Friday, 10 January 2014

Yes I wet the bed!

Yes I wet the bed!
So I’m going to continue by writing about another seizure of mine, my second big fit. But firstly I would also like to acknowledge that there are various forms of epilepsy and in the grand scheme of things I’m mildly touched by it! One form of Epilepsy is ‘Petit Mal’, also known as Absences, which usually last hmmm...about 15 seconds I would say. In its prime I suffered probably about ten or more in a day, although at the time I would almost certainly deny it, as it was (well to me anyway) embarrassing. It’s kind of like day dreaming and more often than not looks like it too. You kind of phase out for a couple of seconds, even minutes’. You could be mid flow in conversation and then BAM! You just go blank. I hate them. Only because they make me look like an utter idiot; as sometimes when I snap back out of one I say random words. I remember once saying the word ‘Dog’ mid conversation. I mean I’ve always been slightly odd, but not odd enough to throw random words into the mix. I somehow tried to fit (no pun intended) it into the conversation to avoid embarrassment. I used to hate it when family members would say ‘you just had an abscense’ (yes thanks for that I’m fully aware no need to point it out!) I would strongly deny it and say I was daydreaming, maybe perhaps defending myself a little too much. Fortunately now I have got them more under control, or have learnt to talk my way out of them better!

 I know other individuals, children (shout out to the inspirational children at New hope) and close friends (cough cough Lauren) that suffer with these daily, but never complain. They just get on with it. Amazing. It still amazes me how people with severe epilepsy or even debilitating epilepsy or whatever condition they may have epilepsy or not, never seem to be caught moaning, never let it get them down or at least try not let it affect any one around them. So really I can’t complain. Hats off to you.

So let’s continue the 2nd big fit...which I can recall, was when I was happily sitting in my bed with a bowl of weetabix, I think I must have put too much milk in because they were extremely soggy. Mom tells me she had a gut feeling that morning once she left my room something wasn’t right and she needed to come up again. Good old mom, she was right. My arch enemy Epilepsy had struck again. The cunning little tyke. Again no warning, no signs, nada. My weetabix had managed to go up the wall in a phenomenal fashion; this is why I think I must have gone OTT with the milk. And to top off this terrific morning, I had wet the bed. That’s right folks, you heard it here first I had wet the bed. Not only this, oh no there is more. The night before I had been surrounded by children who were riddled with head lice. So before I went to bed I had put that horrible stinking head lice stuff on my head (you know the stuff girls, if you don’t you’re lying!) as a precaution. So not only did I stink of my own wee (I’m going to say wee to be polite) I also had crazy stinky lady hair and was covered in weetabix. WINNING! But in all seriousness I trying to make it light hearted otherwise you can dwell on these embarrassing moments too much. As a teenager this is a mortifying experience. However your body looses all control (more or less) over its functions when going into a grand mal ‘big’ seizure. There is so much the body is trying to contend with, keeping control of your bladder is the least of its problems when it’s trying to get you back up and running. So try not to dwell on it too much. Yea it’s embarrassing but you can’t control it, it’s one of the only times in your teenage/grown up life, where this is going to be acceptable!  
Again I remember feeling scared and unsure what was going on. I also remember crying because this was the first time it hit home it was epilepsy as it was my second fit, but I still couldn’t understand what was going on, what mom was saying or why I had to change my clothes, when In my head I wasn’t planning on going anywhere. I remember hearing two men, who turned out to be paramedics, voices outside my room urging me to get changed. I was changing into clothes Mum had quickly found to go in the Ambulance to hospital in. She picked out some 3 quarter length trackies and a sports top, not even a brand, actually it could of been Kappa....always keep it classy. I don’t know where and earth she acquired these clothes from but the image suited the smell perfectly. Thanks mum!

