Dear Epilepsy | 31

Dear Epilepsy,

Today is the last day of this project/daily blog, whatever you want to call it, but unfortunately its not my last day with you. It is a daily battle, a daily balance between medication, avoiding triggers on top of GP appointments and after a years break consultant appointments. Its like we're on a see-saw, one of us is always higher than the other and yet we never seem to move, we're not in unison and we're not going anywhere, more importantly you're not going any more. The thing about being on a see-saw though is one person has to give up first, and you see Epilepsy, I don't quit, I don't give up I just keep fighting. So although this may be the end of this day/month/chapter it won't be the end of the battle until you leave, because I've told you, I will do anything to get you out of my life and break the stigma others face. I'm not scared of you Epilepsy, you won't make me give up on; fighting you, having fun and living my life. Yes I have you, but I won't ever let you have me.

Dear Epilepsy | 30

Dear Epilepsy,

Today I was told that because of you, I have to go back under a specialist. For 17 years I went through tests year after year, appointment after appointment just to try and manage you. Manage you, that's funny because you still insist on visiting, you still insist on pestering me and visiting although your not welcome. I don't want you in my life, your a never ending nightmare except how I know I'm not waking up, I'm fast asleep and your not leaving, but the thing is Epilepsy, everything must come to an end, even you and one day I will wake up from this nightmare and you'll be out of my life, hopefully.

Dear Epilepsy | 29

Dear Epilepsy,

In the morning I will be at the doctors, talking about the best wash to fight you, the best way to stop you and everything else you bring. You don't ever seem to give in and always attack when I am at my most vulnerable, you don't care where or when you visit. You takeover my brain and for a short while you are in complete control. That's another thing I hate, no matter how many times I think I've won you always seem to be another five steps ahead.

Dear Epilepsy | 28

Dear Epilepsy,

Everyone says they're willing to fight or support, but they aren't, when it comes down to it they don't know what its like to live with you. How not only you drain me but the medication I take in order to give me a fighting chance against you. They may see what I go through but until they've experienced it they will ever fully understand. They won't understand how hard it can be at times, most 18/19 year olds are driving or clubbing, not me though, I have you to thank for that epilepsy. Although I've had a lifetime to get used to that idea, it still doesn't feel right or justified that not only can you take so many memories but you can get in the way of others, and if I had to choose just one, that would be the thing I hate most about you.

Dear Epilepsy | 27

Dear Epilepsy,

After today I have 4 more letters to write to you, 2 more days until our review. For some reason everything seems to be measured in numbers, 'How many seizures do you have in a year?' 'How many seizures do you have in a day/week?' but more importantly I know roughly how many times you have visited me in my life. You, Epilepsy, have stopped me in my tracks and visited me nearly 60,000 times. That is nearly 60,000 memories I won't get back. I hate that you can take away so much of me, but I've began to control you, I have around 52 seizures a year, or around once a week in terms of absence seizures alone, and although some may class that as 'uncontrolled' for me that is a miracle. I've gone from around 40 seizures a day, to having 52 in a year, I've already won half the battle Epilepsy, and I won't back down now, in 2 more days I will have another plan to fight you head on Epilepsy, and each one works more than the last. So be prepared Epilepsy, because I'm coming to get you.

Dear Epilepsy | 26

Dear Epilepsy,

Today is Purple Day, a day where everyone in the world supports and raises awareness for Epilepsy by wearing purple. Today is also 13 months since I was discharged from the Hospital, on the 26th February 2014 I finally knew I had begun to gain control of you. You see Epilepsy, people may wear purple for one day, but I have fight you 365 days a year, never knowing when you're going to strike next, but after all this time I'm ready, ready for you and whatever you bring, you see Epilepsy, although you have a whole day to fight you I've had a lifetime fighting you so no matter where or when I will fight you and one day, I will win.

Dear Epilepsy | 25 Mothers Point of View

Dear Epilepsy,

I never asked for you to take over my daughters life for so many years. As a toddler she was in your grip and at time it was hard was hard to go through it, but as she grew she began to control you and the days you took her made her stronger. Today you still invade her but not as much but she is a fighter and she will never let you win. As for me, her family, friends and all who know her we will be standing right by her side every single day.

