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 

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

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

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 

Moving On

It has been a while since my last update, I have had a long year, with many ups and downs. To start of this is 2016, there is snow outside, and I am still alive, despite the efforts of my illness. When New Year came round I was surprised, I wasn't ill, nor was is in hospital or curled up in bed. I was happy. 

Now we are in yet another year and I am almost finished my college course, it has been educational to say the least. I have added to my skill set and now know how to code, and program and put together my own PC. This time last year I was being told I would not be able to attend University. I was cancelling all my plans to move on with my life, and past the pain of my conditions. Now, I am finally planning on moving out. I have regained some control over my illness-even if it’s only a little bit. I am getting my life back. 

University asks, why I want to study their course? Why media? Why journalism? Why production? The answer is simple, I want to help people. I love all things in the creative industries. I love words, films, news etc....because all of these things have the power to change someone’s life. They have the power to make a difference, even if it’s only to one person. This is a skill I will have one day. This is a skill the course can provide for me. 

I know the area has hundreds of applications every year, and I know I have been ill and have not got any highers, but I have experience, and a passion for the subject. In the coming week I will be attending interviews for different courses, and all I can ask them for is a chance. 

However even if I get no offers to attend a course, I will still move to Glasgow, I will still keep working on getting my chosen career, because last year, I gave up. I didn't want to but I did, and I have never been more ashamed. This year my condition is not going to get in the way of anything. I will not give up my dream.

Ask yourself, have you ever given up something and lived to regret it? Can you still do it? Would you change your mind? 

You’re Friend 

Jordy