The Paramedics were trying to hurry me up. At the time I thought they were being mean, two total strangers asking me to get changed, who do they think they are? In fact they were doing the total opposite, they were trying to hurry me incase I had another fit. (Fits often come in clusters and happen in concession to one another, I’ve come to find in my situation). I’ve never found it so hard to put on clothes in my life. I’ve never been good at the gym but it felt as though I was lifting weights both on my arms and legs or the day after a big training session (I imagine!) ; whilst trying to cope with my brain once again trying to break out of my body; whilst I try and sort the puzzle out of what the hell is actually going on!
In the ambulance I talked absolute gobldey gook, talking absolute jibberish. This often happens to epileptics as they are trying to make sense of things and the brain is more or less rebooting and re-wiring itself. I also began to become quite aggressive. Imagine if you came out of a deep sleep and a group of strangers were hovering over you, poking you with needles and trying to put something on your face. Your first instinct would be to fight back wouldn’t it? With no feeling what so ever I ripped the IV out of my hand like the hulk and started to be quite rude. Well not quite, I did. It soon passed and I started apologising for everything, the bed wetting, the hair, the clothes, and the fit. But the paramedics had seen it all before. They must have smelt it all before too! They were kind and reassuring and didn’t leave my side until they felt I was out of harm’s way. Unfortunately this was quite a big fit and again required me to stay in hospital, with many fits coming quickly after it. Again the hospital staff were on hand to help day and night!
A few days after the fit I found it really difficult to walk and was exhausted, spending most of my time sleeping. It felt like I was wearing one of those old fashioned deep sea diving suits. Friends and family visited me at home to keep me from dying of boredom. My best friend Laura (again a long suffering friend of mine) did my make up and hair so I looked more myself... more ‘normal’.  

I guess this section of my story is to say thanks to everyone who helps. The hospital staff, best friends and family. These are the most important people. They pick you up when your down and they also live with epilepsy but in a different way, they make me laugh make me smile and they couldn’t actually care less about my epilepsy which is great! Aimee and the epilepsy are two separate entities.  Also to appreciate the epileptic individuals who suffer daily but never complain....and hopefully don’t smell of wee!


:)

Young Epilepsy Champion Awards

Since my last post

Since my last blog I have had such lovely feedback and been in touch with various Epilepsy Charities which do great work everyday for people like myself. These charities vary from support, information, research and more and do an amazing job. They are there to educate others and give people the crucial support they may need. 
I would like to thank a few of these: Epilepsy Society, Young Epilepsy, Epilepsy Research to name a few. 
Have a look at their sites if you have the chance. One I will be talking about today is Young Epilepsy. 


I've know who I'm voting for....do you?
So I have found out about these great awards called the Young Epilepsy Champion Awards. This outstanding charity, 'Young Epilepsy' has done huge amounts of work in the support and research of Epilepsy; and now they are looking for those day to day champions which do the same. Here's a little bit about it: 

Young Epilepsy is the national charity working exclusively on behalf of children and young people with epilepsy. With over 100 years of experience we are a leading provider of specialist health and education services. The charity offers support, information, training for health, social care and education professionals and campaigns to improve access to, and quality of, health and education services.(I don't think these superheros sleep!)
Young Epilepsy are looking for charity nominations for this years 'Young Epilepsy Champion Awards'. Pretty cool huh? 
Here is a little bit more background info:


These awards recognise the outstanding contribution individuals, groups and organisations across the UK make towards raising awareness and understanding of epilepsy, and improving the lives of children and young people living with the condition. They also celebrate individuals who overcome obstacles and create opportunities to use their story to inspire others.
Peter Andre, Singer, TV Personality and Young Epilepsy Champions Award winner, said, “The Young Epilepsy Champions Awards recognise the outstanding contribution of individuals, groups and professionals make towards improving the lives of young people with epilepsy. Our New York Coffee Club won in 2013, this year it could be you.
“Just because you have the condition, doesn’t mean you can’t achieve your mission. Everyone living with epilepsy is supported by at least one Champion; it may be a family member, a nurse, a doctor, a teacher or a business and they deserve our recognition and thanks, so nominate them today.”
On average one child at every primary school and five at every secondary school in the UK will have been diagnosed with epilepsy. It is the most common serious neurological condition in childhood affecting 112,000 people aged 25 and under in the UK.
Nominating someone for a Young Epilepsy Champion Award is easy and can be done online at youngepilepsy.org.uk/champions-awards. All nominations must be received by midnight, 26 January, 2014 and the ceremony will take place on 26 March 2013 at City Hall in London.
For further information, please visit youngepilepsy.org.uk or follow Young Epilepsy on Twitter @Youngepilepsy, Facebook/YoungEpilepsy or Youtube/YoungEpilepsy.


