Wow I definitely took a long break. So much has happened I don’t know where to start. I won’t be able to cover it all on this post. Do I start where I am now or where I was when I last posted? That’s tricky! Maybe I’ll just start where I am now.
As the rest of the world knows, we’re dealing with CoronaVirus. Fabulous. Lilly, who’s 11 now and is in Year 6, is being home-schooled by me. Me who has no paid job. Why? Because we now live in CANBERRA. We moved here in November. Stephen got offered a terrific job and I was a lovely supportive wife and said sure. Lilly was excited. With all the ridiculous roadworks going on in St Peters, we were all pretty sick of the noise, the pollution and the annoyance. I had a job I liked, looking after people wth disabilities. But I felt that I would be able to get a job easily here. I was so wrong. Because of the public transport being not so available here as it was in Sydney, organisations either want you to have a car, or a licence, or other jobs I’ve had interviews for I’m not experienced enough.
Canberra is nice otherwise, everyone is friendly and it’s nice and peaceful. I’m pretty scared of Winter – it will be freezing! But if we are still not allowed out, then it may not be so bad. But I’d rather be freezing. I’ve got a job interview in two days but I have a feeling they will be calling back about the fact that I don’t have a licence. Therefore no interview.
Seizures – I had the surgery I may have mentioned last year. I had a Stereoelectroencephalography (SEEG) almost exactly a year ago. That was an EEG where they placed electrodes inside my brain to see where the seizures were coming from. They shaved all my hair off. I was very concerned about all of that but it’s growing back. Then they informed me that I could have a stereotactic left frontal awake craniotomy and resection of the anterior insular cortex. This happened in July. I was woken (planned) during the surgery and asked to talk, because where they were operating was very close to the area in my brain where my speech comes from. AAAAHHHH!
I recovered very quickly from the operation. I went home and rested for six weeks. I didn’t have a seizure for almost three months and thought “this is IT! I’ve conquered epilepsy!” The neurosurgeon had told me there was a 50% chance that I would have complete freedom from epilepsy. However one weekend Stephen looked at me and and soon as I saw the look in his eyes I knew what he was about to say. And I was right. I had had a seizure. I’ve had 14 since the operation. They’ve all been short complex partial ones. In eight months. Considering I was starting to have at least one a week, and more than that before the operation, I think I’m going OK. The last one was just over a month after the one before. So, a little disappointing but at the same time pretty good. If that makes sense.
Job interview this afternoon has been “paused”. BOO!
Hopefully I’ll be back soon with more tales from the last four years! And happy epilepsy awareness day!
my-epilepsy 
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