I’ve realised I haven’t written much about the medical aspects of ichthyosis as much as the social impacts. Of course, I’ve written about the pain and being in hospital, but it’s never very technical. Maybe because it’s quite difficult to explain what pain feels like, or that there are some aspects of conditions that are best left unsaid because honestly, they are a bit gross and make me happy to live alone.
But tonight I find myself writing about the medical stuff. One of the medical impacts of ichthyosis I’m suffering from at the moment is very sore eyes. See, ichthyosis affects the eyes too. I’m not quite sure of the technical wording, but in basic terms, people with ichthyosis may find their eyes not closing fully, and excessive dryness of the eyes. It’s got to do with the lower lids – the medical term for this is ectropian – it means the lower eyelids sag and turn out, reducing the lubrication in the eyes. And so the eyes get dry, and gritty, and this may result in damage to the cornea. Reconstruction of the lower lids can be done via an operation.
In the two years that I’ve had this blog I’ve not really mentioned my eyes because they’ve been doing ok. I used to see the opthamologists regularly, but they were doing so well I no longer needed to see them unless an appointment was especially made. But since I’ve been on TV, I’ve noticed that I do blink a lot – unintentionally – and i guess this is to lubricate them. My eyes also run and I am constantly dabbing at them to remove excess tears and stringy bits.
When I was about 20, I was driving to work on a cloudy day. I had to pull over to the side of the road because my eyes were heavy and it felt like I had shampoo in them. The glare was too harsh for my eyes and I could barely keep them open. I remember working in the department store and just wanting to close my eyes. The next day Mum took me to the eye specialist and they told me that it is common for ichthyosis patients to experience problems with their eyes. They said my eyes were in good condition because I constantly moisturise my face with Vaseline and so the area around my eyes get moisturised too. And the opthamologists in Melbourne have said the same thing. I have a friend with ichthyosis who is now legally blind because of his ectropian eyelids.
I remember needing to go to the eye and ear hospital on the day Heath Ledger died, and I sat in the waiting room for hours waiting to see a specialist who gave me some drops. Since then, my eyes have been ok.
Until the past month or so when I’ve felt them deteriorate. My vision is fine. I can read from a distance, though I am not great with reading colour on colour – I think this is the combination of tears and Vaseline. But I now find the skin around my eyes is getting dryer, I’m getting more yellow build up inside them, and the sun really affects them, particularly when driving in the morning. You know when you go out on a sunny day and sneeze because the sun is bright, and when shampoo gets in your eyes. Well mine have felt like that. I guess I’ve not noticed much because I catch public transport to and from work. So on the days when I’ve driven to the post office before work, or going somewhere on the weekend, particularly straight after a shower, I’ve struggled to keep my eyes open. It is quite scary really. Yesterday morning I did not have sunglasses on me while out shopping, so I bought a pair and some eyedrops, which improved my eyes greatly.
I’m not sure of the steps from here. They’re not deteriorating enough to affect my vision, or for me to lose my independence yet. But I will be very vigilant in wearing sunglasses everywhere, not just when driving.
With this Christmas period approaching, I don’t think the opthamology clinic will be open, but I think it’s crucial for me to see a specialist this week. Perhaps another trip to the eye and ear hospital. Keep your fingers (and eyes) crossed for me.
I know mostly what to expect with the pain of ichthyosis. I can manage the day to day stuff. But it is the unknown that scares me a little. Especially not knowing how bad my eyes will get.