Tuesday, 23 December 2014

Its a time full of candy canes and Christmas trees however there is more than just gifts to this time of year. I have spent the last few days cleaning and trying to get the house up to scratch for my family members on Christmas, not that they care clean the house is. This time of year is one of the things that keeps people like me, or like you going every other day of the year. Knowing that at the end of it we get to sit with our family and friends and forget all the pain, the worry and the fear...even just for one day. That day for me is simply a second chance.

Merry Christmas and Happy New Year

Your Friend


Sunday, 14 December 2014


I was sitting in class the other day not long after doing a close reading paper and the teacher was helping people fix their mistakes. And a large number of the students going up for help were finding it hard to describe a scar as anything other than a scar or a mark. This caught my attention and I began to think about how people really see them....are they really just scars, or is there something more?

Now of course I found this easier than most to re-word, after all I have many scars and to me they are far more than a mark on the surface of my skin. A scar is something that lasts forever, there is nothing that can take them away. Yes you can hide them, but trust me, they will still be there. My teacher simply said scars are from trauma of some kind, they are painful, and lasting.

I say, they are memories almost sown into your skin. For me they show the pain, the anger, and even bring back memories of every cruel word said to me over the years. They are my story. I still find myself staring at them and thinking how they look, how people see them...I see all the pain they caused me over the years. However as well as forcing me to remember the bad things, they also help me to see what I have overcome. They remind me to be strong, even though they make me cry some days, not because they hurt but because they are there.

I once thought they would cause me problems. I thought that no one would ever see me as beautiful, and no one would ever love me because of them. I was wrong. Jack, is a lot like me, he tells me he likes my scars because they are a part of me. He says there is no need for me to hide them, or get ride of them with make-up and creams. Now don't get me wrong, I don't always feel the same way, in fact most of the time I hate them for not going away.

But at the end of the day my scars will always be there, and I have to live with that. They are both a strength and a weakness, and I love and hate them. However knowing that if people can look past my scars and still say I am beautiful, then I know they are there to say.

What about you do you love and hate, yet would never really change? Remember no one is alone in the fight...

Kind Regards

Your Friend


Sunday, 30 November 2014

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

Saturday, 8 November 2014

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 

Thursday, 25 September 2014

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 

Monday, 18 August 2014


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


Monday, 21 July 2014


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

Wednesday, 2 July 2014

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 

Wednesday, 18 June 2014

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 



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

Wednesday, 11 June 2014

Short Term Loneliness 

What gives one the right to say, they are lonely? Is it sitting in a corner on your own for the majority of the day. Could it be silence in a room full of people, lack of communication with others? No. That is all to do with fear of being rejected.

Being lonely, is having to suffer alone. It is the knowing of yourself and the knowing that others can't help. 
Sadly no matter who sees, no matter who you are, or what you do...at some point you will feel so lonely it frightens you. The important thing to remember is eventually someone will hear you cry or hit on a wall for help. It is in this you must have faith. 
I know how hard it can be to depend on others after a lifetime of friends letting you down in a time of need. I know how difficult it can be to show you are in pain at risk of looking weak. Showing them exactly how they can hurt you. 

I can still get these thoughts and more running through my head from time to time. Every time I have an "episode" or use a crutch I fear that someone will kick it from under me, purely because its happened before. I doubt that fear will ever change. After all if you get stung by a bee at the age of 5 you wont try and catch another bee at the age of 16? because you know it will hurt. I have gotten used to a small handful of people seeing me cry, or scream when moving. I have gotten used to the look of fear or pity of their own face. Only now with those people I don't see it as an insult or think they will use it against me on a letter date. I see it as them caring.
Often after nobody is around I sit and I cry because that feeling of anyone other than my family caring is still so strange. Sometimes even the most unexpected people, who others give the wrong idea about ;can be there to support me and in that I admit I was wrong and let my own view be influenced by someone's warning. This has happened only twice. And I like to think I gained a friend I can ask support from and maybe made a base for another. 

My point is, friends can come along at anytime. So even though you feel like nobody cares or you are alone in a dark place. You are not and never really could be. I know now that my friends are more part of my family than anything else. That kind of trust, and faith is worth waiting for. I waited years, and was rejected by so many but If I hadn't been; then I wouldn't have such an amazing life cause of my extra family.