There are an endless amount of people who have helped me through the years to deal and cope with my epilepsy. It's time to give them a voice. These are the unsung heroes that go unnoticed who take it in their stride, who don't have the limelight shone on them, yet totally deserve it. My hero is my Epilepsy Nurse I had when I was a lot younger. Sharon Dawe. She was more than a nurse she was a friend. At the time she was a Nurse within the children's section. She often sat in on my consultations and held my hand when I was upset, or explained the bits I didn't quite understand. She went on to specialize in Epilepsy and now is a specialist in the field. She has helped endless amounts of people and is a pillar of stength. But too Sharon it's all a job. Well it isn't. You don't have to go above and beyond but she chooses too.

I will be voting...will you? (in big brother voice)

Thursday, 2 January 2014

Photo Fitty

The Photo Fitty
I would like to start by saying the title is a mere play on words, I do not by any means think I’m what you call a ‘fitty’ however I am a photo fitty, yep a massive photo fitty. That is my easy version of the condition Photosensitive Epilepsy, a warped sense of humour which makes the condition Epilepsy a bit more bearable. So if you stumble across this blog whilst trying to look up something a bit raunchy I can only apologise! (I hope you continue your search and find whatever you are looking for).
I am writing this blog in the hope it will cut out the mumbo jumbo that epileptics can be bombarded by when they are first diagnosed, help people to look on the brighter side to this pain in the jackzee condition with awkward situations Epilepsy has landed me in and to educate others to what Epilepsy actually is.

Warning this programme contains flashing lights
We have all seen this at one point or another before a programme right? Well that’s for ‘us’ Epileptics, a pre-warning if you like, for us to be aware that there may be a series of lights that can cause seizures, fits or whatever you want to call them.  To be honest it gets on my nerves a little bit. Fair enough it needs to be done for those that suffer from Photosensitive Epilepsy like me; but I personally feel that due to this and from my own experiences it makes everyone associate Epilepsy with flashing lights. NU-UH, INCORRECT, WRONG! In fact there is a whole spectrum of types of Epilepsy, photosensitive is just one most people are familiar with, there are also many ‘triggers’ to Epilepsy: stress lack of sleep, alcohol to name just a few; Epilepsy can start at any age too. My ‘Epilepsy Adventure’ started at the age of around 13. As you can imagine being a geeky, self-conscious, self absorbed, stroppy teenager it was the end of the world!

