The Myth Of Epilepsy

The Myth Of Epilepsy
My Story


Hi my name is Paul, I have for over 11 years suffered from epilepsy,suffered bad experiences and seen what living with it is like, I am a member of many internet forums on health and epilepsy such as the Crikey forums and Epilepsy action forums,I will leave links after I have finished my story, as I only know 1 person in life who actually suffers from epilepsy so the forums have been giant help.


Many people throughout the world believe Epilepsy is a disease, a spreadable disease what make them different and makes them collapse and have fits shaking on the floor. As I have always said people are sheep and believe anything their told. I suffer with epilepsy, I have done for 11 years,when I turned 15 years old. I was never a people person, hated confrontation and wasn't too social either. That of course meant I was slow when it came to girls and social and social side didn't pick up till the beginning of college which was straight after school. Anyway back to the age of 15, I was very tall for age but also had a big build too but it suited me being tall and big,of course being tall and skinny would have been good too. My parents had always taken us on holiday to the coast somewhere,or to Wales or somewhere in England except the year I was 15. The summer holidays came and my parents surprised my me,my brother and my sister by telling us they had booked a week holiday to Greece, it was to a little island called Kos.
I had never flown anywhere or ever been in a plane so I was extremely excited but also very nervous as it was a plane and you heard things like planes can crash, of course, there weren't many plane crashes then like there have been since 2000. Of course like many flights ours was delayed 1 day so we got to stay in a 5 star hotel for the night and until our flight was due, it was brilliant, everything was free,paid for by the company,so we watched films on box office and ate like kings. The next morning we were eating a sort of self service, breakfast buffet, help your self style so we were all filling up on that, until we got the call to get to the gate as our flight would be in very soon. We arrived at the gate and got on the plane pretty quickly, this was so cool, I was going to be flying thousands of feet in the air at such speeds, I love flying, and have flown all over the world since too. The flight was pretty good with free drinks coming around and the flight wasn't too long either, we got an announcement from the pilot saying “Ladies and gentlemen, we will be landing very shortly please put on your seat belts”. After the announcement and we had put our belts on, we waited 10 minutes and landed, which was kind of bumpy but damn exciting still. Exiting the plane was so weird,they opened the doors and it felt warmer, not much warmer but you could feel a slight difference in the temperature straight away. We all then started walking down the gangway towards the exit,as soon as I stepped outside the door a bloody heatwave hit me and I felt a little sick for a minute but it soon passed. We all walked down the stairs and got on the coach and drove towards the terminal, at quite fast speeds. The airport was kind of scary as there were soldiers everywhere with guns and in Manchester airport there were then very few armed police unlike now, we then proceeded to the luggage area and picked up our bags and got on the coach which was waiting for a group of us. It took us an hour to get to the holiday flats. I was surprised and excited to see a swimming pool, I wasn't a very good swimmer but could do the basics and to be honest I wanted to just wanted to mess around with my brother and go under the water with them cheap goggles and swimming kits you can get. Thats what we did for the majority of the time. Now what you have to think is I this was a shared pool between a hotel and our flats,it was basically in the middle of them both. The public toilets were in the hotel near the reception, but the floor was marble which wasn't very health and safety conscious. Anyway so we were playing in the pool for ages and would run out and across to the hotel to the toilets risking slipping on the marble floor which could do harm. We went all over the place, visiting areas and going to the boiling hot beaches but at the end of the day we spent a lot of time at the pool. A week had just about passed and on the last day we were going to look around and go to the pool until our very late flight,which I think was at 3am. Anyway it was mid afternoon and boiling hot and we were in the pool and I decided to go to the toilet,so my brother came with me too,we both sprinted there and after I had finished we started to sprint back and the inevitable happened, I slipped and smacked the back of my head on the marble floor. It didn't knock me out but it bloody knocked me for six, it really did I mean I have never had the wind knocked out of me like that before. It was a very painful fall but my brother walked me back to my parents, I know it was my own fault, but I