Thursday, 30 October 2014

Acanthamoeba Keratitis Blog 1 (30/10/2014)

Hello there!

This blog has remained mostly untouched since I started. This is because I'm fucking boring and I don't really have much to talk about. Two weeks ago, however, I was diagnosed with a rare eye disease called Acanthamoeba Keratitis. This occurs when amoebae invade the cornea of the eye. I'm gonna be blunt, it's fucking awful. Really, really fucking awful. So, to help me cope with it, I thought it would be good to re-purpose this blog to act as a week by week documentation of how I progress with the disease; whether it gets better or worse, what medication I'm on, how it's effecting other aspects of my life, so on and so forth. Seeing as I am three weeks into this disease, this first blog post will cover those three weeks.

I have been a contact lens wearer for about 3 years. I hate the way I look in glasses, and I always have hated the way I look in glasses. It was only inevitable that I would start wearing contact lenses. I mean, WHAT COULD POSSIBLY GO WRONG?!?!?!?!?!?!?!?!?! For the longest time, nothing did. But on Saturday, 11th October, I GOT A HEADACHE. Nothing too unusual. It was focused in my right temple. I didn't really pay much attention to it.

The next day the headache turned into a pain in my right eye. Again, nothing too unusual. As a contact lens wearer, I was used to occasionally getting a sore eye from taking out a contact lens awkwardly or something. When this would happen, it would usually be gone the next day.

Alas, the pain persisted. And it got more and more painful as the days went on. It got to a point where I couldn't ignore it anymore. So, on Tuesday, 14th October, I went to an optician, who then referred me to Limerick Regional Hospital. At first, it seemed to be just a bacterial infection, nothing too serious. I heard the doctors mumble some big words to each other... acanthamoe...somethingorother. I didn't take too much notice. They told me that they needed to take scrapings to test for this thing, just to be safe, but that it probably wasn't it. They gave me a prescription for some eyedrops and painkillers and sent me on my way.

Thereafter, things seemed to get slightly better. I was certain I was on the mend. Oh, how wrong I was. On Friday evening, 17th October, I got a phone-call from the hospital saying that the scrapings had come back testing positive for Acanthamoeba Keratitis. They told me I had to come into hospital to begin an intensive routine of eyedrops. And I just shit a brick. Luckily, my lovely friends were there and they got me a taxi to the hospital and food and made sure I was a-ok.

At this point in time, I had no idea what canthermeber kerastis, or whatever it was called, was or what it meant for me. I didn't know if they were gonna have to cut my eye open or what. I was in a bit of a state on my way to hospital. But the doctors and nurses at the hospital, for the entire time I was there, were incredibly kind to me. They calmed me down. I learned that I would have to stay in the hospital for the next few days while having eyedrops given to me every half an hour. This was tough, as I wasn't able to get a proper nights sleep for 3 days. But it was for the better.

I was let out on Monday, 20th October, and put in charge of my own eyedrops. Mydilate 1.0%, three times a day; Brolene 0.1%, every hour; Polihexanide 0.02%, every hour. I learned more about the disease itself. It's incredibly rare, only a handful of people in Ireland get it every year. I am one of those lucky few. That said, I am incredibly lucky. As awful as it seems right now, it could be a hell of a lot worse. With me, they got to it early. A lot of the time people are diagnosed a lot further into the disease's life. This means it is A LOT more painful for them and takes A LOT longer to cure. For me, it'll take about 3 to 4 months to cure. People who have a more advanced version of the disease can take up to a year to cure. That said, I know this is just an estimate, and I'm mentally preparing myself for it to take longer. But I am grateful that's not any worse than it is.

It's taken a toll on my college work. It's difficult to concentrate, and my work has suffered as a result. But I am trying to keep up. Social life is out the window for the time being, but that's ok. I'm more concerned about failing college to be honest. That's my biggest worry right now.

As for the state of my eye right now, it's very red. Very, very red. It's pretty much permanently closed. Not much pain, but a definite sensitivity to light. Which again I am grateful for because other cases have been described as incredibly painful. If anything, this is effecting me on more of an emotional level than a physical one. I don't like leaving the house, mainly because it's too bright outside for my eye to handle, but also because I'm very conscious of how I must look to other people, some squinty weirdo with one eye open, constantly blinking. What the fuck's his problem? This added to the fear of failing has been playing on my anxiety quite a lot. But I just need to remember that it could be a lot worse and that I should be grateful that it isn't as bad as it could be. That said though, it still is quite difficult. Knowing I have months of this ahead of me is overwhelming. BUT I CAN FUCKING DO IT. YES I CAN.

I am starting to realise that this blog post is more of a brain-shart than an actual blog post, but there you go. I was in for another appointment yesterday and they said I could start easing on the eyedrops. I've dropped the Mydilate 1.0%, and reduced the dosage of the other two eyedrops to four times a day each. This is a good sign. I think. I hope.

I'm going wrap this up. I'll fill ye in on how I'm doing this time next week. Until then, make sure no amoebae get into yer eyes. It's fucking awful, trust me.

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