So have faith if you are right now in the place of darkness, and crying in your bed at home or asking your mum or dad why nobody likes you. Because I promise, one day all the pain and all the tears will amount to so much more than a friend. It will take a lifetime of hate and turn it into acceptance and your tears will represent your happiness instead of your loneliness.  

Just wait and see. 

Your Friend 


Wednesday, 28 May 2014

Why is it so many of us feel like we can judge others...yet we are the same. Why is it we look differently at a man in a wheelchair to a man who walks freely? They are the same. They both breathe, we all see, hear and feel emotions in reaction to our surroundings....So why do we not see our fellow man as just that, normal stranger passing us in the street....no matter what stance they pass in. 

When we pass the person using the crutch, a blind man walking his dog or a woman using an electric scooter, why do we feel ashamed to stare? Is it that our minds tell us not to or do we fear insulting them if we dare? I do not see why this simple social behavior or curiosity to take a closer look or to perhaps glance over should be seen as offensive in any way shape or form. You would look at any other human being as they pass you, you would not overt your eyes to a “healthy” and “able” man; so why would you if they are disabled in a way?
When I am using my crutch for support to go get my brother from after-school club or when I am out with my friends I see the way people look at me. Is it pity or is it shame and disgust? The realization that is it in fact you who are out of place hits home. Is it right that we who are disabled should feel cut off from society and feel watched by creeping eyes as we walk the few steps from the car to the shop? On the inside we are the same. We have a heart, a soul… we experience the same things as anyone else; we simply have to reach further to achieve it. I often wonder what goes through somebody’s head when they see me; walking in crutches. I do this by relating back to how I see someone in a wheelchair. I often ask myself, how do they feel? Will they go round me? Should I say hi? Or thank you? What happened to them?
Once they pass I take a deep breath and let out my relief that I escaped that somewhat awkward situation and the feeling of not knowing. However the thing is I react the same way to whoever I am passing on the street, no matter what their situation or how they dress, who they are and what they do. I am always left not knowing how to react to their approach.
A disabled man still feels the earth beneath his feet. He was born like everyone else. He will live his life just like you, and he will die and be remembered for being a man. He will not be remembered as disabled or a mistake as I so often hear people refer to others who have a condition. In my mind everyone is equal and human, nobody is weak. Nor is anyone less worthy of your eye contact or a polite smile.
In school I remember the strange look on the faces of students, their confusion on how someone so young can have crutches for reasons other than unnecessary accidents in football. I am told people know I have “messed up legs” at the time this wording was somewhat amusing and reassuring. I knew that the lack of their comments meant they didn't see a difference. However when I went to school in a crutch, the younger ones often didn't care that I needed it for support and took so little notice in my ailment I would go into walls and often get elbowed or slide the stick along.
So when does acceptance become arrogance?
Teenagers should feel free to be who they are, and at Peebles high I felt like I was accepted, yet I hated taking my crutch into school knowing what to expect. My point is that people are the same but in some cases their difference should be taken into account. You would not push a strong man into a wall, why a disabled one? I for one am not as fragile as I look, but I do like respect.
I am a 16 year old teenage girl, as if it were not bad enough…I am disabled. However I refuse to believe that we can’t all accept and respect each other as equals, after all a man is a man. A human is a human. Yes we all live a different life, and there is no one person that is the same, but we all come from the same place, we all love, and hate. So the next time you pass a stranger disabled or not remember they are just like you…they are alive.

In conclusion why do we fear the confusion of disability? 

Your friend 

Sunday, 18 May 2014

Another Weekend

The last two evenings I have had to be taken in to A&E due to my chest pain and my ability to breathe being reduced as a result. As I stood there the first time try to expand me chest I was scared. Not just of the pain, but of what might have happened if it had not stopped. My friend had to hold my arms up to shoulder height...it is meant to stretch out my chest. My sister didn't really know what to do or what to say. However none of that was as bad as last night. I was sitting with my mum and dad in the living-room, just sitting...then out of the blue a sharp pain stretches down the front of my chest and out at both sides. My mum was crying, my dad was scared and holding me up as best he could. Thankfully my sister took my little brother to his room so he didn't have to see me is so much pain. I can only imagine how little he must know of it and how bad it is for him to witness.  
I am 16 years old, and last night I was blue, pink and confused. It wasn't until that ambulance came that they gave my something to block out the large amount of pain that I caught my breathe. However a few minutes once I came of it the pain would return, and so it was another trip into hospital.

They did not do tests, or scans, they simply left me waiting until my turn came on the list. When the doctor finally came he simply said to get more painkillers, and sent me of home yet again in pain.

