my-epilepsy

Hi there, today I spent a good part of the day with someone who has greatly influenced my light-hearted nature in regards to the epilepsy. I met her at the Prince of Wales hospital in 2007 when we were both being tested to see if we could get the nasty bits of our brains that cause our epilepsy removed. We both failed. But became friends.

She’s recently had a baby, so obviously isn’t at work at the moment, so yet another person I can catch up with. I went to her flat in Kogarah and she and her mum were both there taking care of her cute little two month old. Her mum is helping her out so much and I think this is wonderful. Because Rania (she said today “use my name use my name!“) has many more seizures than I do. She might have long breaks between them (say, a couple of months) but then she’ll be smacked in the face with five in one day. And she has ones similar to me- no aura (warning) and then complex partial. And then she’ll continue to have a couple a day for several more days.

But the wonderful thing about Rania is that she is so light-hearted about them. When we first met she was having a very different type- more of an absence seizure where should be conscious the whole time and they would only last 30 seconds maximum. I saw here have one once – she just said “shit I’m going to have a seizure“, stood there for a few seconds then she was fine. But she had them every single day, several times a day. And they would just make her feel weird. But she would just laugh them off. She worked in customer service and knew that often she would stand there in front of a customer and say “shit shit shit shit shit“. And not be able to anything about it. And to be able to laugh at yourself about that is amazing, and brilliant. So I tried so hard, and hopefully succeeded, in becoming more like her, and just thinking, if she can laugh at that, I can laugh at anything.

She now has moved into the type of seizure that I have, for reasons no-one can explain. She still sometimes has the absence types, which she calls “half-seizures” now. For example when I met her today she said she’d had two and a half this morning.

We’ve had lots of funny talks about various seizures, like ones where we’ve both caught public transport way too far, we’ve danced naked after showers (please note, not together, that would be way too much of a coincidence) and other silly behaviours that just happen when you have complex partial seizures.

I’m not religious but if I was I’d say God bless her mum Josie who is there for her whenever she needs her. She is an amazing woman who is doing so much for her daughter and grandson (Rania’s husband works in a job that requires him up at 3:30am but the good side of that is he gets home at 2pm).

ANYway, it was a lovely afternoon (and great food too!!) and reminded me of how easy it really easy to not take yourself seriously.

So tomorrow will be a week since day one of my cluster of seizures last week. So if I make it to tomorrow, is that a week, or do I wait until when the group was over, i.e Thursday, so therefore Friday will be when I’ve passed a week? 

All a bit confusing. Just enjoy each day that I’m not having a seizure. And hopefully it will be two weeks, not one week. Rain rain rain again. At least that means I won’t have to train outside in the morning, I can do it in the comfort of my lounge room. 

Fascinating post I know, apologies! Not much more I can write – had a very quiet day today, booked all the accommodation for our little trip down South next week. Looking forward to that! And Canberra even though it’ll be freezing!! And did housework, so I felt like a real housewife today. Also made me realise I couldn’t do this for a living. Not that it was ever on my list, but scratch out ‘housewife’ from my future careers. 

Time for bed. Sleep tight everyone!