Dear Epilepsy | 24

Dear Epilepsy,

Relationships are meant to be give and take, whether that is the relationship between a mother and daughter or a romantic relationship, but not my relationship with you, I give and you take, I get nothing in return. You take my control, my memories, and at times you take my happiness. The other day for the first time, I went to the place you were  at your most present, an overwhelming feeling of reality and a sense of achievement, came flooding. The reality is, although I have done with that particular place and battle, I haven't done with you, but I've also come so far since we first discovered I had you. I have decreased the amount of seizures I have, you see Epilepsy, you may be winning the battle but I will win the war.

Dear Epilepsy | 23

Dear Epilepsy,

80 people are diagnosed with you every NHS working day, you kill around 1,000 people each year, if you were a human being you would be called, sick, psychotic, evil, but because you are almost invisible to people society's attitudes seem nonchalant, as if it doesn't even matter. In England and Wales, you claim more lives than AIDS and Cot Death combined, and yet people still don't seem to take you seriously, until you effect them in some way or another. For those you do affect, we have the daunting task of managing you, and the impact you have on our lives. That could be solved if just more people took you seriously Epilepsy, if more people took notice of you, we might be able to find a cure and beat you once and for all.

Dear Epilepsy | 22

Dear Epilepsy, 

You suck, you suck the life out of me. You drain me every time you come, you drain me from the side effects of the education I have to use to fight you! You never se to tire yourself out and yet you tire me out. You make me feel tired and yet restless. I don't know why you exist, you bring havoc into everyone's lives and yet seem to go unnoticed, no thoughts or consideration made not just to you but by you. You don't care who you visit. You visited me before I could even run or swim or cycle. You have no boundaries you won't cross. You just don't care. Like I said Epilepsy, you suck.

Dear Epilepsy | 21

Dear Epilepsy,

You think you can do whatever you want and I will just sit there and take it, but you're wrong. I'm not just going to sit back and relax, I'm going to kick your butt because I fight like me, I fight like a girl. I have strength and determination and most of all I have will power, and I won't let you get me down and I won't let you win. No matter what I won't give up, I won't stop fighting or trying to beat you, I will continue to try and continue to fight, because you Epilepsy, you can't bring me down. You see when you set your eyes on me, you set your eyes on the wrong girl Epilepsy.

Dear Epilepsy | 20

Dear Epilepsy,

Everyday I can't help but wonder when your next visit will be, or what memory you'll take next. Precious memories are stolen every time you come along, in one months time I will be 19, you've stolen so many memories in those years, memories I will never get back. I hope that you leave, that one day you'll be gone, not just out of my life but out of everyone's for good. Look at yourself Epilepsy, you're hideous, you're vile and nobody wants you, nobody wants what you bring. Everyday we're fighting, the researchers, the consultants, the family, the friends all on top of the person you plague. Pray Epilepsy, because one day our time will come and you will be out of people's lives forever. Society thinks you're not that serious, or that you're simply seizures that involve shaking. You're more than that Epilepsy you're my own personal war, a daily battle I have to face, but I am not alone, because Epilepsy you see I am not alone and together, we will fight you and we will kick your butt. No matter what we won't quit even if that simply means suppressing you. We will fight and we will win.

Dear Epilepsy | 19

Dear Epilepsy,

The pills on my bedside table are a consistent reminder of you, its funny because your always right there, ready to attack at any given moment. You're like a man on guard, first little chance you get and you'll be there, thats all it takes, one slip up from me and your back. All I need is a break Epilepsy, I know you won't go for good, but just a while, just enough time for me to sleep without disturbance, to feel alive and well, not groggy and ill. Your more than a seizure, your the feeling after you come, the medication I have to take, the appointments and reviews that all revolve around you, you see Epilepsy even if you don't come you still have all this attention, please leave me alone, just for a while.

The Girl Code

So as a teenager the words 'Girl Code' and 'Guy Code' seem to float around, but I actually realised that these are just words for being a good person. Here are my reasoning's/the 'Top Rules' of the 'Girl Code';

1. No hating on other women (should be person)- For some reason as a society we think its okay to drag a person down because of a) how they look b) how they feel c) where they come from or d) any other reason we can find. To me, that's not cool, its not clever and it certainly does not make you a nice person. The saying sticks and stones always comes into my head because I have been on the receiving end of that hate, and I can safely say, words do hurt, emotionally and mentally they hurt...a lot. The thing I find most ridiculous of all is how as a society we claim to hate this and yet still continue to do it. Nothing ever gives you a reason to hate on someone else, nothing. EVER. 

