It's been a rather eventful couple of weeks here. I posted on Facebook that I made it to school without my wheelchair one day. Oh how the universe laughed at me. It's all been downhill ever since. My seizures have been terrible the past two weeks. My shouting has progressed from cocks to ducks. Well not duck but you get the idea. James is shocked yet slightly excited by my swearing. We're even getting a few cuckoos in there, could be worse I suppose.
I had the mother of all seizures. The full blown body shaking, eyes rolling, everything you imagine epilepsy to be. Being me though I didn't just have one, I had several all in a row. We weren't counting but we estimated 10-15 seizures with about 30 seconds in between each one. Emily said I looked like I was dancing and James said I looked like I was possessed! So we took a trip to Stoke A&E which was a lovely evening out. I highly recommend it. Everyone calls you duck so I can get away with my swearing there. After a four hour wait I was pretty much back to normal so I got to come home. I've started new medication now so hopefully that will be the start of better times to come. The transition is hard and I think the reason for the increased seizures.
It's really shaken me up physically and mentally. Physically it felt like I'd been on a spin cycle in a washing machine and my brain was rattling around. Mentally I'm scared it will happen again. It wasn't a pleasant experience and not one I'd want outside of the house. For now I'm taking it very easy and getting my strength back. They took ten vials of blood from me this morning at hospital which I think is a personal record!
This week I became very bad Monday evening and couldn't get my words out. The only word I could say was cuckoo! I go up a level on my tablets each Monday and it really affected me. I was like a drunk octopus and couldn't speak except nonsense. It did sound a little like I'd made my own language up! This happened on Tuesday too. I had my lovely friend Laura round who was helping me walk. As I started to fall she groped me by accident! She says she was just trying to catch me but we both know the truth don't we Laura??
Laura's mum has got me a new chair to whizz about the house on. It's great and I can hang on to it when I'm falling although sometimes I fall off it. I have been really bad this week and have had several incidents where people have had to come and rescue me. I'm covered in bruises. We also enjoy playing charades when I can't speak. James is great at it but Chris is rubbish!!
Next week I'm going down to London to discuss the problems we face with Epilepsy with the Epilepsy Society in partnership with River Island. There will be ten of us there and the campaign is called Everyone Knows Someone. There is a survey to complete for anyone you know with epilepsy and we will discuss the results next week. Please help us to share.
For more information about epilepsy, go to www.epilepsysociety.org.uk
If you would like to talk to someone about epilepsy, call their confidential helpline for information and emotional support.
Epilepsy Society Helpline 01494 601 400 Mon and Tues 9am-4.30pm, Wed 9am-7.30pm