Tuesday, 11 July 2017

Seeing is Believing


As you know I have a history of seizures, NEAD for short, I had them for a long time and would have fits/episodes daily.

How did it fell? I didn't feel a thing, I would go in and out of a fit, I would get split seconds where I would know something was wrong. I forgot where I was, what I was doing...who was with me...everything.

What did I know? Nothing. When in a episode I was just trying to gain control. This could last for minute's, or hours.  Going in and out of a seizure. I would not know if I was safe, or when it would stop.

I was often told how awful it was to see me go through it, how painful, and shocking it is. However I never knew because when it was over I wouldn't remember...I couldn't. I would know minutes before, sometimes seconds then it was a blur.

Today, I watched my sisters dogs, Dudley suffer what I had to. The look on his face, his inability to move, or stop what was happening.

Tell me, if a seizure is bad for a logical thinking person, what must it be like for an animal?

Of course after it was over he got up and started playing with the other two again, like it never happened...

I wish I could forget like that...but I can't. He can however when it happens he has no idea why. I now understand why people would cry after seeing me.

It is only through control, and hard work I am able to keep mine from happening for now...I wonder, can a dog learn to control it?

I don't know. I doubt it, though it would be nice. I do know I never want to see a animal that scared again.

Monday, 20 February 2017

Up to Date

So, this week I have been at home taking care of things while my mother has been have an operation. 50/50 chance of it working. 50/50 chance of it killing her.

She put of the operation while I was "ill". She put her health last to work so we could keep out house. She put her health last over everything. Not only out of fear for something going wrong, but for her family.

She is an inspiration.
Selfless.

What is it to be selfless? to me it means putting others before yourself. It means sacrifice. When someone is selfless it shows they love them.

My mother had her operation. Now we wait two weeks to see if it will fix it, kill her, or if she needs to go back on the operating table.

My health. It seems that when you fix one thing, or gain control another thing goes wrong or pops up out of the blue.

My question. Is it even possible to be 100% healthy?

Your Friend
Jordy

Monday, 30 January 2017

A late New Year

Sorry I haven't been keeping up to date, college and work, and balancing life is rather hard. 
I am now writing this as I have made the time. 
2017. It has the potential to go far, to take me where I want to go. However it also has the potential to stop me.
I have been thinking a lot about where I want to be, in life. What I want to be remembered for. So with that is mind , I don't want to be sad, depressed or even remember as "that girl in the corner".

I have dreams. Ambitions and places I want to go in my life, however long it may be.

I know I am not smart, like my sister Bethany. I am not beautiful like my sister Abbie. I am not as strong as my sister Alex. I am not as resilient as my parents and I am not as caring as my brother Logan.

I am me. Who ever that might be.

That's the trouble, I know I am me, but I don't know what that means really. I am 19 so I imagine that is normal, not knowing who you are really...

I am good at art, writing, and that is basically it. I have tried to find where I fit, I found it last year with my friends. I love seeing them at home. But in terms of what I want to do, I tried everything: radio, painting, newspaper, tv and technology.

I only fell in love with two, technology and my writing. Thus it would be logical to be a journalist?

I love the idea however I am worried about making the wrong choice?

My question, how do you know?

Your Friend
Jordy

Saturday, 10 December 2016

Christmas Fast Approaching


Two week until Christmas 2016. I have been thinking a lot about family and what they mean to me. After all I have been doing loads of shopping!

And the thing is, I can't find anything out there that expresses what I want to say, or what I feel. My family, as I have said many times is everything, from my close friends to my sisters and brother.

My mother is ill and putting everyone else first.
My father is in pain and working 24/7 to keep a roof over their head.
My brother is lonely and a child.
My sisters are hard at work, making something of themselves.
My friends are working, studying and a distance away from me. 

My family is strong. And everyone in it has done a lot for me. I love them all but my parents are the ones who stick out the most. My mum checks in every so often, but I haven't really spoken to my dad in a while. 

For those of you who don't know, my dad is my rock. He keeps me strong because he is strong. He keeps me working hard because he has worked hard every day since he started a family. He has HME. He helped me to accept myself and got me to where I am today. He always knows what to say-even if that is saying nothing. 

So this Christmas, all I want is for my parents to be happy and to sit down as a family. My aim for the new year, is to be half as selfless, and dedicates as my mum and dad. 

What is your aim or hope this holiday season? 

Your Friend 
Jordy 



Wednesday, 16 November 2016

Update

So for those of you who don't know, I have moved away from home, started college in Glasgow (Studying Television) and moved in with my partner Jack...all in the last 3 months.

I have achieved the goals I sent. I am independent, or as independent as I can be with my conditions. I have everything I wanted last year.

I was told I wouldn't make it. I was told I would give up. I was told "we will see how it goes" that I was making a mistake...and so on. However I left, and did what I wanted to do anyway. With or without support, I was determined nothing was going to hold me back again. I was not going to spend another year at home regretting my choices.

Now, I am my own person again. I know that sounds daft but you get to the point where your conditions take everything from you, they make your choices for you. I have spent the last few years letting them do just that. I stopped doing things that made me happy, that made me feel like me.

