Better View

The other night I decided to go for a bath, like everyone dose when stressed of worried. It is a place to think, its quite, warm and nobody can get to you...or at least that's what It was meant to be. I don't know how long I was in there, I don't know how long I was splashing water onto the bathroom floor while struggling to breathe. I do know if my parents had not heard the banging, I would have died.

My dad pulled me out, I could make out the noise of my mum crying, and the worry both their voices. I remember the splashing of water in between fits. The one thing I could think about after was what if I hadn't been found, what would I regret? if anything. Funny thing is I could only think of two things.

1. Not correcting the wrongs. You might be thinking; "She is 17 what could she have done?". The answer I have done enough. I remember being so harsh on a member of my family for her hatred and her own mistakes. How silly it is. 

2. Letting people I care about leave angry. Never let anyone go home upset, or mad at you. After all it might be the last time you see them. It will be how they remember you till the next time you meet.

I want to be one of those people who doesn't die unhappy, or merely content...but blessed. I am 17 years old, and I am no longer scared of dying, nor of living. We should all just live life day by day. Say what we feel and hope for the best. Forgive others for their mistakes and any wrong doings, after all life is to short to hold a grudge.

I want people to ask the questions; what would I regret if I were to die today? and how would I make it right if given the chance?

Kind Regards
Your Friend

Jordy x

Bye, Bye Baby

I have now seen my wee nephew 3 times since he was born 15 weeks ago, he is called Jason...and is the happiest baby I have seen. I am very proud of my friend for having him and how well she is doing, yet I can't help but feel a little stab of sadness each time I hold him knowing I might never have a child of my own. I have cried on several occasions and like any girl have picked a name, and almost planned every detail. However I know the idea of me raising a child will only ever be part of my imagination. Yet another downside to having my conditions. I can't even be trusted to stand up with a baby without fitting or falling. I know it is daft that at the age of only 17 I am hurt by the possibility of this but I feel like its part of many peoples life plans. You see we are born, we grow up, we get jobs, we have kids, we look after those kids and then we die....not always in that order but close enough.

So a child is just one more thing "god" or life has denied me. I will still help as best as I can with my wee nephew. If I can't be a mother ever, then I may as well be the best aunt. Dose anyone else ever think about how their condition will effect their future, not their job or their education, but their family? you don't need to respond just think about it. Think about what you can have, or can do....instead of what you can't...

Kind Regards 

Jordy  

I am happy, I have made more friends. I have found a part of the endless puzzle that is my life. I know that It is wrong to expect people to stay. But I don't get called names anymore, I don't get kicked when I am down, instead I get picked back up. I was in the common room once when I had a fit, and 3 of my friends + a random stranger helped me, they didn't have to, I know they didn't, but the fact is they didn't hesitate to help. 
After so many walking away, I had come to expect that of my own age, but now I have my long term friends and I think I am making new ones...I can't help but hope they will stay, we shall see. 

Ask yourself is their anytime in your life you regret not helping another, or a time where nobody helped you...ask yourself why? and if it has changed? because I know it will. 

Kind Regards 
Jordy

Returning.

The sun has once again started to shine and the rain has decided to take a holiday, I should be thrilled, the trouble however is it's now time to go back to school. This is the time every teenager has been dreading for the last week, or will be when their alarm clock goes of at 6 am tomorrow morning.

For me I am not dreading going back and doing the work, I am not dreading the early mornings or even walking up and down stairs all day. I was asked how I feel about going back for my 6th year and all I can say is "fine". "Fine" as in 'Don't know'. Why? Because I know that when I go back there is every chance me having an episode in the hall, walking down the stairs or even sitting working in a class room. That isn't so bad, or at least it wouldn't if I knew what exactly people think when they seem me crying.



So when I say I am fine with going back. I really mean, I am afraid of what I don't know. I don't know how it will work. I don't know if I will manage to stay, with people already talking of pulling me out of school again. I don't know how these episodes keep happening, no matter how many people ask me.



School brings enough problems for teenagers, but for those who have other things to deal with on top of grades, tests, hormones and puberty, school becomes all the more daunting.

So I guess the question is this, when does it all become to much? and how do you know when to quit?



Your Friend

Jordy

Evidence

Okay, Today I have been thinking a lot about pain? and what it is? I mean, I see two different pain teams and not one of them has helped me. In fact they both say different things...so I guess the problem is nobody really knows what pains is, and if that is in fact the case then should I really be surprised that they can't help me? Normally they would give the patient painkillers or advice; for what ever their problem or condition is. However they do not know what is wrong with me at this time. They do not know why my chest burns or why the pain is so strong, therefore the do not know how to treat it or me.... I was not surprised when they told me they were at a loss, I think I went in expecting it, I was not happy, I was not sad....I felt nothing. I simply sat a listened as my parents spoke, and the doctor answered their questions. 

