This week so far has been so mixed I'm almost afraid to say either way. The change in routine from school day to holiday is becoming more evident in Amy's moods as she gets older - and here was me thinking it would get easier. She's good at finding things to do but her continuous demands for attention do occasionally take their toll. If you think your toddler's temper is bad, you want to spend a day with my daughter. She may not be as bad as some but when she's in a mood it's damn difficult to bring her out of it without getting a barrage of abuse. However, I do thank my lucky stars now that I can drive again because I am able to take her places, like the beach for example, and a local village fair the other day. Getting out of the house if only for an hour, can have a big effect on her moods, making life a little easier for me. If only for sixty minutes.
Last weekend I got this crazy idea about taking Amy to the cinema. Crazy, you ask? Why crazy? For people with photosensitive epilepsy, a visit to the cinema is taking a risk. Some films are okay but others, most, are unsuitable for epileptics. Flashing lights and the flicker frequency of many movies is too much for a sufferer to bear and is a potential hazard to trigger seizures. I was told this by my consultant a couple of years ago and I've stood by what he said. But, I get fed up of relying on others to take Amy to the cinema and even though my sister has taken her a few times, the films that Amy now wants to see are ones I have to almost bribe others to watch with her, so you can see my dilemma. Going to the pictures is something kids, and adults alike, have done for decades and it's seen as an enjoyable experience. So I threw caution to the wind and sent out a tweet the other day asking for people with photosensitive epilepsy to contact me. I was overwhelmed with retweets, far too many to mention here, but as a result of them I was able to chat to a few different people from around the world, one in particular in Melbourne, who just so happens to be on the same medication as me. Catherine Kowalski (same name!) also had her meds changed about the same time as mine, two years ago. She gave me some great advice and has told me a few scientific facts also, which were particularly interesting - though I won't share them on here. We've agreed to keep in touch and I'm thrilled to have found a woman with the same condition as me, on the same meds, living thousands of miles away. The power of the online community never ceases to amaze me.
Then I chatted to a lovely gentleman whom I've known online for a while now known as Alastair Millen. He also has photosensitive epilepsy though has struggled to find the right medication to suit him. He's been a great support to me and has also given me some very useful information. Something we discussed was the potential danger of emergency vehicle lights, you know, the blue flashing lights we see on police cars, fire engines, ambulances. I was told by a police officer that the lights on police cars can affect people with epilepsy, something I found particularly disturbing, especially being a driver. Alastair wasn't sure if this was correct and so did a little research of his own; he said: "If there are several vehicles with their lights going, and there are a lot of reflective surfaces about, if it's dark and also if it's raining, you end up with the lights all going on and off at slightly different times and the reflections and refractions of those all combine and give the overload that kicks the seizure into happening." This makes perfect sense to me, and I reckon it could be a danger to people who suffer from other neuro conditions, too. I'm quite sure there will be a very scientific and technical explanation somewhere that I haven't found.
In conclusion to this, I won't be taking Amy to the cinema this week and I do feel sad about that. She's been very good in that she understands the risks involved - having witnessed me having seizures, I'm sure she doesn't want to go there again. So for now, I'll stick to asking friends and family to take her and we'll keep walking on the beach and in the fields. And when I'm out shopping, I'll look out for the films on DVD that she wasn't able to watch at the pictures.