my-epilepsy

staying sane with day to day life…having epilepsy

It’s just not working

I’ve known that for quite some time now but after only five days between my last two seizures, I decided to call my neuro and finally say- “I want out”. There is just no point to these drugs. So I have an appointment in a couple of weeks to arrange a ween off this drug and a discussion of whether to replace it with anything.

So I’m happy about that. Also, happy I have got some work coming up. Some contract work. A nice way to get started back into the world of employment!

I’m sitting here watching the Australian Female Gymnasts. Bloody hell, they are amazing. I know it’s not a hugely highly regarded Olympic sport (or is it, I don’t really know) but they are so talented I can’t get over it.

That’s all really. Just crossing all my fingers that whatever decision is made next will work 🙂

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Been a while

I haven’t posted for more than a couple of weeks now. So what’s been happening? Quite a bit for me I guess. Actually I did write a post last week but I lost it when I tried to publish it – not sure about this wordpress business. And I got the shits and couldn’t be bothered to re-write it all over again.

So what’s my current situation. I’m sitting here on the couch at 9:30am Sunday morning with Lilly fast asleep next to me and Stephen reading one of his million work books on the other side of Lilly. No wait, he’s playing a game on his iPhone. Poor old Lill, she’s sick. There has been no other Sunday this time I can think of since she was a tiny baby that she’s been asleep. She’s been up since 5:30 throwing up; threw up last night too. I guess some sort of bug. I really don’t want her to pass it on!!!! Poor thing, but, it’s just so lovely and quiet when they’re asleep.

Mum was here, went home on Monday, it was sad to see her go, but Ali and I will be back up there in a few weeks so not long ’til I see her again. We had a lovely few days together. She witnessed a seizure, a very small one, but what she said was nice was that Lilly stayed with me the whole time, stroking my cheek and saying, ‘are you ok mummy?’. I love that, makes me so happy and proud of her. I had gone ten days between seizures so that was impressive.

Unfortunately then there was only six days ’til the next one, a couple of days ago. This is a kind of funny one that I can laugh at. Lilly had gone to bed, which I’m glad of, cos she would just think her mother was a weirdo. We were watching TV and I evidently started singing and dancing while still sitting (Stephen does a great impression, we both wish he’d recorded it). Then, as he’d realised I was having a seizure, Stephen paused the show we were watching. This apparently confused me greatly and I stood up and tried to figure out how to get the lady on the show moving again. To quote Stephen I was waving my hands across the TV saying “how do I make her move?”. Quite funny to watch I imagine. Once again, wish I’d seen it!

So there’s the epilepsy situation. No different. New topic – I’ve got some work coming up, just some sub-contracting work doing research, so that’s made me happy. Not sure when that starts but soon. That makes me happy. Still researching the occupations of the world to come to a full decision about what I want as my new career.

Oooh Lilly has sat up. Better go. I won’t leave it so long next time.

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Flight of the Conchords

Last night we went to see these two brilliant hilarious musicians and I loved 99% of the night. But there’s one song they do that I just can’t enjoy. I kept trying to stop being so sensitive, it’s just a joke, but their song ‘Epileptic Dogs’ I can’t find funny. I feel so dumb. I’m sure if it was a joke about some other disorder I would laugh but I just can’t see the humour! Here are the words:

Think about the epileptic dogs / Not all the puppies are born so lucky / Somewhere there’s a golden retriever, who’s having a seizure / Somewhere there’s a pup seizin’ up / And theres a labrador who’s shakin on the floor

Think about the epileptic dogs / Send lots of money, to stop these dogs from actin’ funny / Send a check in the letter to make a setter feel better / Come on and make a donation and save a shaky dalmatian

This is the remix / Epilep lep lep, Epileptic / Epilep lep lep lep Epileptic / Ep Ep Epilep lep lep, Epileptic / Ep Ep Epilep lep lep, Epileptic / Ep Ep Epileptic

I’m sure I’m overreacting right? What does everyone think?

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To be expected…

Exactly one week later, another seizure. With Lilly alone apparently. I was getting her changed into her PJ’s, and Stephen suddenly heard her saying “mummy – answer me!” several times. But what Stephen is happy about is that she stayed in there with me, which is what he is teaching her to do. Stay with mummy when she is having a seizure.

I can’t say one only yet, as it’s probably only 12 hours since the last one and more could happen today but I am trying to feel positive! Why complain when I have my lovely learning daughter and supportive husband right??

Cooking

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PS

Happy Birthday to my wonderful husband Stephen. Enjoy your Kindle!!!!!! Love you xxx

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Annoying!!

This post is called ‘annoying!!’ because this is the second time I am writing it. I ‘published’ it but it didn’t work so this time I will save as a draft often before I publish it and see if it works this time 😦

So it’s taken about a week to finally describe the seizure I had. It got me down for quite a while but now I think  I can laugh it off. I was on my way to a, well not a job interview but a “chat” with someone about my current status and what sort of work I was looking for. I didn’t exactly know where his office was so I decided to head into the city early. Found it easy peasy and then decided to go for a walk up the street to see what was around. Then next thing I know I was in a taxi on Mitchell Road Alexandria heading back in the direction of home. So I guess I’d had a seizure and in that time had decided I had no idea where I was and got into a cab and said take me to St Peters.

So I ask the taxi driver to pull over and check my phone. It’s five minutes before the meeting was about the begin aaaahhhhhhhh, and then I checked my recent calls and messages. I had called him and who knows what I had said / sang / yelled at him during my seizure so I took a deep breath and called him again. He said yes he saw that I had called (cringe) but hadn’t checked the message (phew). So my not quite functioning properly brain said I’d be there asap and would explain everything.

Lucky taxi driver, I asked him could he turn around and take me back to a particular street in the city, I recall him saying “but I just picked you up from there”. I am a bit vague but I have a feeling we had a long conversation about epilepsy.

As was the first ten minutes of the meeting back in the city spent discussing my epilepsy which i really didn’t want to do, but oh well. He was pretty cool about it. I had a real job interview yesterday, I was terrified I was going to have one, but yay I didn’t. Today is a week. Let’s see if we can go over a week.

Cross all those fingers and toes for me!

 

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