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‎                                    My story:  Gourp member  Yuejing Yu‎

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GROWING UP WITH EPILEPSY:
I am Yue-jing Yu and I am here to tell you my story and views on Epilepsy.

Growing up with epilepsy hasn't been easy. For many people with epilepsy

it is a constant reminder that you are different.
Some people have it worse than other people, others have it easier. In my case,

I could say that I have it not too bad.
It is regulated so I have fits a
couple of times every two to three weeks. But it is different for everyone

who has it, some
people have many seizures a day, some once a week or even once every

six months or so, some people only have nocturnal fits, it differs.
But there is at least 30 percent of those who have seizures and they don't

have any treatment for it.

From a very young age I knew there was something different about me

because I always had to go to the hospital, but it wasn't until I was older that

I asked my mother what was different about me, that she told me I had Epilepsy,

but I still never really understood
what it was.
It was only until I started going online and finding the information that was

available that I really started to understand that
it was electricity in the brain causing seizures and making me not remember

things.
I understood that I was an you could say an unlucky one, the last fish out of the

tank you could say. I understood that Epilepsy
was a illness anyone could get at any age and at any time, not necessarily

inherited and up to this day I do not know if mine
was inherited or not, not that I would have a grudge if it was.

So how did I cope? Well, I suppose I just did my best, like when I was going

home from school, I would always phoned my mum
to let her know where I was. There were times, when I wanted to do things like

being able to go clubbing, or go out to bars and hang out.
But of course I was younger then and I did not understand the dangers of

fits.

I always felt, even up to today that I never got to do the things a

young normal teenager should have done and I never really felt like I had a proper

childhood,

I was always protected.
I did not do Halloween's trick or treating or going on roller coaster, never

been to a nightclub, I went to a small club once but that ended badly and
now that I'm older I have done a few things I didn't get to do before, I have been

on a roller coaster, been to karaoke clubs and have stayed overnight outdoors

with friends.

Family of course, they have their ups and downs. I think for each family, it takes

its toll in different ways, depending on the actual person who has the epilepsy.

For example, if a person had seizures very often then family would be more

worried than if an epileptic person only had it every few months.
Having any illness is a worry, having to more look after the child before he or

she can start to take care of him or herself. I personally never wanted this illness, I did not want my mother and father to over worry about me. I can only just imagine the worry of seeing me for the first time

having a seizure at two years old. But of course I would rather have this illness

than something like cancer or heart disease.
At least I usually have an idea of when my fits come and go, many people don't,

and so I don't need to worry my mummy too much about it, though when I was

younger and did not understand about epilepsy I did not see why my mother

was always worried.
I would tell her things without realizing and that inside made her worry more,

for example I would say "it is my fit time now " or saying "I am having fun outside"
and even up to this day, I am always having to remember not to let her know if

I am going out even if it is not my fit time because I know she will worry.
And when I do go out and HAVE to let her know i.e. buying her things I have to

make sure she is not too worried and of course let her know
where I am every now and then and of course when I have got home.
I realized it is just a mothers thing to be extra worried with a child who is ill,

a switch you can't really turn off.
I know of other mothers who hardly give a darn about their children,

maybe it is the way they are brought up, or maybe it is
the kind of generation and country you live in.

So how does a fit feel? well, it varies. The fits I have when I am asleep I do not

know and when I awake my husband jerry always tells me I've had a fit.
But when I do know I am going to have a fit, it feels like a buzzing,

an adrenaline I get in my brain and each time I try to remember how it feels.

I try to control it sometimes, and when I'm lucky I can stop it and I just feel

dizzy but not actually go into the fitting stage. I call the "Passover" but I do know that after I have had a Passover I will certainly have another fit later andwill go into the fitting stage. Another thing I found is that in the past when once or twice I had to eat the 72 hour after pill the fit which I had afterwards wasalways more violent and they,like the monthly cycle would get interrupted, so being instead like every two weeks, it would be either a week or at least 5 days different. So my advice to people who have epilepsy, never eat it.

Just be safe and use condoms.Children of course, many people have asked me whether I want or have

children and I answer no. I always wasn't that keen on children, the wailing, thechanging of nappy's and getting up in the night, the sickness from beingpregnant, and of course the actually pain of giving birth.
Men of course they don't need to do as much, they just bring in money, give support like all husbands should do. But they do not understand that havinga child changes a woman in many ways, both mentally and physically.

But in my mind of things, all these reasons were there before I understood the main reason why I did not want a child was of course the epilepsy. Only in thelast year or so did I start to understand the risk I would be taking if i had a child.

I would have to go off my medication, just in that is a risk, because I would never know when I would be going to have a fit.Also, if I had a fit whilst being pregnant, that would be bad for the baby and me and of course it may being hereditary. Like jerry said if you can't look after yourself, how can you look after a child? That is something I will always remember. And of course, if I did have a child, and the pregnancy did go went smoothly but he or she had epilepsy I would need more money to look after them, taking them to the hospital like my mother did me, feeding, schooling all the normal stuff.
Raising a child is expensive wherever you are. Luckily for me my partner jerry is the kind of man who doesn't want a child. There probably would have been many men I could have married who want children but don't understand the risk I would be taking, many men who have tons of cash andmay have avoided people like me who have an illness saying it would be a burden on them, that I personally think is a little selfish,
because if you really love someone you wouldn't care about what illness that person has.Jerry is just like that, he didn't worry about my illness when jack his friend told him about me, and when jerry told me about his
back, I didn't either. So we are like two sides of a stone that have been brought together and they fit perfectly.

Has life with epilepsy gotten better for me? yes, you could say so. I mean, before I came to Beijing I was a wreck, something not quite traumatic but it definitely wasn't really normal. I am not going into details but afterwards, I came to Beijing, trying to start a new life.
From the time I arrived to now, its been almost 16 years, I have been through ups and downs, boyfriends, moving house, marriage, funerals.
But I think everything got better since I got married. It has given my parents space, time to ease up on the worrying, be happy for me and my jerry.
Yes of course, marriage itself we have had our ups and down, who hasn't. But being married to jerry, it has given him the responsibility of looking after me.
And for the most part, he has done a darn good job. In that way you cant ask for a better husband. Yes, no one is perfect, jerry isn't, I am certainly not, though my mummy and daddy are. I think, in a way, god has tried to tell me that after all these years I need to repay mum and dad for looking after me.
In other words, I found jerry, almost perfect, apart from his back, which in sense makes it my responsibility to look after him.
All the years mummy and daddy looking after me, and mummy coming day after day to my room to feed me my medication, its my turn to feed jerry.Its just in my nature to make sure he takes his medication, though probably I think it is because I am so responsible not to forget my medication that it rubs off,
and I have to see to it that jerry takes his too.
I know sometimes he forgets, and that makes me a little mad. I mean if it was something not important that's fine, but this is your health.
I think anyone would agree with me on this. There have been sometimes that I wish I had jerry's illness instead of epilepsy, I know that sounds silly, but i hate blacking out, I suppose jerry's illness which is ankylosing spondylitis is less serious than mine because its only his spineand mine is the brain. It would have been nice to have someone either jerry or me which has no illness at all, only one partner which has an illness.
But that's life, no one can control what happens  to us. In the end it just depends on how you cope, how you deal with the illness, whether you just let it control your life, whether you fight it and let it become your mission to win, or you do it like me which is work your life around it, don't let
it affect your life too much, try to be happy and of course keep on the medication. Keep an open mind that's what I always say,don't worry too much.
Hopefully I will get better, and the fits will become less, but for the time being, I shall go on as I am.

Thank you for listening