I wonder what about of pain do they see? what level of screams do they hear? Or is it that they see and hear me, but they just don't know? 

Tuesday, 6 May 2014

Another Wall. 

Another appointment today, another disappointment. I reached the point today where I have run out of questions to ask, and answers to give.

Are you okay?
How do you feel about what was said?

Am I okay? so few words with so many possible answers. This morning I woke up thinking; "Today is the day I find my answers". When in fact it was another dead end, when they told me I would be on painkillers the rest of my life. I did not laugh when they told me to "distract myself from the pain", like I would normally. Instead I felt nothing, I just couldn't be bothered anymore and with that I just sat a listened to the words and points being made on both the doctors side and my parents side. In one ear and out the other. All I could think was, What now?

So people ask me if I am okay? the answer is plain...I don't know. I have no more hope left in me to say " I will find an answer" As for how I feel. Tired.

I can't help but ask what I did to deserve this, was it not praying, was it turning my back on those who hurt me. Could it have been something In a "past life". I don't know. I have come to feel like I am being punished for being me. I do not think god favors anyone, but for those that do, it is not me.

I keep telling myself not to give up. My parents say over and over again "we will fix this", but it is hard to fix something that you don't even know. How can I say its gonna be okay, when I do not know what I am fighting.

Once again I am terrified. Not of me. Not of the past. Not of the future, But now.

I have but one question, what makes you fear this moment?

Kind Regards

Your Friend

Sunday, 4 May 2014

Sooner or later

There was a time I was like every other teen, I went out, had fun, danced, played sport and so on. Last night I went out and danced for a few hours....I had fun laughing with friends, Sang along to pointless tunes and Laughed some more. As the night progressed Instead of getting more and more restless; I became less and less active. Going to bed at 2 am and waking up just before 12 pm like every other teen. Yet I managed to slide slowly and painfully out of bed and make my way into the sitting room just before 1/2 past 12. This is agonising punishment for the previous evening. 

I miss the time when I could dance till my feet bled. I long for the days where I would stay up past 5 am and be fine in the morning. I don't run anymore; I don't swim. I simply sit and read. I simply sit and write. Sometimes I wonder if I will ever be able to do the things I love again. I wonder each day if i will be able to wake up in the morning after a short walk and feel like a young 16 year old girl and not over 72.

People say pain is pain, its not that bad. I say yes it is pain but it is the very thing that drains a man. It make you tired, it slowly makes you wonder why? And when all the whys have been answered you begin to cry, because all you want is to live a life without it.
I do not want to live my life on painkillers, and as we get closer and closer to a dead end that becomes more and more likely a solution. I will not live my life feeling distant from the rest of society, I will not spent my youth full of painkillers that send my mind on its own journey while leaving my body behind. If it comes down to it, I would rather live with the long term pain than spend my life barely knowing what is going on around me. 

I know that is is daft to think I could, but I believe that I should. Just because I have HME doesn't mean I should live half a life. I want to play Hockey, I would love learn how to ride a dirt-bike. I need to be able to walk my dog and play with my brother at the park. I hope to stay up all night at a party and not have to take a single painkiller; so i can enjoy the full company of my friends. 

Will that day ever come? I hope so. 

What does your condition prevent you from doing? ask yourself...can it be changed? 

Kind regards Your Friend 

Wednesday, 23 April 2014

Beast or Beauty? 

