Perspective

Experience: I woke up blind twice a month for a year

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‘I would go to sleep at night wondering if I would be able to open my eyes in the morning’

I remember watching The Day Of The Triffids when I was younger and thinking how terrifying it would be to wake up and not be able to see. I didn’t think about it again until one day last year, at 39, when, about an hour after my husband, Paul, left for work, I woke up – and couldn’t open my eyes. Yet, under my eyelids, I could see. What I was experiencing was stranger than fiction: I just couldn’t lift my eyelids. I got up and felt my way downstairs, panic rising in my chest. Apart from wearing glasses for shortsightedness since I was a child, I’d never had any problems with my eyes.

Groping about for the phone, I tried to call Paul, but couldn’t work out how to dial and kept pressing the star and hash keys. Then, thankfully, Paul called me. I found the answer button and blurted out what was going on. He said he’d be back home as soon as he could.

While I was waiting, there was a knock at the door. I opened it just a crack, aware I looked a strange sight, a woman with her eyes closed and wild hair, wearing a T-shirt and tracksuit bottoms. “Are you the postman?” I whispered. Fortunately, he was, and a very sympathetic one at that. He even came in and dialled the doctor’s number for me.

Paul arrived home about 20 minutes later and took me to the doctor’s surgery. The GP was baffled and referred me to the nearby eye hospital. There, they gave me anaesthetic drops, which were painful but meant I could gradually open my eyes. Once I did, the doctor immediately told me it was an issue with my corneas, the transparent eye “covers”, which are made up of many layers. The top layers had come unstuck, and so, when I’d tried to open my eyes, they had caught on my lids.

I was given lubricating cream and told I’d be fine in a few days. I believed it, until a fortnight later, when the same thing happened again. And two weeks after that, when I again awoke and could not physically lift my lids. This went on and on – I could almost predict it to the day. It was scary, frustrating and painful; to make things worse, my eyes, although closed, were incredibly sensitive to light, which meant that when I was “blind” (usually for about two or three days at a time), all the curtains needed to be shut and I had to stay indoors.

Life changed dramatically. We couldn’t plan anything. When you are blind, you adapt, but this was the worst of both worlds: either being unable to see and having to navigate a house not designed for anyone with vision impairment, or going to sleep at night wondering if I would be able to open my eyes in the morning. Every night, just in case, Paul would clear a pathway to the armchair, place meals and drinks in specific places, and put bits of tape on the remote controls so I could feel for the right buttons. When it happened, I would just sit all day, listening to audiobooks. I’m a jewellery designer, but the condition meant I was unable to create intricate pieces. My business partner began to suffer. I dropped three clothes sizes with the stress.

I Googled my symptoms and all I could find was an American forum that said I would have this condition for life, and it would get worse. I had an operation at the eye hospital to remove the top layer of my corneas. I was awake during surgery, so it wasn’t very pleasant. Afterwards, the episodes became slightly less frequent, but still occurred every three weeks. After six months, a specialist diagnosed me with recurrent corneal erosion syndrome, and put me on a course of treatment that involved steroids, lubricant drops, vitamin C and omega-3 supplements.

I haven’t woken up unable to open my eyes for about eight weeks now, and Paul and I are crossing our fingers that it won’t happen again. He still leaves a drink and a couple of biscuits by the armchair just in case, and I have to wear goggles to protect my eyes when I’m in the garden. The neighbours must think I’m quite eccentric, but as long as I can see, I can live with that. theguradian