Seven Years of Skipped Eye Checks Cost Me My Sight

When I was a teenager in the 90s, I'd turn up at clinic with a notebook full of random numbers. They were meant to be my blood sugar readings. I made them up. I hoped it would keep the doctors off my back so I could get on with my life.

I'd heard about people losing toes, limbs and their eyesight to diabetes. I brushed it off. I had no time for rules, or for anyone's advice.

At one point I didn't go for my eye checks for about seven years.

That's where it started.

What retinopathy actually is

The retina is the light-sensitive layer at the back of your eye. It's fed by tiny blood vessels, and years of high blood sugar damage them. That's diabetic retinopathy. The NHS describes three stages:

1. Background. Tiny bulges in the blood vessels. Your sight isn't affected yet.
2. Pre-proliferative. More widespread changes. A risk to your sight in the future.
3. Proliferative. New, weak blood vessels grow on the retina. They bleed easily, and scar tissue can form. This is the stage that takes sight.

Here's the bit that matters most: in the early stages, there are usually no symptoms at all. You can't feel it. You can't see it. The screening camera can.

I went through every stage.

What it took from me

In my twenties I had roughly 100 laser sessions, mapping both retinas to stop the leaks. When you have that many, it becomes normal. I was blasé about it, the same way I was blasé about everything.

Then one day a black fleck drifted across my vision. I knew straight away what it was. And in my head, I downplayed it.

It was a bleed. Next came Avastin injections, straight into the eye. They delayed things. They didn't stop what was coming.

Then my right eye went like frosted glass. Vicky and I had just got married. We were about to drive across the USA for our honeymoon, coast to coast. We cancelled it, and I flew back to the UK for surgery.

Over three to four years I had ten operations, five on each eye. Vitrectomies, where they remove the gel from the middle of your eye and leave a gas bubble to hold things in place. After one, I spent 15 days face down, 50 minutes down and 5 minutes up, every hour, sleeping face down every night.

One night the pressure in my eye went so high it didn't register on the machine. The bleed was pressing on my optic nerve. Three hours in the most intense pain I've ever felt, with no pain relief because emergency surgery had been called.

Today I've lost my right eye. My left has no side vision and poor night vision. I lost my driving licence. I lost months to recovery. It cost me more than I can put into words.

The good news

A lot of this is preventable.

• In the landmark DCCT trial, tight blood sugar control in Type 1 cut the risk of developing retinopathy by 76%.
• Retinopathy used to be the leading cause of blindness certifications in working-age adults in England and Wales. By 2010 it had dropped to second.
• In the UK, everyone with diabetes aged 12 and over is invited for free eye screening every 1 or 2 years.

What I want you to do today

Find out when your last eye screening was. If you don't know, or you've missed one, ring your GP or the screening service today. Put the next date in your phone with a reminder a month ahead.

If I could send one message back to the teenager with the made-up numbers, it would be this:

"LISTEN TO THE ADVICE. SPEAK TO PEOPLE. LISTEN TO EXPERIENCE."

I can't send it back. But I can send it to you.

The appointment you skip today is the operation you have later. Go.