Dancing Queen V’s Karate Kid

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sorry couldn’t resist the post title! 

It seemed that the next few years flew by.  school life was back on track and social life too. Yes there were restrictions but I still had fun and my childhood was pretty good really! Family life was difficult at times but who’s wasn’t right !So I went throughout the next two years pretty steadily with regular hospital check ups and changes to medication level as I grew. When I was 9  I was taken ill again. It had happened over a few weeks but I ended up again in hospital but this time not for too long.I had appointments to go back for tests which i did. The tests were quite nasty and now at age 9 i had learnt that hospital were not good nice places to be as i always came out with holes in me somewhere and hurting for the things they did. I did always had some soft disney toy or other that was great for distraction. I didn’t care that most kids thought 9 was too old for toys such as disney and soft bears… i embraced the lot disney and sparkles all the way. There were lots of tests that they done on this round of my MOT.  The one i remember vividy was one that provoked my seizures. It was an E.E.G but they made me stop all my medication. Then when i was all hooked up they flashed a light in my eyes…. i can’t remember anything beyond that point !Becoming older I understood more and more which was not necessarily a good thing! When the results of the tests came back it was revealed that my epilepsy was generalised but originated from the temporal lobe. There were lots of medication available at that point so i was put on some different pills and life carried on.After 4 weeks i was the liveliest i’d been in years… we didn’t realise it at the time but the previous medications had obviously made me more tired than i should have been. I was happy real happy. I had always loved dancing and i’d joined the local dance school at 6, but i was now dancing better and enjoying it more. Age 10 i also joined the local karate class. Here i met lots of new friends and thrived at being a little karate kid. I zoomed through the first grades and was taken to all the local competitions. age 11 i went to regionals and won! the next 6 months were run up for the semi finals. I loved the lot and had a fab day despite getting up at 4 am! i came 2nd in the combat sparing and 1st in kata. Mum and my instructor could not have been happier as we were not expecting it after getting up so early and the long journey ! My next appointment at the hospital i proudly put on dr terri’s desk my trophy and medal with a photo of me and the rest of the team. Dr terri replaced the old regional phot with the new semi final photo and was also thrilled. No medication change was needed and once again life continued on a upward roller coaster.I was full throttle in with my karate and was loving every minute of it… I was going to competitions every week and even went to a big competition in London, this one didn’t go too well as i was 3 times smaller than my opponent and ended up in the ambulance corner where i got patched up ready to do my next competition entry: kata. Despite the cuts and bruises from the fighting i came 3rd in the kata class so it was worth going especially as it was such a huge competition.My love at the moment was dancing. id only recently started competing but was doing ok. In fact I had a dancing partner, he was 2 years older than me but we were a good match. We both done really well with our routine and thrived in rock and roll. Competed in many competitions School was also great. Apart from seizures when I was poorly with cold, flu or had an infection. Anyway school went well and from 5th year on I had no more seizures… the new medication had worked ! I was delighted as were my family. I got to do things I hadn’t in a while and I was slowly weaned off the tablets that I had been taking for over 6 years!. Life was great, and I going off with my friends on our own…I was getting a bit of independence. A happy ending? 



Life after diagnosis

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And yes don’t worry there is a life after diagnosis…. it’s just a little more complicated than before! but we fight it disney style : with positivity and sparkles all the way!So for the next couple of weeks life continued. I went to school and all was ok although after mum told the school I was banned from using the PE equipment as I could fall off!. My mum, had to learn how to use rectal diazepam which would get me out of a seizure if it didn’t happen on its own. I was too young to know or remember too much of the details. my life’s roller coaster was going at full speed and downwards.Life again continued on its merry way and apart from a few seizures I didn’t take much notice. As a young child you take things in your stride and grow to live with things. I wasn’t to know this wasn’t normal!. My mum on the other hand had to deal with the stigma of having a child with epilepsy. I now know after mum telling me that some of the parents told their children not to go near me because I had epilepsy!!! If any of those parents are reading this blog now…. shame on you but thank you because you are some of the reason I am the strong person i am today and am campaigning form more awareness. 
At the age of 7 I moved.  This was great fun as we actually moved on 24th November (my birthday) not only was it my birthday but it was snowing too! great fun for me but not so for the move.I was on a bit of a buzz as Topper and I (topper being out toy poodle)  were staying with nan and grandad who had made me a cake and brought me the biggest polly pocket world i’d seen… I was loving it.  I had to change schools and life was better. We were nearer to the rest of the family and I was going to the same school as my mum and cousins had been to. I met a new cousin while at school that i didn’t even know about so life was great. Then things changed Although i loved school, I was worried what the people, and my new friends would do if the seizures (fits as i called them) reared their ugly head. I would had to face another set of kids with the same kinda questions as the last. It didnt happen and I ended loving my new school, friends and life much better than my old school.


