes me want to curl up and give up. I have avoided it even on my very worst days. I still had my streaming cold, I was coughing every 30 seconds, my nose was streaming and I still obviously hadn’t considered drying my hair. I ordered a taxi, threw on some comfy clothes and called my partner to come and meet me at the hospital.

I was triaged immediately and told I’d need to see ophthalmology and then sat in their waiting room for three and a half hours. A&E water machines only provide cold water. They have no option for room temperature water. I could have really done without having to sit waiting for my drink to be a more suitable temperature when I had such a sore throat, as much as I enjoy the choice between having an uncontrollable coughing fit and triggering my own nerve pain..

After three and a half hours, I was sent to an out-of-hours GP and this is really where I started to get hysterical. I was under the impression that I would be sent straight for someone to look at my eyes. Instead, I sat next to a GP who pulled up Google and typed ‘floaters’ into his search bar in front of me. I was hysterical. I work in an eye hospital and I have access to Google and my own GP. I could have even seen a GP at the walk in centre quicker!

I turned to my partner and said “he’s Googling it” and he knew I was completely done. He took me straight into the ophthalmology inpatient unit and we found an optometrist (and team) to see me – with an unprocessed ‘referral’ from the GP I’d just seen.

I had my visions done and could only read the big ‘A’ at the very top of the chart with my right eye and, with my left eye, I could only just manage a few letters half way down the chart on the right side. I sat on the chair in the visions room and just cried my eyes out.

I’m used to pain problems, I’m definitely not used to problems that take away one of my senses.

Eventually, after my eyes being dilated and another two hour wait, I was seen by an optometrist, who could not diagnose me, but said it was probably an ocular (or retinal) migraine. I mentioned I had trigeminal neuralgia, so I was concerned that it might be somehow related (another brain problem, just what we need here!). He said to go home, to bed, and my vision should come back in the morning.

After seven hours in hospital, my other half packed me back into the car, whisked me through a drive through McDonald’s and took me home to bed, with no proper diagnosis, no vision and very little reassurance that the hospital actually knew what had happened to me.

I woke up the next morning, extremely light sensitive, to find my vision in my left eye had returned (even though it felt too bright to go out without sunglasses) and the vision in my right eye was unfortunately still missing about half. It hasn’t returned since.

The best way to describe my vision now in my right eye is that the whole thing looks super foggy and shadowy, with a missing patch that’s just grey in the very middle.

I thought I would document my eye journey, because my memory is the worst anyway and also in the hope that someone may stumble upon this who has experience with the same problems.

Click here for part two of my journey – a surprising discovery at work!

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