Today I went into school and was told by a friend I am beautiful and should see myself as such. Do I look in the mirror? Not if I can help it. I refuse to see myself as beautiful. After so many years of being told I am ugly or disgusting and fellow students gagging at me; I simply can't see past the words.
Why is it that people feel such a strong need to look good? Or maintain appearance?
I have never felt like I needed to look my best for school, I rarely put my hair up all fancy and use makeup to hide behind. Yet like everyone else I am never happy with just being me, with no make-up, no slim fit top or skinny jeans to try and keep the idea of being thin in my mind.
Why is it when a young girl sees a curve and goes straight to thinking they are FAT? I myself am guilty of this. I know I am not, yet all I see in the mirror is a huge mass. I find that it is exhausting trying to fit into the image the media and society has molded for me.
Thin, Athletic and in proportion.... (Picture a slim model on the front of a magazine) I am nothing like this. Not even the slim model is like that, yet we all try to achieve that so called perfection. Is it true that people who have been bullied are more likely to feel this need to match society demands? I have no idea. I don't ask others how they see themselves.
When I look at myself I am brought straight to my scars, I see them even when others cannot. Then my eyes move to my stomach and how it bulges out of proportion with my hips, dose that make me fat? or blind to what is really there? And so I enter into a time of starving myself as punishment for being me yet again. Then all at once the lumps and bumps come into view and I see just how odd and strange my joints are, how far my legs extend and how swollen my hips are from the constant pain and irritation.
I often tell people they are meant to be the way they are, they are beautiful and should not let people tell them otherwise. I know others also give this same advice, a mum or sister perhaps?  But have you ever stopped to notice that they do not take their own advice?
I am aware of my scars from my HME, and my weight, and everything else I have ever been made to feel is wrong. I know it is daft to dwell of the past yet I do so anyway. Harsh words stay, and often last longer than the knowing of the source. So my point is this, if you do not want to hurt another for the rest of their life then do not tell them they have flaws or should work on something. Instead tell them the good things and maybe one day we will see a day were people can feel good about being the way they were born. One day we shall see the plus size models on every cat walk, we will see someone with crutches smile at a compliment, or a person in a wheel chair think, "I am just as good as a man who can walk" because that's how it ought to be. We talk of equality, now it is time to bring it to life.
I do not want to see children laughing at their elders who have a limp; I do not want to hear the jokes about disability or illness. I am not one to make the jokes, but I hear them almost every day. People will always find a way to criticize another. Have you ever thought of how many jokes are being made of something as simple as having ginger hair? I have. Basically if people are not laughing at one thing they will find another.
I often find myself thinking why society has developed this need to discriminate, and judge? There is nothing good to come from it. Nothing to be gained but a short 2 minutes of laughter, then the person realizes they are in the wrong, and begins to regret what they said.
So you see, it does not matter if you have a condition, or a disability...if someone is going to bring you down then they will find the smallest thing, even if they too are the same. The important thing is, not to let the harsh words or hateful faces sink in and penetrate the way you see yourself. A condition is not you. An illness is not the end. A disability is a wall, not a cage. Learn to love yourself and others will soon know they can love you too.
I have to say, around my friends my scars don't matter. I can wear shorts...without thick black tights. I can wear short sleeves and loose tops because I don't care how they see me. I don't need to hide; I can relax because they don't see imperfection. They see me.
Ask yourself, who sees you...for you?
Your Friend

Sunday, 13 April 2014

Well this week I have had two appointments, one for my breathing and chest. Another for my hips. However I am doubtful that anything will happen. I have been to so many people, heard so many things and yet I keep going, knowing that 9 times out of 10 I will get the wrong answer, if I am to get an answer at all. This week I was hit with a blast from the past, I almost lost something, someone, that is very close to me because of the immense pressure my condition puts on the people I love and care for. I have lived my life in fear of people leaving me, of running away when times get tough. I do not blame them. I do not get angry. I have come to expect it. After all It is not my place, let alone within my rights to ask them to stay, and watch me battle from day to day.

Once every so often, I meet someone who see's me. Who knows my smile is fake, but who stays to support me anyway. Those are the people I love, They are the friend who I will have for many years to come.

After all, at the end of the day the strongest people, are the ones who stay to fight with you. No matter how high the wall. Some go and come back, because there mind plays tricks, some go but never return. It is those people that I never see again, I have learnt to pity; for their pain. Yet at the same time I envy them, because they have the power to go, to get away.

So no matter if who stays, or who goes...each person gives us something. Hope, that the condition is not the end of our story. It is just the plot-twist in the middle.

Remember no one is alone in the fight, someone will always listen to your story.

Kind Regards

Your Friend


Sunday, 6 April 2014

The Funny Things...

Have you ever sat back one day and just ran through all the other things, bad or good, and watched them skip around the inside of your mind. I seem to be doing that a lot lately. Sometimes all the thoughts are moving so fast I can never seem to find the focus to catch any single one. Then out of the blue one thought, one image,one idea: catches my attention, on those days I am not myself. I am sad.

Have you ever found yourself overwhelmed by sadness to the point you cant focus on anything, that it becomes your only thought. At this point you can do a few things...