The Beginning

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I first had a seizure aged 4. I had severe whooping cough, where I stopped breathing for over two minutes. My mum tells me I was held out the top floor window of the house and swung from side to side to make me catch my breath. As it was a cold Octobers evening, im glad to say…. It worked!!!About a week after this and in my first year of primary school and I was sitting on the worktop with my mum helping to make my sandwiches for my lunch box. I suddenly felt strange and funny. i said to my mum “mummy I feel funny”  it was an aura. The pins and needles, the thick feelings the deja-vu. (for those of you with epilepsy you will know this well).The next think I knew I was on the floor. My mum had just witnessed my first grand-mall or as they are now called Generalised seizure. I woke finding myself with her by my side cuddling me. I had no recollection of what had happened, but felt dreadful, tired and sleepy. (I cant remember being scared and mum has told me I took it in my stride- being as stroppy as ever and not wanting to rest!…. that hasnt changed an awful lot now, as I still get frustrated at times!) Anyway I missed some days of school due to my fisrt seizure, I was taken to the dr where I was given the all clear and mum was told to come back if any more problems. It didn’t take long as by the next week I was back in the DR’s room after having 3 more fits. I was sent to the Hospital and the roller coaster began.

I was a bit scared going to hospital. My first hospital visit i met the dr, (dr stefani).  I couldn’t say his name and therefore he let me call him Terri which sticks till this day if I ever pass him by. He quickly examined me including guessing what I had for breakfast! CORRECTLEY (which astonishes me till this day!)  and then sent me for some tests including a EEG, blood tests, X-ray and ECG. A complete MOT!
The tests seemed a bit big and strange but Terri wanted them all done that day, so off we were fore a trip round the hospital. First to Blood clinic, which with a bribe with a chocolate bar and hug from my bear was done. Then X-ray, ECG and then EEG (which I was going to get to know very well over the years). 
After a couple of weeks I had an appointment to go back for the results. During this time I had a total of 8 seizures and my life was going changing. My school were not letting me join in games and mum was obviously worried. 
On the day of my results we went back to the hospital, Terri called me Jamima puddle duck from down the corridor he knew I liked the Jamima puddle duck story! He was so funny.. Mum and I walked into the office and sat  down. 
I cant remember what was said exactly but we were told I had epilepsy. We were told what I could and couldn’t do, and precautions to take. I understood some things, as terri also explained it to me so I could understand. 
That night at home I had to take some medication, tegretol (carbamazipine) they looked like boring sweets.  Mum told me what they were and I had to take two. I did. 
My first ever EEG Age 4.


Welcome, & my decision to go public !

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This Blog is about my life and ride with Epilepsy. Through my own personal journey with epilepsy I want to help other people and let them know they are not alone. So many times i have felt alone…. even in a crowded room, vulnerable… never knowing when a seizure will strike.Ive been writing long before blogs were invented but it is only recently I discovered the impact that a web journal or “blog”  can have on the areas i cover in my writing. Especially on subjects close to my heart that need help to be published and awareness raised. I entered the world of “internet and epilepsy awareness” about a year ago and discovered truly that I wasnt alone. There are other people out there thinking the same as me. Struggling like me. This writing has previosuley only been my personal Journal, however through gaining confidence from the people i’ve met online and with the urge to raise more and much needed awareness of the condition I want to make my words public. This includes the non-edited raw truth about my life.I thought one day i would edit it and make it all nice and fluffy as i call it… but why? life isn’t like that and my aim is to show the truth out there so here we are. I started blogging on another site a few years ago but left all entries private… since deciding to “go public” I decided to move to blogger as they seem to have more features which I like…. so here it goes. (please bear with me while i move my blog over as this may take some time) Through going public I hope I will be able to raise awareness but also raise money in the aid of research for more treatments of the condition. so far this year my total is £720. Please give me feedback on my words and donate to my just giving page if you are able.


My experience with epilepsy