Experience: I see the world through a layer of snow | Life and style

IIt was in February of this year that I noticed for the first time that something was wrong. I arrived at the end of my maternity leave with my second child, and I had recently recycled to be a manufacturer of wedding cakes to a food stylist, something I loved. In addition to taking care of two children with my husband, Chris, I was taking a lot of work. I was probably doing too much, but life was exciting.

That week, I had just finished a lot of work and I was exhausted. I started to notice flashing lights in my vision. I assumed that it was a migraine from over -work – I obtained them in adolescence – and I didn’t think about it too much.

The next day, we left London for the weekend to visit my parents. I woke up that morning and everything was strange – extremely shiny and alive, as if someone had plug in the world. It was like seeing through Static.

I mentioned it to my husband and my mother, and they said it was probably a migraine. But the next day, he was still there. It made me dizzy and I started to feel uncomfortable.

A few nights later, when I put my son in bed, I couldn’t see her face correctly. I started to get angry really. I was gradually losing my sight? Surely not, at 39? I didn’t have a headache, so it didn’t look like a migraine.

I went to A & e. The eyes service said my eyes were good, so I tried to put it out of my mind.

A few days later, I worked in a shiny white studio, and everything was overwhelming again. I finished in a & e. Again, I was told that everything was fine, and that it was probably a migraine and would pass.

But this is not the case. I started writing my symptoms: intense consecutive images – lively forms that persisted for a long time after having looked away – and a sensitivity to severe light. In the evening, when the light was low, I felt unbalanced. I had tremors in my hands and my face, a constant visual static and a horrible and thick fog.

I started to worry that it was something serious to do with my brain. I reserved a private neurologist, but the first meeting was six weeks. So I reserved an MRI, but it came back clear.

I started guessing myself. Did people think I was doing all of this? Was I? There was no obvious cause. Just this constant assault on my senses. I felt like I was losing my head.

Googling my symptoms, I came across something called visual snow syndrome. At first, it looked like a nonsense, this syndrome with a strange name and affecting around 2% of the British population. But each message described what I was going through.

In April, when I saw the neurologist, she confirmed the diagnosis. There is very little knowledge about this and no known remedy. She offered drugs to epilepsy, but as there was no guarantee that it would help, I decided not to take it. The diagnosis was validated, but crushing. No one around me had heard of it. Even most doctors have not done so.

I had to adjust my life in many ways. Some days are better than others – it depends on the stress or sleep I have had. I wear sunglasses almost all the time – even inside – because of sensitivity to light, which makes me feel a little silly.

I am easily exceeded. I recently went to a friend’s pool and the place had flashing lights, and I melted in tears and I had to leave. I remember thinking: “I can’t even spend time with my friends and feel normal.”

My four -year -old child is slowly starting to understand. In the morning, he generally likes to run and open the blinds, but the other day he told Chris to keep them closed, because “mom’s eyes could hurt”. It’s devastating. I want to be present, run and play with my children. This also affects my sleep. I wake up in the night, every night, with trembling hands, a blurred vision and this same foggy heaviness in my head.

I am looking for a clinical trial at St Thomas Hospital in London. I also plan to join a support group through the Visual Snow initiative in the United States, so as not to feel so alone.

Uncertainty is the most difficult. Will he ever disappear? Will it get worse? And the loneliness of it, because I look good. I continue with things. I can always do my job. But I navigate this constant noise.

As Emma Loffhagen said

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