2. No hating on other women's (again should be person's) success- This leads nicely on from point number 1, as a society we seem to believe we can judge a persons success and then hate on it. There are 2 or 3 extreme's in this case, at one end of the spectrum we have people like Taylor Swift who get bad mouthed for doing something they enjoy or writing number one albums and singles and turning their pain into something millions of people can not only enjoy but relate to. Rather than celebrating that a girl/woman has gone through pain and not only dealt with that, but made a piece of art out of that or that they have become successful without having an inflated ego and are still down to earth, for some reason we like to bring them down. On the other hand we have what I call the 'simplest's' the people who take pleasure through the simple things. For example some people define success as having a loving family or a family of their own. Yet even though they're happy we like to judge them because they don't live in a big mansion or drive a Ferrari (we also like to judge people who have a big mansion and drive Ferrari's as arrogant or having a mid-life crisis). Either way you won't win.

3. Watch out for each other/Be there for each other- This is one of my favourites 'If your friend gets dumped be there.' That shouldn't have to be written as a rule, ever. Take away the friend part, if you see someone hurt, or in trouble or in a vulnerable state/position, be there. Be that person, not the one that stands back and does nothing, if you're on the playground and you see someone being bullied, stop it, ask them to join you. Even if you are unsure just ask, that one simple question may prevent a lot of hassle, and even if they are okay and don't need your help, at least you will have peace of mind. 

4. Treat others how you would you like to be treated- Ask yourself, 'How would I feel if this happened to me?' if the response is along the lines of 'not very good' you probably shouldn't do it, i.e. If you know a guy/girl has someone at home, don't go with them, if the y can do that to one person, they can do that to another. However, there is an exception to this rule, if the person would be better of being told the truth i.e.. you know their partner is cheating or they've misjudged the situation and are about to embarrass themselves, tell them. Do not shout it to the world, just take them to the side and tell them privately, they may hurt at first, but in the long run this may be inevitable and they will probably thank you eventually. 

5. Be Honest- Again, if this is going to hurt the person and there is no need, sometimes you're better off saying nothing at all i.e. *insert name here* has said *insert insult here* about you. However, if they need to know this information, or if you don't tell them it will cause upset/pain/embarrassment etc. just be honest. If you see their partner cheating, tell them, if you know how much they're hurting inside (and maybe out) tell them because they may be to scared to tell you. I'd also like to point out it works both ways, as human beings we can't read each others thoughts and therefore unless we use our words, nobody will ever know. If you need help, be honest, ask, whether that is because you're struggling at school/college/uni/work, people will be there for you (even if its someone you least expect). Don't let it go so far you wish you'd said something earlier or at all, no matter what side your on.

None of these should be guidelines for how we act towards a specific group, or individual, it should be how we act as a society as a whole to everyone. Whether you are young, old, male, female it does not matter these shouldn't be rules, they should be human nature and for some strange reason we still have to be told to act in a respectful and caring way. Which to be honest kind of sucks, and if we all did these without having thinking twice, maybe the world would be a nicer, happier place to be in.

Dear Epilepsy | 18

Dear Epilepsy,

Today was a good day, why? Because you couldn't stop me, today I smiled, and laughed and was happy, without you. Life is better when your not there. Today I spoke about how if I could live with you and face you everyday of my life, I could do anything, adapt to anything and more importantly be whoever I want to be. You see Epilepsy, you might control my seizures but you nor they control my life, I will beat you Epilepsy, and I do every single day you stay away, after all you should know, I don't give up and I never will.

Dear Epilepsy | 17

Dear Epilepsy,

In my life I have come across more than my fair share of bullies, but none greater than you. If I don't follow your rules you give me a seizure, even if I'm the most careful person in the world and follow your rules, you still find it amusing to give me a seizure. I cannot escape you and even worse I have to live with you inside my brain every day of my life. I cannot just turn you off when I please if I could you would be permanently off. Most bullies have a time limit, and most eventually leave your life, but not you, you insist on staying with me, but the thing is, you can stand up to bullies. I will stand up to you, and the bullies you create through lack of awareness, I will not surrender to you, I will have my life back.

Dear Epilepsy | 16

Dear Epilepsy,

You have been here for over a decade and a half now, in that time you've stolen so many memories from me and created fear within my family far too many times. One of the worst things about you is that you take away control, because of you I can't even control my own brain. You've given me thousands of seizures both in public and in private. You can't define me and more importantly, you can't stop me. No seizure will stop me from getting my degree, or anything else. I will be unstoppable because Epilepsy, I am not afraid.