1. You can keep the sadness inside...(BAD IDEA)
2. You can fix the problems one,by one... (If they are fixable)
3. You can do something to distract your self; dose not work long term...
4. Talk to your Friends... (WORKS)

Personally, I do all 4, it may not be the best thing to do, but for me it help. After all as you grow up, you develop thing to help take away pain, deal with anger or frustration. Battle disappointment and bad news ect... For me it is punishing myself, sometime even now, because that's what I did before. Lately though I have been crying, sometimes I don't even know the reason for my tear but more of the time I do. I do not punish myself as often though, I do not starve myself as much, I do not sleep the pain away...now I find a friend or sit up with a good book in my hand, or a bunch of paints at my side.

It is in finding these ways of coping with our sadness, our anger...that seems to sit next to having a condition, illness or disability that we travel through life. However I feel strongly that it it this sadness, this pain or anger that makes us all stronger...and ready for life. All we need is to find away to deal with all the thoughts or ideas one at a time, but never all at once.

Remember you are never alone in the fight, feel free to post your own story on the main page and I will listen.

Kind Regards

Your Friend


Wednesday, 2 April 2014

A lesson

If there is one thing I have learnt this week is things do get worse, but they can also get better. Sometimes I find myself in so much pain I no longer have the energy to cry, or walk to get my painkillers. Yet on those days all someone needs to do is ask, three simple words..."Are you okay?" I find more often than not than I lie and say "I'm fine" or "Great", but on that odd day I choose to tell the truth, and that person really dose stand in front of me, or sit next to me, and listen to my feelings. It isn't until I am finished they make a single, yet simple gesture of a hug.

I don't know what is it about a hug, but from the right person it can take away all the pain. It can fill that empty whole that has been stuck in your chest for days. It is this action of trust, love and respect that takes away even your greatest fear. The feelings you just shared seem to disappear with every breathe you take in and everyone you let out.

My point is, that even when things are at their darkest, take a moment to breathe, and remember your friends, your family and tell yourself you will smile again tomorrow. If it is someone you love or care for that is in pain or feeling low, don't ignore them, don't crowd them just wait and ask them how they are. If they tell you then listen and that in its self helps more than many will know.

Remember you are never alone in the fight, there is always someone who will listen. Feel free to share your story on the main page, and I will listen.

Kind Regards

Your Friend


Thursday, 27 March 2014


In this world, In today's society the true meaning of friendship has been lost due to the introduction of social media, and the race to have more "friends" on your Facebook page than your classmates. This action of adding a name to a list, is not friendship. After all how many of you really know each person on your page to the point you can trust them. Friendship means faith, loyalty and understanding of each-other, it has nothing to do with a handsome face next to a unknown name. I will admit I am guilty of not knowing some of the people on my list, of not even talking to them, they are simply names and an addition to the overall number.

However the friends I have, that have seen me at my worst and protected me when I did not have the strength to do so, they are far more than numbers, they are trusted. I am lucky to be in that rare position of loving my friends, but having fallen in love with one of my best friends. He now knows every flaw and every source of pain in my life. If I lock he knows exactly how to fix it, what to do and who to call.

To be able to chill and relax around your friends and not hide your pain is rare, but it is also a blessing. My friends have seen me cry, heard me scream while struggling to move as they help me to my feet. If they stay after such a reaction or "episode" then I know I can trust them, and put my faith in them when my body fails me.

These friends don't know how much I respect them and how much their simple actions mean to me. I doubt they ever will, but I will never stop loving them because they never ask for anything in return.

Ask yourself, who is your true friend? and what would your life be without them?

Remember you are never alone in the fight.

Kind Regards


Monday, 24 March 2014


What is it?
Who has the right or the wisdom to know what is normal?
Who has the power over others and society to set the image for perfection?

To be normal is to be born, to grow, to live and to die. That is the basic formula of every-ones life.
But what is it that makes a person say... "you are not normal" is it that you do not live your life in the same way as them or is it that you choose to wear different clothes while living the same life, while walking the same path. I do not know.

To me there is no such thing as normal.

Everyone is their own, everyone is different and nobody is the same. Everyone has a flaw and most have not yet reached perfection...for that dose not exist either. However I do believe in beauty, that is only found in acceptance of yourself. After all you are what you are, you have what you have, you do what you do, all of this makes you who you are, that is Beauty, and acceptance is the closest thing to perfection one can get.

Your Friend


Tuesday, 18 March 2014


I have never been under the impression that having HME was going to be easy. One of these paths I often think about when sitting in an empty room, or when bored during a lecture from one of my dad’s famous, "when I was your age..." speech is; children, marriage, and all the what if's? any other teenage girl thinks about in their spare time, for that matter any teenager thinks about.

