Experience: I See The World Through A Layer Of Snow

It was successful February of this twelvemonth that I first noticed thing wasn’t right. I was coming to the extremity of my maternity time off pinch my 2nd child, and had precocious retrained from being a wedding cake-maker to a food stylist, thing I loved. As well arsenic looking aft 2 kids pinch my husband, Chris, I was picking up tons of work. I was astir apt juggling excessively much, but life was exciting.

That week, I’d conscionable vanished a large occupation and was exhausted. I began to announcement flashing lights successful my vision. I assumed it was a migraine from overworking – I used to get them arsenic a teen – and didn’t deliberation excessively overmuch of it.

The adjacent day, we near London for nan play to sojourn my parents. I woke up that greeting and everything felt unusual – overwhelmingly agleam and vivid, arsenic if personification had plugged an electrical existent into nan world. It was for illustration seeing done static.

I mentioned it to my hubby and my mum, and they said it was astir apt a migraine. But nan adjacent time it was still there. It made maine dizzy, and I started to consciousness uneasy.

A fewer nights later, arsenic I was putting my son to bed, I couldn’t spot his look properly. I started to get really upset. Was I gradually losing my sight? Surely not, astatine 39? I didn’t person a headache, so it didn’t consciousness for illustration a migraine.

I went to A&E. The oculus section said my eyes were fine, truthful I tried to put it retired of my mind.

A fewer days later, I was moving successful a bright-white studio, and everything felt overwhelming again. I ended up backmost successful A&E. Again, I was told everything was fine, and that it was astir apt a migraine and would pass.

But it didn’t. I began penning down my symptoms: aggravated after-images – agleam shapes that lingered agelong aft I looked distant – and terrible ray sensitivity. In nan evenings, erstwhile the light was low, I felt off-balance stepping around. I had tremors successful my hands and face, changeless ocular fixed and a horrible, heavy encephalon fog.

I started to interest it was thing superior to do pinch my brain. I booked a private neurologist, but nan first assignment was six weeks away. So I booked an MRI, but it came backmost clear.

I began to second-guess myself. Did people deliberation I was making each of this up? Was I? There was nary evident cause. Just this changeless battle connected my senses. I felt arsenic if I was losing my mind.

Googling my symptoms, I came crossed thing called ocular snowfall syndrome. At first, it sounded for illustration nonsense, this syndrome pinch a strange sanction and affecting astir 2% of nan UK population. But each station described what I was experiencing.

In April, erstwhile I saw nan neurologist, she confirmed nan diagnosis. There is very small knowledge astir it and no known cure. She offered epilepsy medication, but arsenic location was nary guarantee it would help, I decided not to return it. The test was validating, but crushing. No 1 astir maine had heard of it. Even astir doctors haven’t.

I’ve had to set my life successful galore ways. Some days are amended than others – it depends connected accent aliases really overmuch slumber I’ve had. I deterioration sunglasses almost each nan clip – moreover indoors – because of nan ray sensitivity, which makes maine consciousness for illustration a spot of an idiot.

I get overwhelmed easily. I precocious went to a friend’s hen do and nan venue had flashing lights, and I burst into tears and had to leave. I retrieve thinking, “I can’t moreover bent retired pinch my friends and conscionable consciousness normal.”

My four-year-old is slow starting to understand. In nan mornings, he usually likes to tally successful and propulsion unfastened nan blinds, but nan different time he told Chris to support them closed, because “Mummy’s eyes mightiness hurt”. It’s devastating. I want to beryllium present, to tally astir and play pinch my kids. It affects my sleep, too. I aftermath successful nan night, each night, pinch shaky hands, fuzzy imagination and that aforesaid foggy heaviness successful my head.

I’m looking into a objective proceedings at St Thomas’s infirmary successful London. I’m also considering joining a support group done nan Visual Snow Initiative successful nan US, to not consciousness truthful alone.

The uncertainty is hardest. Will it ever spell away? Will it get worse? And nan loneliness of it, because I look fine. I get connected pinch things. I tin still do my job. But I’m navigating this changeless noise.

As told to Emma Loffhagen

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