Keratoconus – The Big Fight

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Dawn_LE_TOPO

Keratoconus has really shaped my life, to an extent it has dictated what I can and can’t do.  Generally I don’t let it bother me, but thinking back when I was a kid I wanted to be a vet.  Because of the KC I didn’t do great in school, I tried my best but it’s hard when you can hardly see the words written on the blackboard, or read a text book without it being an inch from your face.  We all want to fit in and not stand out from the crowd so I pretended that I was like everybody else and blagged my way through school.  Now I have scleritis too and my eyes are in pretty bad shape I am feeling nostalgic and thinking about the past.

I remember when I was around 12 years old; I asked my dad what the time was because I couldn’t see the hands or numbers on the clock on the wall …. Actually I could barely see the clock.  He assumed I was stupid and couldn’t tell the time.  That moment really sticks in my head.

I struggled all through school and into my late teens wearing glasses that did nothing for my vision.  No one seemed to understand that I couldn’t see through them, everything was still blurred and doubled with streaks and starbursts.  People with advanced KC have really crazy uncorrected vision.

I couldn’t learn to drive until I was 19, the day I got my fist pair of RGP contact lenses was the best day of my life, suddenly I understood what it was like to really be able to see.  I went straight out and booked driving lessons.  After seeing nothing but muted blurs for my entire life I could finally see colours and shapes, the leaves on the trees, the number on the front of the bus, the expressions on people’s faces.  So many times I had walked past people in the street simply because I didn’t see them, they must have thought I was so rude, but I just didn’t see them.

I couldn’t stop staring at things, anything and everything it was so fantastic, things were starting to make sense.  It was like I had missed the first 19 years of my life.  That is so sad, it wouldn’t happen nowadays, parents would be all over their kids eyesight at the remotest possibility that something was wrong.

Pretty soon the RGP lenses stopped working for me; they would just drop out because my cone was too steep.  I remember one time sitting in a meeting at work and both lenses dropped out and rolled across the boardroom table.  After losing a heap of them it was time for a new plan.

I was thinking about a corneal graft when I discovered scleral lenses.  Scleral lenses are huge, the first time you see one you can’t imagine that it would fit in your eye but they do and they are very comfortable.  They vault over the cornea and sit under the eyelids so they can’t fall out.  Prior to insertion you fill them with saline which creates an artificial lens to look out of.  They worked really well and stopped me from having to have transplants.  The first couple of months of wearing them I had a real phobia about taking them in and out, as they really are massive.  It was something that I had to work really hard at overcoming if I wanted to wear them successfully.  They really made it so that I could live a normal life.

scleral-lens

Now many years on I feel like I am facing transplants again.  My optometrist can only get my vision so good in lenses and I have to wear glasses over the top for driving and distance.  The scleritis has made my eyes very sensitive and it makes my lenses very uncomfortable.  I have spoken to my ophthalmologist about my options.  My eyes are too far gone for either intacs or corneal crosslinking so grafts are the way forward.

Just one more hump in that roller coaster called life, wonder where it will take me this time.

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2 responses »

  1. Its funny, aspects of your story are so similar to mine, but also so different. When i could not read the blackboard i put in extra effort at home with the books, as you say, an inch away from my face. I spent my recess and lunch in the library. I was very angry at having keratoconus and was going to show the world that nothing was going to stop me. I lied about my vision to get my license and only ever drove in situations where I felt confident. Despite frequently walking into things i rarely mention this disorder outside of blogging. In work meetings i used to get accused of being disengaged. So i look in the vague direction of whoever is speaking and now get told that my piercing stare can be disconcerting. LOL. To cover my lack of long range vision among peers i have cultivated an academic eccentricity to explain strange responses or lack of noticing something. I also get inflamations. In 2013 one was so bad i was completely blind for two months! I also get crippling muscle aches and other problems – albeit these have gone away since i stopped eating gluten. Apparently there is a probability of celiac disease with Keratoconus. At 50 i have fought keratoconus long and hard and will not let it beat me. Especially so as my passions are art and writing ☺ I am saying all this to be supportive ☺ Don’t let it win ☺

    Liked by 1 person

    • Hi Greg, I guess we all deal with it differently.  When I was younger I switched off but now I am much stronger and dont let it beat me, as I like to say, im a tough old bird!   Good to hear some of your story, nice to know we are not alone.

      Liked by 1 person

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