Dear Epilepsy | 15

Dear Epilepsy,

Today is Mother's Day, whilst most mothers love and care for their children from the day I got diagnosed she had to go above and beyond. She had to explain why her baby was having seizures as well as what you were. Times where harder then, people weren't as understanding and information was scarce. She had to fight any injustice I faced I was her baby and had this label attached to me, I had you. How could you explain that your baby between the ages of 18 and 24 months was having up to 40 seizures a day, during those seizures my mother finally learnt how long 1 minute can be or even 30 seconds. You don't just mess with me you mess with everyone around me epilepsy.

Dear Epilepsy | 14

Dear Epilepsy,

Sometimes I can't help but wonder, what on earth do I have to do to make you leave me along? I've had test after test, medication after medication and gone from consultant to consultant and yet you're still here. No matter what its not just you I get, its the side effects and day by day they're getting worse, but do you know what I'd rather me than someone else I love, I'd rather it be me than my family or friends, I will fight you as long as you leave my family and friends well alone. I won't let you hold me back, this is where being a stubborn, tenacious person comes in handy because I won't give up no matter how many times you win.

Dear Epilepsy | 13

Dear Epilepsy,

Because of you, I have had to take medication everyday of my life since I was 2 years old, not just a little either. That medication, has lead to a lot of side effects, sodium valporate lead to severe nausea, the lamotrigine I now take that affects me internally like having a low folic acid level, constantly. I can't really remember ever having thick hair. Fighting you does that, all of it. Not only do you make me tired but fighting you makes me tired, no matter what I just can't seem to do anything but lose, but I know one thing for sure, I won't let you win, I didn't before, I can't now and I won't let you win in the future. No matter what I will fight, I will win, I will stay strong.

Dear Epilepsy | 12

Dear Epilepsy,

I have tried to find the best in you, I try to look on the bright side, but don't be fooled, I still hate you, with a passion. Not apathy and I can't act in a nonchalance way, or pretend I have a disregard for you. Every time you come, that hate and resentment grows. Most of all though I hate the way you make me feel, whether that is physically after one of your visits, or emotionally every time I think like I've beaten you only for you to return. I hate how much control you have on me, the stigma you plague on people. Why do you do that Epilepsy? 

Dear Epilepsy | 11

Dear Epilepsy,

Every time you come, I get a little bit more tired, a little bit more frustrated but also a little bit more determined. You used to come a lot more often though, you'd visit me day in day out without fail. You weren't welcome, not then and not now, but you're persistent and so am I. I've never let you get the better of me though and I never will. You make me exhausted and drained, but I know I have to fight even more because if I give up in those times, you won't go away, you'll just keep coming back again and again.

Dear Epilepsy | 10

Dear Epilepsy,

It's been a long time since we first heard about you, nearly 17 years to be precise, but you were there before we even heard the word Epilepsy. They said they think you've been there all along. They say you will probably stay as well, some people grow out of you, but I have 2 years left and each time you make an appearance, that chance decreases more and more. In those years you've made a lasting impression, and lasting memories. 

I can remember crying every single time my mum had to get the glue out of my hair after another ECG scan. I can remember feeling scared and vulnerable, because I had wires coming out of my head. 

I can remember Christmas being difficult, no flashing lights they said that is almost impossible at certain times of the year.

I can even remember being the 'slow' child at school because I would have an absence seizure and it would luck like I was confused or day dreaming.

I can remember the shocked look on some of my teachers faces when they found out I had Epilepsy, at the beginning that was because you weren't really heard of, in the end that was because of ignorance, because I knew the staff knew what Epilepsy was but regardless of the fact I had it in for as long as I can remember the teachers at Secondary School, some of them still didn't know after several years. I'd just presumed that it was because of the amount of students they taught, then I came to uni where a tutor can see over 1,000 students and yet still remember I have Epilepsy and still remember who I am.

I remember having a seizure on stage, well being told I had a seizure on stage, since then I've been so scared, scared of performing, scared of speaking in public, scared of making a fool of myself.

Although out of all of that, all of those years it has never hit me as hard as the past 2, realising that even little things like riding a bike, you make difficult, driving, swimming...impossible. The funny thing is, as I've grown older more and more things seem to trigger you, stress...exam time is fun, I can't avoid that one though can I, not when it comes to the future. 

On top of all that though, I've learnt how to fight day in, day out. How to face a problem head on, that brains are just as important as anything else. I've also learnt that taking care of myself is vita, I know plenty of people that are diagnosed with a condition like you, that create a few more obstacles in life ask themselves 'Why me?' but why not me Epilepsy? I am no more special than anyone else, and quite frankly I would rather deal with you myself every single day than have to watch someone I love battle you every single day. So for that, thank you Epilepsy.