In my case the "complications" are endless, negative outweighs the positive. For starters if I were to decide to have children then there is a 50/50 chance he or she could also suffer from HME. I have read about plans to breed it out of the genetic sequence. How you might ask? Essentially pre-picking your child, but where is the fun in that? I have seen how hard it is on a parent to watch their child grow up with this condition. On the other hand I know how difficult it is on the sufferer at a young age (if not through life) to be able to get to where I am and understand the reasons for peoples harsh words, and degrading expression’s. All this has brought me to come to the same conclusion more often than not that I simply don’t have a heart strong enough to take that kind of pain. Yet I still dream of a day were it will be, where I will be.

Moving on to the next “complication” as so many have had the guts to tell me. Due to the spurs on my hips (bones) there is a chance I could kill any child at birth. I often imagine the pain the child would go through, that small chance of the cruelty and suffering I could cause something so small. To say it upsets me would be to lie to you, as well as lying to myself: for you see it kills me.

Then there is the least painful of all the least emotional, and traumatising. I could die. It sounds so simple, so meaningless to me any way. For me family is everything, and most certainly worth me dying for. My VWD would mean blood, and a lot of it. My own mother almost bled to death bringing me into existence, but she did it anyway, knowing the risks.

Any partner I have will NEED to accept these “complications” for they are a part of my conditions, of me. If he does not then it wasn’t meant to be. I do want a child of my own (with all my heart) but the cost….the pain….and the risk, I fear might be too much for one soul to handle.

I would say that if your condition affects your future, if its kids or an experience, then there is only one question to ask….

How much do you really want it? How much do you need it?

This question might never stop haunting my thoughts, or lingering in the shadows of my mind. Then again it could be something that I need to keep me going.

Remember you are not alone in the fight; there are always friends close, even if you do not see them…

Your Friend


Friday, 14 March 2014


"Today is a new day, and tomorrow must be better than yesterday...."

There is no site more upsetting that looking into the eyes of a person drained of their hope. For in their eyes they hold the pain, the memory and their fear. When mankind has lost hope, when you loose hope, it brings you down so far you feel like your own body is creating a cage around you, you can't breathe, you are always thinking of why, why you? Why did god (if their is a god) give me this illness, this condition or disability....? 

I find this question is in the mind of many men, in the mind of everyone. I frequently ask myself this question, so simple, yet so complex.... 

Why is their pain? why is it only some people have walls in their path and others have none? The answer is...its complicated. In life there must be good, there must be bad..."ying and hang" so to speak. Some feel we are being punished by god for the sins of Adam and Eve....others feel they just go dealt a bad hand, there are so many reasons well tell ourselves as we fall asleep at night in our sanctuary. 

Is god punishing us? No. 
Is it down to luck? No. 
Is it he loves some more than others? No. 

God if he exists made you the way you are, why? because to him you are beautiful, to him you are the way he wanted you to be. Sure its hard but think, would you change everything to be without your condition? or would you still want to live the life you lead. 

To me the condition, the illness, or the disability is what makes us who we are. Without it who would you be? It has helped me so much, my illness has helped me see better, I can see the pain in others because I know it myself. 

Remember you are perfect just the way you are, and don't let anyone make you think otherwise, because there will come a day you see the beauty in yourself.

Nobody is alone in the fight, count on you friends and family, because they see you for you...

Kind Regards


Wednesday, 12 March 2014

There are many different ways someone can be Brave. Bravery can be in the smallest gesture to a loved one, Bravery can be seen in ones eyes when they look upon their child, Bravery can be shown through words or demonstration of ones opinion. 

Why is it people always say someone who suffers an illness is Brave? This question has been brought up a few times now, so I feel it would be best for me to answer. 

When people say this it is not directed at the pain, nor is it at the condition. When this is said, it is said to show the bravery of the person. For it takes their strength  and determination to go from one excruciating day to the next, to overcome the walls and labels they have been given. It is in doing so that a man shows true bravery, He shows his bravery in his perseverance to live. 

So I ask you, to ask yourself...are we not all brave. For something as simple as making a new friend, getting out of bed and going to work or putting on a smile, can be terrifying for this is a leap of faith, faith in ones-self, or faith in another. 

Remember you are never alone in the fight, there will always be someone there to help you or to listen. Feel free to share your story or feelings on the main page, and don't forget to dream, big dreams. 