was a teenager,excited and running and playing with my brother,I suppose it was the hotels main fault though as they know many people use the toilets and the floor was constantly wet and was extremely dangerous. The end of the day came and we had to leave the holiday apartments or flats or whatever you call them and had to wait in reception, then out coach was late. The coach finally arrived and I and many people got a little sleep, we arrived at the airport, put our bags on the weight thing and walked through to the gate and our plane was early and we were allowed on. This was great news,it meant we could get on and sleep more. This is were it all started, I remember walking through the planes door and started walking up the middle of the plane then had a tingle,a sort of funny feeling. The next thing I remember is waking up on the floor surrounded by paramedics and crew and my parents. They took me away from the plane and I went to the medical area for an hour. The doctor there did some basic tests and said Id suffered a mild Tonic–clonic seizure, which is formally known as a grand-mal seizure. In this seizure my entire body had gone as stiff as a board, I lost complete consciousness. Amazingly the pilot waited for me, and waited for nearly 2 hours, and the people on board were just happy I was ok. I slept all the flight back and nearly a full day when we returned home. I had a doctors appointment booked for 2 days later and I had to go see a neurologist at the hospital, he thought it was a bad epileptic fit but wanted me to go for scans and tests, hearing this was the most terrifying thing ever as like many I had heard of epilepsy and was afraid it would ruin my life. I got to see my special neurologist a week later. I had so many tests including a flashing lights one which had no effect on me so I didn't have light sensitive epilepsy and the last test I had done was a brain scan. This was scary, scanning my brain,they could have found anything taking in to account of my fall and tot the bang to the back of my head. I got the results through a month later. They found nothing, I then was made to have blood test and some other tests and they found nothing. I think it was about a month later, I hadn't had any more seizures or anything and was sat watching the television and I suddenly blacked out and woke up a minute later. This time my mum had told me it was a full body shaking seizure and I had stopped breathing for a time and my lips had gone blue. This really terrified all of us, I mean if I have a seizure and there is none about I could really hurt myself or even worse could stop breathing and die. I was beyond upset and told I could see a councillor, not really going to help. I had another appointment booked for the specialist and he said you can inherit epilepsy but the only person in my family with it was my mums cousin of a cousin and it was very unlikely. They were other theories and ideas, like when your I the womb and the cord can get wrapped around your neck, that happened to me for a few seconds when being born, but consequences of this can cause brain damage. This was to me a desperate idea, we have mentioned the fall in Greece and he also said that could have been a trigger to start me off epileptic. I had many more seizure over the next few years, and I was on many different types of medication including Lamictal, some epileptic sufferers will know this or use this. That medication scared everyone as it changed my personality. I got very nasty and put so much weight on, but after a few years on it I had a seizure and the specialist said I should try some new medication. It was called Epilim, While taking that medication my personality changed back, I was back to my old self and was no longer nasty. With the medication my seizures slowed right down and I hardly had any. Of course when I did have a seizure my dosage was upped but it had to be to stop the seizures. Over the years has been bloody hard though, at first though it was so hard and I couldn't tell any of my friends, I was embarrassed to what they would think and say. I know now a very silly thing but I was young and scared and felt so alone. I would go to the doctors and see what help was available,they said in the hospital there were people I could talk to. I tried it I went to them and went to see what they had to say but shockingly it was rubbish and useless, it was a person I think working for a charity group who had nothing to do with any epilepsy organisation. She had a leaflet and told me the effects and what will change in life, now I was suppose to be going for help and support,instead I had a useless woman telling me what jobs I couldnt do after school and college and advising me on what not to do in college as I wouldnt be allowed to do the jobs afterwards. That was her way of helping me but she was putting me down and I was suffering from depression as it was and she made me much worse. She then mentioned my weight, I was over and she said I would never lose the weight from my medication as its a side effect