Originally published in http://metro.co.uk
A woman diagnosed with epilepsy caused by a tumour growing on her brain is refusing to let it take over her life – even when it means having a seizure on a first date.
Rosalie Marsden has just started a video series online in a bid to help others understand the difficulties of balancing life with epilepsy as a young woman.
She was diagnosed three years ago after suffering up to five seizures a day and not knowing what was going on. Since then, she says they can come and go at any time, and sometimes, at the worst of times. ‘They are really random, I can have one a day, or every few days,’ she told Metro.co.uk. ‘It can happen at any moment and when I’m doing something important which can be really frustrating. ‘I had a seizure on a first date, and during a job interview – I didn’t get it.
‘The worst was when I was giving a presentation and I suddenly had to run to the side of the stage and sit down and everyone was like “what is she doing?!”. ‘It’s pretty annoying.It’s something that I’m thinking about all the time.’ Rosalie, now 29, is facing an agonising decision over whether or not to have brain surgery to remove her tumour in the hope it also cures her epilepsy. But the terrifying consequences of the surgery could be that she loses her speech, memory, or worse. ‘It’s really really scary, and I’m still learning and trying to process this,’ she said.
In a bid to raise awareness and better understand her own help with others, she has started a blog called The Life of Brian – the name she has given to her tumour. ‘If I named it I took some ownership of it – it’s also great in explaining how I feel, I just say “Brian’s being a dick today” or whatever,’ Rosalie said. The name came about by an unfortunate WhatsApp autocorrect when attempting to break the news of her diagnosis to friends. ‘I told them I had a Brian tumour,’ she laughed. ‘It sort of just stuck.’
Rosalie’s seizures: What they feel like ‘They last about a minute, luckily I don’t fit or have any convulsions but I then take about an hour before I start to feel normal again. ‘Because my tumour is in my temporal lobe – which is where our memory is – I have short term memory loss after every seizure. ‘I can feel it coming and then I get this heatwave and nausea go through my body. ‘I feel really sad afterwards, I tend to need a nap and then when I am aware again I can’t really remember exactly what happened. ‘It’s like when you’ve been really drunk and the next day you have a patchy memory of what you did – that’s how it is for about an hour before and after the seizure.’
Rosalie first started noticing signs of epilepsy a couple of years before her diagnosis but said she found it terrifying as she had no idea what was happening to her. ‘At the beginning it was really scary because I hadn’t yet been diagnosed and I was having five seizures a day. ‘I thought I was psychotic, because sometimes I hallucinate and they give me deja vu. ‘I was going mad trying to understand it. I had been to see my GP before for anxiety and so I thought maybe that’s what it was.
‘It’s the weirdest thing, because I just woke up one day and had epilepsy. There was a lot of confusion and back and forth before I was diagnosed, but actually, once I had my diagnosis, there was this huge relief,’ she said. But getting it sorted hasn’t been an easy road – which is something Rosalie was keen to address in her videos. ‘Of course it was very scary knowing I had epilepsy caused by a brain tumour – but I felt glad I had something to call it now and could try to get it sorted,’ she said. ‘I am now on my fifth medication, I’ve had all sorts of problem from weight gain to one that made me incredibly angry. ‘I was so angry to the point I had to have anger management just to control it day to day.
She added: ‘My latest one seems to be going okay and even though I am constantly thinking about my epilepsy – I never think I’m not going to do something because of it. ‘I just have to plan my life out a bit more now.’ Rosalie hopes her video series will help her to raise money for charities close to her heart, The Brain Tumour Charity and Epilepsy Society, as well as some much needed awareness of the issue.
Originally published in http://metro.co.uk