Keratoconus

World Keratoconus Day (10th November) highlights the importance of fundamental awareness and pioneering research. Without it, improved treatment options and hopefully a cure in the near future wouldn’t be possible. Keratoconus has complicated my life in many ways, including:

Distorted vision

Put simply, my right eye is so distorted to the point I can’t see anything out of it; the world is just one massive blur. My left eye isn’t anywhere near as severe – I can get by with the vision in the one eye day to day, but even then it’s not perfect. I get double and blurry vision, particularly noticeable when I’m concentrating on something such as the TV or looking at directions/signposts. To be able to see the TV clearly, I have to really squint my eyes, shut my useless right eye and tilt my head. This is very frustrating!

Due to my right eye not seeing at all and my left eye having to compensate and do all the work, my rubbish eye tends to drift – it often isn’t aligned with the other eye (especially when I’m tired) which has caused me to feel very self conscious and anxious. It is the reason why I often don’t like photos being taken of me, and why I’ve given up taking selfies! I wish they would work together more, it would give me much more confidence!

Dry eyes

This is a big factor of my keratoconus. Due to the bulged shape, the natural tears your eyes normally make can’t reach around the whole eyes. As well as this, my eyes have never shut fully – even while sleeping, which means my eyes regularly dry out at night and I inevitably frequently wake up with very sore eyes, despite applying a considerable amount of ointment every night!

Eye drops and ointment have become part of my life. Having to regularly apply them doesn’t bother me anymore, as it did prior when I was a teenager. I’ve got so used to them over the years, it’s just become a natural thing for me to do and I can’t imagine not having them now – an insane amount of eye drops during the day and ointment before I go to bed. It’s the cost of the prescriptions that bothers me; having dry eyes is really expensive and I didn’t choose it!

Very dry, sore eyes is the reason I can’t tolerate contact lenses. I’ve tried multiple ones and they have just aggravated them further, therefore I don’t bother with them. I wish I could get used to a lens for my right eye as I know I’m missing out on vision, but I never got on with them so I currently don’t wish to pursue lenses unless I have to, although this view may change!

Winter is worse for my eyes – heating really aggravates the dryness and soreness. Heating is a necessity and I love it, but it really doesn’t agree with them! Prolonged computer use also has the same effect.

Endless hospital appointments

Check ups, scans, endless lights being shone in my eyes, drops, vision tests in the Ophthalmology Department of Solihull Hospital – these appointments are the bane of my life. I understand it’s necessary and very important to regularly monitor the disease to ensure that it’s not progressing, but it’s tiresome. On the plus side, it is reassuring to hear that the keratoconus remains stable. Afterwards, I always get a grab bag of wotsits and a coffee to cheer me up. This incentive helps!

Anxiety

On 18th February 2015, I underwent the corneal collagen cross linking procedure to halt the progression of this condition. So far, it has successfully stabilised the keratoconus meaning it hopefully won’t deteriorate my vision further. Despite this, I still have the anxiety of it progressing further to the point where my left eye basically blinds me like my right one has. I fear that my driving licence could be revoked so my independence will be lost. This operation wasn’t pleasant but so far it has been worthwhile. I just hope that it stabilises it forever.

Why I consider myself to be lucky

Despite my struggles with this disease, I consider myself to be a very lucky sufferer; I can drive. That’s all I ever wanted.

I know the pain of not being able to drive; I started learning aged 17 like everyone else around me and loved it. I booked my test for January 2017, eager to pass and get my dream car so I could be more independent. It was the winter of 2016 when I got absolutely devastating and life shattering news – my vision wasn’t up to the required standard to drive, so I had to cancel the test. This wasn’t a shock; I’d feared this would happen all along, but it was something I found very difficult to accept regardless, especially since I’d already started to learn and knew how much I enjoyed it. It was horrific to watch my brother learn and pass, when I couldn’t get behind the wheel. I was in a very dark place in my life and was really struggling with the concept of not being able to drive. I couldn’t come to terms with it and move on, I was broken with the prospect.

Eventually, with a lens, I reached the required 20 metre standard and passed. Many months later, miraculously I discovered I could read a number plate from the required distance with glasses with my left eye, as it isn’t nearly as distorted as my right eye. The law states that you only need one eye up to the standard to drive, and I met this. Not having to wear a painful lens to drive makes my life so much easier and better in every way.

On the recent Fight for Sight Community Day I attended in London, there was a discussion about driving. Many other patients and their relatives with keratoconus said they couldn’t drive, and how life limiting it was having to rely on lifts and buses everywhere they went. Even if I found it easy to join in and express myself verbally, I wouldn’t have contributed to this topic as I felt so bad for them. I’d gone through all that and somehow it all turned out great for me. I felt guilty and bad that I was able to and they weren’t and almost certainly never will. It put my life with keratoconus into perspective and made me feel very grateful for what I had and could do. It doesn’t limit me as much as many other sufferers. Nevertheless, it isn’t easy to live with and I’m endlessly praying for a cure!