Dear Epilepsy | 9

Dear Epilepsy,

Isn't it funny how to some people your just a word, whether that word is petrifying or curiosity, but for those you plague, you're more than a word. You're a way of life, you're routine, you're appointment after appointment, ECG after ECG, monitoring, triggers and the list, it just seems to go on and on. You're past, present and future but you don't just create fear, pain or curiosity you create miracles. You let every single person who has had a seizure during the night be thankful for one full nights sleep, or expectant parents understand the miracle of life after you've gotten in the way for so long. Not only that but every single day a person who has Epilepsy goes by without a seizure, you let them know the miracle of freedom and life without limits. 

Dear Epilepsy | 8

Dear Epilepsy,

As much as I would do anything to get rid of you, I also can't imagine life without you, you have been there for as long as I can remember. You make regular visits even if they're unwanted, but on top of all of that you have made me a better person. I know people will stare, they always have done, but I can still walk down a street and smile regardless. I shouldn't live in fear just because I have you Epilepsy. You are not my life, you may be apart of it but you don't control or consume it, and you never will.

Dear Epilepsy | Day 7

Dear Epilepsy,

I have dealt with you for as long as I can remember. You have taken memories away from me and created ones my family would rather forget, but what you also don't know is I refuse to let you dictate my life. More importantly, you don't know that things you helped me learn like, control, strength and hope, is what I will use to fight you every sing day, without fail. You may control seconds at a time, or when you come but I refuse to waste my life feeling sorry for myself. Thanks to you I know that people will have an opinion on me, I know that life will be difficult but more importantly I know its precious, and at any moment, part of that could be taken away. So thank you, you might be a pain but I know I can walk down the street with a smile on my face because life is too precious to let you make me miserable.

Dear Epilepsy | 6

Dear Epilepsy,

I guess its funny right, me writing to you, because after all you're there alongside my thoughts but the thing is, although I know plenty about you, you know very little about me. I bet you didn't know I love being busy, or that I can't wait for the future and what it will hopefully bring. I also don't think you know just how strong or determined I can be. You should, but clearly you underestimate me. So Epilepsy, watch your back, because I intend to fight you, with extreme strength, hope, determination and more importantly with a smile on my face.

Dear Epilepsy | 5

Dear Epilepsy,

How can you have a hold on me within a second, and yet in that time I lose control of everything? You have had so much control on my life and unfortunately will continue to do so. Whether that is a little thing such as taking medication as a part of my daily routine, or controlling the amount/quality of sleep I have at night. I have to avoid so much all thanks to you. But that's not just it is it, you're free to come and go as you please, and insist on coming at some of the most inconvenient of times, but that's okay, because I can fight you, I have battled for so long now, what's one more day.

Dear Epilepsy | 4

Dear Epilepsy,

Did you know that out of everyone diagnosed with you, only 5% have the trigger of flashing lights, thanks for that little quirk. I guess you could consider me lucky, after all most people have heard of that trigger right? Yet it still seems to get in the way whether it be at a fun fair or at an appointment with the optician. Not to mention all of your other triggers, all of the other things you bring with you. Hardly anyone knows about them, hardly anyone knows about you.

Dear Epilepsy | 3

Dear Epilepsy,

Why can you not get the picture? Why don't you understand just how difficult you are? You're invisible and yet you insist on being seen. You insist on being heard every time I have to say 'I have Epilepsy'. Yet although you insist on being heard you are still unknown, the amount of looks I've gotten as enough to say 'Well what's that?' or the 'I'm so sorry' look its like you've been unleashed and the world can see, but it won't last, you've had you're 5 minutes of fame, time and time again.

Dear Epilepsy | 2

Dear Epilepsy,

Most people have visits from friends, but not everyone gets visits from you. I've learned though, I know when to expect you now, and I can tell when you've been. For some reason you don't seem to understand you're not welcome, no matter what I try to do to stop you from visiting me again, you just won't take the hint. You seem to come when my mind is full with no space to spare, a reminder that you'll always have a piece of me. A reminder that you can come as you please and there's nothing I can really do to stop you.

Dear Epilepsy | 1

Dear Epilepsy,

Just as I begin my journey I begin to see exactly how you effect me, you see I'm only 18 for a moment and you won't take that moment away from me. After nearly 17 years of being with you I guess I've learned that you can't stop me! I have endless strength and determination and even though I have you, I won't let you have me.