Kind Regards

Your Friend 

Monday, 10 March 2014

Today, I have achieved so much. Reached so many people: got so much in Return. For the first time in a long time I feel happy. Not just happy on the outside, my smile is not false today, it is on the inside. I had forgotten how nice it was to feel important and how great is was to feel human. Despite the doctors not knowing the reasons for my pain, and why I cry myself to sleep and when I wake, today it does not matter. After all today I can be proud of this, I had someone else with HME contact me for the first time ever today in 16 long years. I don't feel alone or in the dark, I feel like I can breathe again, and that feeling, that sensation is intoxicating and wonderful.

I have been told it could take up to 3 months for me to be seen again by the right people and yes I was upset, and yes I might be feeling low tomorrow, but today, right now I am just so glad that I have done what I set out to do. I pray that I will continue to do so...because to help other truly is the best feeling one can experience.

Everyone should remember that they are not alone, that they are free to share their story on the main page on this Blog and inspire others, Everyone is made the way they were meant to be made and that makes them human, which makes them beautiful....
Kind Regards
Your Friend Jordan x

Thursday, 27 February 2014

Doctors Effect

Lost, is a word I could use but really this word means nothing. It only tells me the beginning: not the end. I have now reached the point where I have more answers than questions and those questions keep building up into a mountain, a mountain I can’t climb. There are no spurs on my ribs or at least so it would seem. In a way I guess that is a good thing, it means I don’t have to worry about cancer in that area…but now I am stuck in darkness, left yet again with no answers: no hope and in pain. The voices nagging at the back of my mind are telling me it’s all in my head, but I know there is something wrong; I just don’t know what. It feels as if all the air has been smashed out of me, where dose one turn when they know nothing?

To say I am scared, would be a lie…I am terrified. I don’t want to live like this. All I need is to be able to go out and leave the fear behind me. Not have to worry about my every movement. To fall asleep and know my chest will be functioning properly and able to move when I wake up (if I am lucky enough to fall asleep) I keep thinking that if there are no answers, then why should I keep fighting? It gets to the point where you become so tired of the pain, you stop feeling anything else. I am tired…of screaming into ears that refuse to listen. Unable to run, Unable to swim…my body refuses to allow me my freedom, Sometimes I wonder if I got my answers would that change anything? Would I be able to do the things I need to do? The things I want to do?

I am losing faith in myself, in the health care system and science, what is a man without faith? For that matter what is a life without aim and direction. You might choose to have faith in god, in yourself, science. I have faith in one thing and one thing only…family. For when I am in pain...they see it. When I cry…they cry with me. However when I am scared, they are desperate! So imagine what they are like when I am terrified?

To be young and to not know why you are in pain is difficult to say the least. However to be young and wake up unable to breathe and to be in a crippling pain, unable to slide a couple inches out of bed, that is when I found out the true meaning of fear, of desperation. I have asked for help and some have tried, I have asked for answers and received more questions…so I wonder what would happen if I asked for my life back? 

Remember that even though you might not get the answers you want, or you need...you could end up getting something more. For me I have added to my knowledge, I have learnt how to handle bad news. I know how to look on the bright side at the same time as seeing the bad. 

Nobody is alone

Kind Regards 
Jordan Bustard

Saturday, 15 February 2014

To reader:

There are many different ways to live your life. There are many different walls put in front of you throughout your life. Some people lose a family member, others a love but few have to battle against themselves and the misfortune of an illness. Having an illness is one thing, one big wall on the road through life; but not knowing why makes it a hundred times harder. It is at this point of not knowing you feel the most venerable and a wall gets built a hundred times stronger than the first. The key thing to remember is when it all gets tough and things start to spin into darkness, you are not alone, listen to my story and remember…

Every human-being, every man, every woman and child is guilty of is judging their fellow human-being.  In every work place, from a small nursery to a company there will be fear.
When I was younger everyone knew how to hurt me.  I remember getting home from school, going for a walk, (not because I liked walking or the wind against my face) it was so I could cry without anyone finding out.  When looking back, you might say I was in some kind of pain but not because I hated who I was, more how others saw me and how I let that influence me.  For most of my life I have had to deal with the cruelties of children, because most came to the wrong conclusion.  I can think of many examples such as “freak” or “squint legs”.  It is saddening to think that these are the choice phrases my fellow students could muster up, in many ways I am sure they lacked the “imagination” to improve their creativity.

