The Epilepsy Action Weekend for All was amazing! It was great to speak to some women thinking of starting a family in the future, mum's to be and new mum's. But on top of that I learnt so much on a range of things which I will talk about over the coming days...
But I want to use this post to just talk about how the weekend turned out to be more than just an event to raise awareness and learn new information...
Spending the weekend with people who understand the emotions that surround having epilepsy, somehow I didn't worry so much about things. I could be myself more in such a social situation. The Saturday night they had a disco and karaoke. I would never get up and sing and even dancing I'd feel self concious, but for some reason this weekend I was up there singing summer loving and dancing the conga... I don't exactly know why, whether it was because the people there just supported each other, encouraged each other. Or whether there was a little part of me that thought, if I have a seizure here noone will care or judge and everyone will know what to do.
One of the consultants had an interesting piece of research which suggested that while quality of life was normal in those with complete seizure control, the level of quality of life in other with epilepsy didn't vary that much between people having the occasional seizure or those having them daily... I guess the thing is epilepsy is unpredictable and that means that it is always a worry, however small and I think maybe I worry about having a seizure 'now' more than I might let on.
Spending time with other people who face the same problems, side effects of drugs and the epilepsy itself, it got me thinking. I have always worried about my memory but everyone tells me that there's nothing wrong with my memory and in most areas I would agree.
At uni I was sent to the dene of students to get some help with my memory as my lecturers saw it as a problem. My main stratergy is I have a book, especially at work which says the things that I need to do. It is more for confidence, basically by writing things in the book and then not having to look at it and still remembering it builds confidence but at the same time everything is written there if you need it to reduce anxiety.
But one thing I am aweful at (and I mean aweful) is remembering people's names... people say I am too... and maybe it is just normal and maybe it was as bad before I had epilepsy but I just don't remember it being such a problem... at the weekend (because people didn't mind me asking them over and over) I had to ask people there names upto 4 times to remember them... and it gets me really anxious which then doesn't help. So I have decided I will write people's names down as I met them, I will have a book and I will then be able to look back and as I said before I maybe able to remember without looking at the book but if I can't it is there.
So the weekend made me reflect on what my epilepsy might be impacting on, to accept that. But the most important part of the weekend is the friends I have 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 of imagined a better way to spend it. Thank you everyone :)
So as I said, over the next few posts (over the next few days) I will talk about some of the things covered during the weekend, including:
- pregnancy and parenting workshops
- anxiety and depression in epilepsy
- bone health in epilepsy
- memory (hopefully)
- mindfulness (hopefully)