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!

Refer back to part of the end of yesterday’s post …”because being alone and having a seizure,  there is never a 100% guarantee that I have actually had one…”

Well this happened today. I had a pretty lazy day, most of it housework and watching a movie on DVD. Who has seen Donnie Darko? Well it’s an awesome film that I haven’t seen in quite a while so decided to watch that. Here’s what happened (to me, no film spoilers included here).

The first clear memory was of the scene with the three kids in the hotel room, arguing. Oh and before that I am about 85% sure I pressed that button ‘Play Feature’ that you have to before you start the movie. Those of you who don’t know the film, this scene is about 20 minutes into the film. So what happened to the first 20 minutes? Several things have been going round in my head…

I could have fallen asleep – but really who puts a film on and immediately falls asleep? I could have started watching it a while ago and the movie when I put it on again had remained at the scene I left it in. But in both these situations, why on earth would I not rewind? As those of you who know the film, there includes a pretty strong dramatic opening scene in the first 15 or so minutes. Today all I remember thinking was “well maybe in the Directors Cut this is where it starts”. That’s pretty stupid right (heads nod if you remember the movie, if you haven’t seen the movie, then see the movie). So the third and most likely scenario is- I had a seizure.

The thing is though, I completely enjoyed the movie, I felt 100% healthy, I then walked to Camperdown to pick up Lilly feeling absolutely fine. This makes me really happy. As well as the fact that it was two weeks today since my last seizure rather than one week. Even though I can’t 100% guarantee it was a seizure, I’m pretty sure it was. And because I was on my own, I could sing, dance, dribble, do a striptease, do anything because there was no-one here! So maybe it’s not such a bad thing, on my own, at least, at home. Having it outside would be another story. But it didn’t happen, one day it might but no sense worrying about things that haven’t happened yet 🙂

Well everything started as per usual – I lie in bed listening to Stephen get Lilly up, this is usually around 6:15am.

Lilly: “I want to get uppppppppp!!!!!!!” (doesn’t quite yet understand that she can get out of her bed and leave the room herself)

Stephen: “Good morning Miss Lilly!”

Lilly: “I’ve done a poo”

Stephen: “Yes I can smell”

etc etc etc, until she is dressed for the day and then I get my lazy butt out of bed. Then I generally make her a babycino while I make a coffee for me and a tea for Stephen. Then daddy is gone and we wait for either a taxi or our friend who borrows our car and drops us off at child care on the way to his work. Our friend came this morning and we got to child care as per usual, had a quick chat to staff, left and then………..what? Now what? It was weird!!! But kinda cool. I decided to go and do something I hadn’t done alone in ages – went and had breakfast and read the paper in a local cafe. Aaaahhhh now this is the life 🙂

Then I went home via the local chemist to pick up a few supplies, then came across a place that did massage. Thought I’d just inquire, but five minutes later I found myself having a 60 minute hot stone essential oil massage! Woohoo! Of course, I had to have “the talk” – I think I made the masseuse (or is it masseur, it was a female) a bit uncomfortable, but I thought it was important as it will be two weeks tomorrow since my last seizure so I’m just waiting for one to happen any minute. But nothing still! (touch wood touch wood!!).

So after the massage that was great but too short, I wandered home via a few places that Lilly and I used to visit when we walked to child care, then got home and did a bit of exciting housework. Then eventually back to pick her up- another lovely walk through the park.

Then life back to normal. A pretty good first day as a non-worker I think. I am going to try and keep busy because being alone and having a seizure, there is never a 100% guarantee that I have actually had one. I don’t like doing it to people, but they are handy in that they can tell me if I’ve had one or not!