Tag Archives: life

The Beginning

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 !

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.