I still desperately wanted to know if my vision was worsening because of the constant need I felt to increase the zoom on my laptop. But the doctor insisted that he could not establish if my corneas were steepening at that time without a second topography exam on his machines in a few months.
I was frustrated. Something just felt wrong.
When I moved to Stratford-upon-Avon on in August 2014, I was referred to a senior optometrist and a consultant ophthalmologist at Solihull Hospital. Again, they informed me that they could not establish if my corneas were steepening at that time without consecutive exams on their machines because all the machines varied from doctor to doctor.
I was incredibly frustrated.
In June 2015, I was provided with new rigid (RGP) contact lenses because I was still wearing the ones I had first been administered in Saudi Arabia. My optometrist felt I would get a better fit, to avoid them popping out whenever I blinked. But within weeks of getting the new lenses, I developed an eye infection and went to the emergency at Birmingham Medical Eye Centre. As usual the treatment was to remove my lenses and keep them out until the infection had cleared.
I don't think anyone realises how devastating even a simple eye infection can be for someone who is completely dependent on contact lenses.
Imagine if you were wheelchair-bound and someone told you that you could not use your wheelchair for weeks or months. That is a devastating concept. But I found that eye-care professionals told us patients this as casually as could be, giving little regard for the fact that you are completely disabled without your contact lenses because glasses cannot correct the vision of someone with Keratoconus.
When my infection eventually cleared, I still found wearing the new lenses extremely painful.
"Pain became my new norm."
I took 1,000 mg of paracetamol each day to tolerant and wear my lenses. Though I told my optometrist about the problems I was having and that I thought the new lenses were too tight, she assured me that they were fine - even though whenever I wore them a red line of angry veins appeared at the 3 o’clock and 9 o'clock areas in my eyes.
I felt like I was in the most horrible place possible – either I endured pain or I endured blindness.
The hours I could comfortably wear my lenses became less and less.
And my life was changing.
Having just started my company in the UK, I worried about how I would maintain it. Daily tasks were planned around my lenses. If I had anything to do, I had to “save up time” – I had to avoid wearing my lenses so I could wear them for the most pressing activities or meetings.
"I was at the mercy of my eyes, rationing my lenses wear time."
I remember one day in August 2015. During a meeting in London, the only thing I could think about was getting my lenses out of my eyes even though I had only been wearing them for about 1 hour. A friend had driven me down and I inserted them only moments before my meeting. But once back in the car for the 2-hour drive back home, I scooped them from my eyes.
I was in sheer agony.
My eyes were sore and throbbing like someone had been digging around inside them. On the drive back, I had to keep my eyes squeezed shut against the piercing sunlight. Even behind my dark sunglasses, my eyes watered and painful tears streamed down my face. And one thought kept racing through my mind: what am I going to do?
Then, things got worse.