Red... the brightest sharpest and most vibrant red that I've ever seen flashes across my vision when I'm in a dark room and turn out the light. White... the edges of my eyes glow with intense swirls of white lights when I hypo or have a headache. Blue... neon blue fireworks dance in front of me when I close my eyes and try to sleep. These colours are like nothing I've seen before, the patterns they form are beautiful, but the reason I can see the... it's not so beautiful.
These colours have intermittently flashed through my vision since being diagnosed with stage 4 diabetic retinopathy in 2011. The blame lies with me and me alone. The regret has been with me every day since I was told; "There's a strong chance you will loose your sight."
My story doesn't begin with diabetes; it does begin with naivety, but also ends with a lesson learnt. I hope that others can learn from my mistake too.
In 2009 I was suffering from persistent migraines. After weeks of pain I was finally admitted to hospital and an MRI scan revealed swollen tissue behind my right eye. Now remember... this wasn't diabetes related... The tissue had worn a hole through my skull and was pressing on my brain (this explained why neurofen didn't work.) The tissue was removed and every three months I was seen at a specialist eye hospital in London for scans and check up's. This is where my naivety comes in... I cancelled my retinopathy screenings because I assumed that any diabetic changes would be detected during these check up's. The doctors weren't looking for diabetic changes though; they were only trying to find the cause and prevention of the swelling.
In 2011 I was at a friend's house when I had my first bleed in my left eye. A tiny amount of blood followed my line of sight and I panicked. "Maybe it will go away" I thought to myself. I had no idea what the symptoms of retinopathy were and at the time I just didn't know what to do. The next day I woke up and the bleed had increased and spread across my eye. No one could see the blood when they looked at me, but looking out it was all I could see. By a massive coincidence I had an optician's appointment that day and it was there that I was told I had diabetic retinopathy and would need immediate laser treatment.
I was so ashamed of what I'd done that I didn't tell anyone the truth apart from my family. How could I have been so silly for such a long time? Having such high blood sugars for so many years had become the norm for me, and after a while I didn't remember feeling any different.
I'd gotten used to the thirst and sleepless nights, the lack of energy and not being able to concentrate. I thought I was invincible... but this had proved me wrong. For me the hardest part wasn't being told that I could go blind, it was seeing my mum cry for me when I told her... When she asked me why it had happened and I couldn't tell her because I had ruined my sight myself.
A haemorrhage in the eye will go over time, but it can take a long time, sometimes up to a year to completely clear. I had just finished the second year of my degree when I had my first bleed, but not being able to see lead to me taking 6 months out. I had to stay at home, only going out when someone could come with me. The majority of the six months were spent in pyjamas curled up on the sofa. All thoughts of my degree had gone. I couldn't see, so I couldn't finish it.
After 4 laser sessions and no improvement I was lucky enough to receive an injection of Avastin (a cancer treatment) in my left eye. My hospital were new to trialling the drug and I was willing to try anything. I also had an operation called a Vitrectomy to remove the blood from my eye. Avastin worked wonders for me and my sight is almost back to normal, and now my right eye is under review to have the same injection. Fingers crossed!
Me sporting a dashing eye patch after my vitrectomy
The treatment that I've received from my eye team has been fantastic, and I'm very lucky to have had it. But prevention is what's really important... Good blood glucose control (easier said than done, I know), regular retinal screenings, HbA1c tests, blood pressure checks, stopping smoking... everything that I didn't do but wish I had.
I really didn't believe anyone when they told me that my poor control could lead to this. I thought that the scare tactics were harsh and unnecessary, but I was wrong. This was the kick that I needed to make me listen and accept that I needed to work with my diabetes in order to gain control. Looking back from where I am now it all seems so simple, but at the time it was the hardest goal in the world.
My sight is so much better now and I have high hopes that my kaleidoscope eyes will soon get back to normal and my smile will reach beyond just my lips.