They said things like ...
What if I were home alone? 
What if she were down stairs at night? 
What if she stopped breathing? 
What if we turn our backs? 

All the questions they asked that day were the very questions I often ask myself at night or when I have the time to think. However the doctor doesn't really trust my families fears, because he (or they) do not know the pain or the fear, he has not seen my mothers tears, or my dad sitting blank at night. I do, I have. I even see others cry for me, others who should not have to cry tears, not for me. I have seen my brother sit in fear because he is to young to understand. I have heard my family speak at night, how scared they are. So when the doctors act like I am just another teenager, trying to get some drugs or attention. When in fact I am one who tries not to take my painkillers, and do not enjoy being left in my bed for the majority of the day, I don't enjoy pain, nor do I enjoy the lack of concentration that follows with my cocktail of proscriptions.

So I ask you...how many nights, how many days or hours do you spend worrying about a friend, or family member, or maybe even yourself? And how much of that do others truly notice or believe?

I know that people don't think I am ill unless they have seen it first hand,  I wonder however, how many are in the situation where they have pain, but no evidence? How many suffer in silence? Remember nobody is alone in the fight...

Kind Regards
Your friend
Jordan

Future Past.

Today I have been thinking a lot about what it was like at the age of 13 and 14, how I felt, How it was. How others saw me...and I am surprised looking back at where I once was...in comparison to where I am now. Yes I have not aged much, after all there is no jump from 14 to 16 yet I feel like I have learnt a great deal. I know how people and places can change their whole view of you on the one, small but complicated fact of a disability, condition or illness. I remember I felt angry all the time, because I felt so alone, even empty. I though for some reason I could and should punish myself for my own weakness. 

Now however I see that my HME is not my weakness, but in fact my strength. So few really know where they get their strength from, some say love, others say strength is only physical. I say strength is that one thing at the end of the day that will get you through tomorrow. I know when I wake up I will be in pain, just as I feel it when I lay down to bed each evening. However HME has given me in site into who I am and is the very thing that makes that changing of age each year worth it...because each year I get closer and closer to being treated like an adult, and not a child...which is something I don't feel I was for long. 

Try to think of that one thing that has changed you, that has made you who you are today. Who were you 3 years ago? what were your feelings, dreams? but overall who do you want to become? 

Remember nobody is alone in the fight. A very nice young woman told me today "we have to stick together" I could not agree more...what about you? 

Kind Regards 

Jordan 

Party Crash 

I was at a party the other night and Like any other teenager my age I was having fun, laughing and drinking a little Guinness ....I got to see old friends, some I hadn't seen in months others a few weeks. Then out of the blew the pain in my chest kicked in and refused to let me expand it more that a inch or two. So I sat there, Jack holding my head up and keeping me straight to allow as much oxygen in as possible, and Paul who sat with me, reassuring me everything was gonna be okay, that I was gonna be fine. In an "episode" as I have come to call it, things get fuzzy and all I can feel is the pain, and I can only see what is in front of me. That night it was Paul, Jack and Declan holding my hand, stroking my face and telling me they were there to help. 

It is funny how in these times you find out what a person really wants. Who they are to you. If they really want to help or if they are there to watch?  I asked Paul why he was helping me? why he was being so nice... the answer....because he cares, because he likes to help others. I asked the same of Declan and yet again the answer was because he cares. As for Jack he helps because he knows me, he loves me. 

It is strange to think that I am now in a place were my friends help because they care and not to get something in return. They do not use it against me. In fact they simply say, so long as I am okay.

I admit this is a strange situation to be in. Normally people ask me to repay them, they ask for a favour or demand something in return. But My new friends simply want me to get better. Upon the hundredth time I asked why they were helping, I finally took in the fact that they were simply nice people, that they really are my friends.

This thought, or feeling, what ever it is...made me feel happy, and so I cried even more...before I didn't think for a moment they were doing it for me. I told jack that nobody ever does anything for free. 

Now I will say to you I was WRONG. Family and Friends will do anything if they care. I am grateful to everyone who has helped me when I didn't have the ability to help myself. I am blessed that they are kind enough to not ask for anything in its place. Few know how rare it is, Few know how sad it is when you are put in a place of vulnerability. But my friends know how to help me. However they will never know how happy I am that they help, and they care. Because for the first time in my life I have more than 2 people (outside the house) who will be there to support me, and it feels amazing. It is something I never thought I would have.

So in conclusion, if I can find people like this, who are simply kind because they care. Then so can anyone, It just takes time.

Kind Regards 

Your Friend 
Jordy

P.s 

Thanx to all My friends who have helped me, or even smiled and taken the time to ask about things they don't understand.