Epilepsy Action’s London Weekend for all was amazing! I felt honoured to be asked to tell my story at the weekend. I have epilepsy. I was involved in Epilepsy Action’s HealthE Mum-to-be campaign. I wrote a blog about my experiences of epilepsy and pregnancy – because 18 months ago I had a little girl called Riley.
Recently, one aim of mine has been to set up a support network for women with epilepsy. It would focus on women who are thinking of starting a family, are pregnant or are new mums. Being asked to help with workshops at the London Epilepsy Weekend for all gave me a great opportunity. I could start getting in touch with women and also speak to a specialist midwife and nurse.
I’m pleased to report that the weekend turned out to be so much more than just an information and awareness event. It was relaxed enough that it gave me the opportunity to make some wonderful friends, too. I could spend time with other people who understand the emotions that surround having epilepsy. In turn, that meant I felt more relaxed and able to be myself
I would never normally get up and dance in public, let alone sing – I'd feel too self-conscious! However, for some reason this weekend was different. I was up there singing ‘Summer loving’ and dancing the conga. I don't exactly know why, maybe because the people there just supported and encouraged each other. Or maybe there was a little part of me that thought, if I had a seizure here no one would care or judge. I also knew everyone would know what to do.
The weekend also gave me the opportunity to think about how epilepsy affects me and my life. One of the consultants presented an interesting piece of research. It suggested that quality of life was ‘normal’ in those people with complete seizure control.
However, the quality of life didn't vary that much between someone having the occasional seizure or someone having them daily. I guess the point is that epilepsy is unpredictable. It is always a worry, however large or small. I think maybe I worry about having a seizure at any moment more than I might let on.
Still, for me the most important part of the weekend was the friends I made, the people who just accept me for who I am. I'd especially like to mention Stuart and Kate – you made my weekend fantastic! It was my first weekend away from Riley and I couldn't have imagined a better way to spend it.
Local services manager, Marie Edgar, organised the event. Where do I start? Thank you for all your hard work, I don’t know how you managed to put it all together. The presentations and workshops were amazing. Getting so many professionals to give up their weekends is not an easy job. Then organising all of us volunteers to be in the right place at the right time… I just don’t know how you managed it all.
What made the weekend so special were all the extra activities that were packed in. There was a drumming workshop, cycling, karaoke, a disco, a hog roast, music, magic, face painting... the list goes on.
One of the things that made me feel more able to cope with my epilepsy was knowing I wasn’t alone. I don’t think anyone felt alone over that weekend. There’s a chance that may be because of my African drumming or our truly beautiful rendition of ABBA’s ‘Waterloo’. There really was no getting away from it!
At this event, it felt like we were all part of one big family. Thank you!