and I would have to get used to it. At this point I had never felt so alone. I had just started college, didn't know what to do but thankfully my mum had pushed me in to health and social care and I started in 2000. I had mostly girls on the course which was so helpful as I wasn't social in school and then the epilepsy had knocked the rest of what confidence I had left out of me. I made many friends in college,started a social life and everything was going well till a massive seizure during class, after I felt ashamed,embarrassed and had lost confidence again. The next time I came in we had a class on epilepsy to ease the class's minds but it was never the same afterwards and I dropped out of the second year. I then got a part time job in a cinema, I thought working would help, but it didn't,I still felt alone even getting a girlfriend and a bit of a social life, then on a trip to the doctors he gave me a leaflet called Epilepsy action. It was a website about epilepsy,explaining what it was what some causes can be,what can trigger it, there were forums with hundreds of people who I started to talk to on a daily basis,then I found crikey health forums were there were people on there who suffered too. I started to feel comfortable, I had found people in the same boat as me and I could talk my mind and problems knowing some people had similar problems. I was confident and quit working and started another two year college course in IT. It went very well, I did have some seizures but apart from family I had people to talk to about it. I then had family visit from New Zealand and offered to let me stay there for the year after after I finished college. I finished college,we had saved enough for my visa and tickets and I went. I had the time of my life,no seizures,lost so much weight,worked,got a social life and everything was going fantastically, but I decided to go to university so returned home. I am now doing an honours course in computer science. I will be a qualified programmer in a few years, I don't drive as I never learnt but but can,my epilepsy doesn't stop me, As for work when I finish I will hopefully get a very high paid job, or even work for someone like BAE or the military, plenty to pick from or maybe a games company. It makes me feel so good as some of the shit i've taken over the years, comments i've been called by people, also getting told I wouldn't be allowed to do some college courses, I mean now I come to think about it that must be classed as a type of discrimination. I suppose I could have taken things like that further but its too late

To all of the people reading this, Epilepsy isn't a disease, its a condition, you cannot catch it like the common cold. Admittedly if you have epilepsy you can be limited to doing thing, but it depends on the epilepsy, there are so many types of seizures, I mean there are seizure so much worse than mine, some people have then constantly and have to wear protective head gear, then there are seizures where it looks like someone is daydreaming for a few seconds, there are seizures while people sleep, grand- mal seizures like mine and so many others. Many types of epilepsy can be so well controlled and many epilepsy sufferers can do most jobs. When it comes to front line jobs like the army,fire brigade and driving police cars and so on they have to wait standard of I think 10 years. It is understandable but I wouldn't want to join the front line army and die for oil and the forces are not my sort of thing. I'm an animator and hopefully after I graduate university a professional programmer. There are so many highly skilled people out there who are epileptic, but many do not mention it as I don't really know, it still seems to be a taboo subject. I do understand as it took me years to admit it to myself i am epileptic and tell friends. People have in theatres tried to make fun of epileptics, In Bradford theatres they classed it as art and tried to cause himself to have a seizure on stage, which is so wrong I mean you wouldn't try and put yourself in to a diabetic coma if you were diabetic. I think medical conditions like this should be talked about in schools, as like I said it is still a taboo subject. If you find out you are epileptic and you are young or a teenager it can mess up your entire life. On television shows epilepsy and some other conditions have been shown which does help a lot but more people need to know about epilepsy and understand it. I mean if you were in a supermarket doing your shopping and someone in front of you fell on the floor and had a seizure what would you do??? Many would try hold them,many would put their fist in their mouths to stop them choking. No one I don't think really knows, the correct thing would either leave them or afterwards make them comfortable and get an ambulance. Anyway enough said, I could talk for 100 pages but it would be the same thing. I hope reading this will open your minds a bit. Thanks for reading this.
Oh yeh, yes I do drink booze still, it doesn't effect my social life my epilepsy medication.