Many people have informed me that they too understand what it is like, but the reality is very different; few truly know how it makes another feel when they are “different”.  To be told you should not be alive or to just go home and die makes you feel alone and you are forever hiding, it’s enough to make you dejected.  It is enough to make me cry because the sad fact is after a while you actually start to believe the punishing words been thrown at your ears; day after day.

In my case people didn’t “understand me” because of who I was physically, so it’s not as if I could help it.  Most didn’t understand what Hereditary Multiple Exostoses (HME) or Von Willebrand disease (VWD) was.  I know now that this terrible inconvenience scared them, and to tell you the truth, it scared me too.  If it were not for these people bringing me down and making me feel the way I did, I can say without a doubt I would be a whole different person.  So in a way I guess I owe them a thank-you because I would have hated to be the one causing pain for others.

My HME is very rare and not much is known about it yet.  Some find it disgusting.  However they fail to realise it won’t disappear.   I do have Hereditary Multiple Exostoses.  People tend not to think about how much I struggle to do things; they never have understood, but perhaps I ask too much of them to do so?  Some ask me why I was born.  Why not just give up? There was a time when I would have had no idea how to begin to answer them.  Now I can: it will make no difference, I will still have HME tomorrow.  All I want is acceptance; it’s only human after all.

I have often thought about a life without it, a life free of HME, who I would have become, and every time I decide I would not change.  Because it causes me pain and is challenging 99% of the time it has made me stronger. During the surgeries, I was scared (even if I was smiling), it wasn’t so much the pain I was scared of but the gossip among my fellow students.  I remember going into get my surgery; for me it was exciting, getting to see everything that was going on around the hospital. For others I was a freak. 

I like to think it has made me more prepared for the world, it has brought me out of the comfort zone I feel so many my age are caught in. An example of this would be a girl getting all emotional about breaking a nail or being dumped by “the love of their life”.  I know what it is like to have to fight for something; I have been fighting for years, only I have been fighting myself.  I know how hard it can be.  There were many days when I starved myself; there were other days when I just slept to avoid the different possibilities and misconceptions.  I didn’t sleep because I was tired; I slept because I was hurting.  It was the kind of hurt that consumes everything, the feeling of being rejected.  I would never wish that kind of self-hatred upon anyone. Not even the ones who hate me.

Growing up I was made to feel hideous, I was told to hate myself because i was “unique” but now I am proud of who I am, and ashamed to believe otherwise.  I don’t care anymore.  I have met so many people who have been in the same boat, but who still smile every day. You may be reading this and saying “what a cheesy thing to say” or you might just be sitting and asking yourself when to let a tear escape you, not because you are touched but because you have read so many essays of the same nature; and by this point all you want is a good cuppa.
So I will not tell you this is different to all the rest, because it is not.  I do know I would never have the strength to watch my child grow up with this, the way my dad watched me; because it consumes you. I know that every time my dad looks at me he prays to have the power to take the HME away.  If he could, he would take all my pain and bare it himself.

I could never have a child, knowing how cruel society is to children with special needs.  I have to say it’s not so much the pain of it physically but the pressure emotionally that drains your energy and without my dad there in my life for support, I would have given up long ago.  He suffers a great deal of pain every day, but still puts on a brave face for his family, for me. 
I am not going to say I have always accepted my differences, that would be wrong.  It is really only in the past year I can honestly say I feel good about being me.  I owe that to my closest friends.  They don’t see me as different, they don’t see my scars, and they see me for me.  That is a gift truly underrated.  They think I am beautiful and some days, just for a moment, I believe them.  It has taken many years to feel accepted.  It is one of the best feelings in the world, one which many take for granted.  I don’t have to hide like I used to.  I can be what I want to be, because now there is nothing to prove, for the first time I have friends. They love me for my HME. 

So you see you are not alone, even if some days it feels that way. It is when life puts these walls on our path that people truly see, that you truly see what makes us human and what makes you human. The most important thing to remember is to fight it, fight the pain and the judgments after all at the end of the day only you have the power to hurt yourself.
Now I don’t know what point in your life you are at, I don’t know what conditions you have, and I don’t know how you feel. Why, because I am not in your shoes. I am just me, and I am scared, maybe you are too. I know that doctors don’t have all the answers; that I accept. I will however not accept people like me; with special needs feeling like nobody cares. So if you are one of those people, someone like me, or are close to someone with a illness and just need someone to hear you out then please send me a message, share your story on the wall and I will listen, and maybe just maybe you won’t feel as alone.

 Your friend

The Beginning