Now that I have moved out, I realise just how much of myself I lost or gave up. I used to paint, go on long walks, hang out with friends, talk to strangers, I didn't care what people thought. I used to enjoy photography, writing, singing.

I no longer paint.
I don't go on long walks.
I hang out with my friends (unless with Jack)
I don't talk to strangers.
I care what people think.
I get no joy from photography, writing or singing anymore.

Now, I have overcome and learnt to live with my conditions. I realise just how little of what I do, I do for me anymore. I don't like going out, or drawing attention to myself so I stay in and work. I find at college I try to talk to my class mates as little as possible because I am tired of being rejected, or worried I will say something wrong- this is one thing I am still very good at.

I won't lie, I am struggling right now, but I guess that is a given. After all who said life was easy?
What am I saying?

I am saying that life is about the good and the bad. It is true, you can;t have one without the other. You have to take what you are given one day at a time.

I thought that I was winning, turns out I was just dealt another hand. Now I need to try and find myself again.

The only thing is, I feel like I am going in the wrong direction! I have no passion for TV anymore, or media, I am In class and I feel nothing. I dream of a future in Television and I feel nothing. Is that wrong? Is It to late to CHANGE?

I the past when I thought of the future I was thinking of the following weeks, my dreams were only dreams, silly ideas. Now I am working towards the dream I thought I wanted and I don't know. I don't know If I am still the same girl that was dreaming of making master pieces, of winning awards.

Do any of you feel like this? Lost or just forgotten in a way? I know that I started this wanting to help people, help you but right now I am unsure on how to help myself. Can you?

Your Friend
Jordy

Saturday, 14 May 2016

Second Thoughts

I was sitting with my mum and dad the other night, just having some wine and we got to talking...As you know I have HME, VWD, NEAD and a few other things. You also know that I think often about kids. what if I had my own? 

We were talking about what would happen If I ever do have a child, what would I want my partner to do? who would I want to live? 

The thing is I do have to ask these questions. My partner needs to come to terms with them. My own father almost lost both my mother and me, when I was born. He almost made that choice. So baby or me? Every time, the mother should choose the baby. Or at least that is what I would do. If my partner chose me over the baby, if he chose to save me, then he would be wrong. For if that ever happens he would not be saving a partner, or a wife, he would be loosing us both. 

I know I could never live with that, and I could never be with someone who doesn't feel the same way. In light of that I am 18 and thinking about making a 'living will....' I am 18 and planning what I want to happen when I die. Though after the last couple of years and almost dying to soon more than once in that time, I have to say I should have though about it sooner. 

Would I be happy if I were to die? I would, even if I were to die tomorrow. That is my reality. I would be happy because I have done a lot with my life. I had someone email me the other day and tell me how they would be happy if their daughter was like me. I sat and cried at that email. This woman felt guilt because her child had HME, and I helped her come to terms with it, just a little bit. I think that it is all anyone can ask really. 

To me a baby, and child? HME or not, is worth the risk.
Think about how lucky you are, and think about how beautiful life is, HME and all...

Your Friend 
Jordy

Wednesday, 16 March 2016

Comedy 

Today I was sat with my fellow students and we were talking about suicide jokes. How much it upset them that someone would use it as a subject in their punch lines. How it is not a matter to laugh about, its a serious thing. Now I 100% agree with this, self harm,depression or suicide is not a laughing matter. However I got to thinking why are these people hurt by this, yet they make disabled, "retard"and "spaz" jokes every single day- to my upset. 

I made the mistake of saying this very thing. They simply said, "its only a joke, we don't mean it". I am sure that is what the people think about their suicide jokes, yet you take offence. I sit in class, in society and put up with your jokes, about people like me, people in pain. Yet you take insult at others doing the same thing to you? 

How is this fair, I asked what the difference was, their answer; "you would not know how it feels". I gave up my argument then and there. I was not going to win. How could I, without causing further upset. 

So now to those people who feel it is okay to joke about medical conditions of any kind, I say; "I am disabled, I am in pain, tired, and lonely 90% of the time, even when I am surrounded by people. I know what it feels like to hate yourself, I know how it feels to hit rock bottom, to be unable to see anything good in life. 

I do not see the difference between you or I, everyone in the world feels, and has been hurt by a simple joke that another has found funny at some point in their life. Why is one kind more hurtful than the other? is it because one applies to you, or someone you know? I would say that if you make a joke and after think; "this is someones life, people have that..." or  "I hope people know I'm joking" then its not funny, it has hurt someone, and you asking yourself that question only makes it true."

Mental illness is not a joke.
Suicide is not your punch line. 
Disabled people are not there for you to imitate.
Words like "spaz", are not okay to use when describing your or others "mess-ups" or "issues". 
Self-harm, is not something to be said when you think you have a hard day ahead.

After all, somewhere, all of these things and more, are someones life. In conclusion, are your jokes really funny? think before you make them, and say sorry if you do.

Your Friend

Jordy