As i got near the steps i felt ill. I couldn’t describe the feeling but i didn’t feel good. I took a step down the stage steps to join my tutor group in the ranks and it all went blank.
Im a teenager… this can’t happen to me I’m invincible (well ok not quite but we all think we are at that age!)
In two days my life had gone from exciting, fun filled and independent to crazy, end of world (in teenage eyes), embarrassing and not wanting to go to school which I loved and normally craved. I was back on the roller coaster of epilepsy.
I loved school. there was no other word for it. I would stay to clubs, do extra homework. I was in science club, tennis club, languages club and history club. Whatever knowledge that school had i couldn’t wait to soak it up. The science teacher brought in work from the years above so i could do it when i finished our programmed work. My homework was pages instead of paragraphs and i even got told by the history teacher that it wasn’t necessary…. yet my only reply was i know but i enjoy it! so i was the class Boffin and i didn’t care.
For the first time in my school life I was able to enjoy school and catch up on learning which I found i loved as i didn’t miss a single day of school due to seizures.
My attendance was 100% for year 7,8 and 9 and my merits were always rewarded at the presentation evening. Life was fab as far as me went.
Family was difficult at times. My father and I never have got on since well… ever to be honest. There are many stories I could tell about my younger years and the “jealousy” “childish” behaviour my father showed towards me however to a certain extent I do have to edit the “family” part of the blog… because It is family stuff. Maybe one day i’ll be brave enough to fill in the gaps! for now I will say this… things were difficult at times. One story I can tell because, well, it was pretty public for me at the time was My prize presentation in year 8. I had just been awarded with 100% attendance, merit certificate, a science award and the history cup prize. I wanted to go back to one of the other halls where all my friends were with their parents and chat like you do. I went back while mum and dad were working their way there through another door. I didn’t know at the time but my dad had already had some “drink” and he and mum were having a bit of words for some reason that i still dont know. Consequently by the time we all met up in the other hall and there was wine and juice available there too my father ended up having a huge row at myself and mum which included drink and a few other matters. there I was in the middle of the hall making my way back across from talking to my friend and getting a juice drink when i could feel everybody watching my family un-fold in front of my very eyes! its not something I wanted to repeat. Therefore on future prize evenings of which there were 3 I didn’t let dad be present to them, and if there is anything that I want to go really well up to this day I use the same method of him not being present. Its really sad and I do feel I am missing out when I see other girls with their fathers of whom they are proud of and visa vera but that is life. My mum is more than enough to make up for the lack of father figure!
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?
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.
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.
|My first ever EEG Age 4.|
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.