CBBC and me
Like any teenager on a Saturday morning, I was slobbing out on the sofa in my pjs watching the CBBC channel. Maybe SMTV: Live wasn’t on that day, I’m not sure but CBBC was the channel of choice for me and my older sister Charlotte. (Charlotte a person with a pivotal role in this story, a great sister but not a great person to have in a crisis!). So there we were pigging out on the sofa watching ‘Cavegirl’...a terrible terrible programme which I used to blame for a long time my Epilepsy on, stupid I know, but hey ho I was 13. In this programme a sequence of flashing photos came on consecutively...little did I know at the time this would cause me to have a seizure or ‘fit’ as some call it. I didn’t feel anything, no pain, nothing and it struck with no warning. In fact I don’t recall a thing, not one iota. All I know is what I have been told.  
Me being the annoying little sister I was, or should I say still am; Charlotte presumed I was being my normal weird self and trying to make her laugh. I let out a loud screeching/roaring sound is what I can only describe it as (something which apparently I do before any fit I have and still to this day scares the living daylight out of my poor long suffering sister!) I then went into what I now know as a ‘Tonic Clonic Seizure’ or big fit as my Mom and Dad call it. I fell unconscious and started to fit violently, the dramatic eyes rolling back the works...I’ve always been a bit of a drama queen. I think it was at this point my sister knew I wasn’t joking and began to panic.
She shouted to Mom who was in the shower. From what I know Mom came out of the shower actually a bit annoyed and so she should, being called out of her morning shower to deal with her teenage daughters! I think she probably thought it was another play fight that hand gotten a little out of hand, not unusual for me and my sister. Again the idea that this was just another day soon vanished. Charlotte quickly dialled for an ambulance, in the meantime I was still unconscious and oblivious to the drama that was unfolding. It was at this point Mom, for whatever reason felt the need to take the phone from Charlotte. Our phone was one of those old cord phones plugged into the wall and in Mom’s frenzy she took the phone from Charlotte and the phone became unplugged from the wall, disconnecting them from 999....nice one Mom, really took control there!
It wasn’t long before the Ambulance came and I was driven away to hospital. I started to regain consciousness, but all I can remember is being frightened. I had no idea where I was, what had happened and why all this fuss was needed. Everything seemed to be speeding up and I couldn’t keep up. My head felt like a bomb has just gone off. I can only describe the pain as if my brain is pushing on my skull, desperate to break out.  My entire body was aching and it was difficult to even raise my arm, it even hurt to raise my eyebrows to make any expression! Believe me its true when they say its zaps your energy just like running a marathon, I’ve done both and would pick a marathon over a fit anyday of the week. (I had to boast about my marathon somewhere!) Your whole body aches, you have a headache like no hangover or party from the night before can compare, time passes and you don’t know how it goes by so fast.
So that was my first fit! I wasn’t really worried; the hospital was alright, the nurses were kind and I had my Nintendo DS to keep me occupied. The doctors all thought it was a result of hormone changes in my body and after two days of being in hospital I was allowed to go home.

The Diagnosis
After a couple of weeks passed I was booked in to have an EEG (electroencephalogram) to monitor my brain activity. I was quite excited actually, it was for a short time anyway, nice to have so many people paying me attention, I’d never any tests before, sounds strange to be excited but it’s true. That soon changed when I stepped into the room where the EEG was going to take place. Now at 22 years of age I no longer find it scary. But I empathize with those who are having their first EEG scan. It is a scary and daunting process. A small room where wires are glued onto your head and connected to a computer, like a robot! A big light is placed right in front of your face. I sat in smack bang  infront of this big light. The room was dark and the lights began to flash, various patterns, colours and speeds, from various distances. It was still pretty scary for a 13 year old to sit through though, well anybody of any age really! It didn’t hurt, it fact it was annoying! Flash a torch into anyone’s eyes and it soon becomes annoying! All I could see was wiggly lines bouncing up and down on the computer screen, these wiggly lines were actually my Brainwaves; quite amazing when you think about it.
Being the geek I am once it was finished, I went back home washed my hair (trying my damndest to get this glue out) put my uniform on and went back to school.
Around 2 weeks later I had a consultation. ‘You have photosensitive epilepsy.’ My heart literally sunk, I could feel a lump in my throat and felt stupidly hot. Ive always been the clown in my family, but I could feel my eyes watering; trying not to blink to stop the inevitable tears rolling down my face.
I know this all sounds a bit doom and gloom, but I’m trying to be as honest as possible. I think when you’re first diagnosed you do feel you’re the only one and woe is me and you have every right to be. It’s a lot of information to digest; Epilepsy affects many aspects of someone’s life. One minute your fine next you have to deal with the title ‘Epileptic’ and the prospect of being on medication for the rest of your life. It’s only normal to feel like you have been kicked in the teeth.
All I can say is have the moment, that day that week. It will get better. You will learn to come to terms with it. Many people in this world are too quick to cling on to the negatives. But it’s true what they say, there is always someone worse off and always will be. So the only choice is to hold your head high and carry on. Yep I’m epileptic and always will be, annoying ? Sure. But why should that determine who I am. I’m Aimee, always have been always will be.


More blogs to follow