Using Your Headphones to Drown Out Your Mind

I was holding it all inside me for so long, trying to be brave. But then he was telling me things that I didn't want to hear. And suddenly I couldn't keep it in anymore. When you don't want to cry in front of someone its so hard not to. When you feel the tears coming up and the emotion inside and you try to push it down.

I must have been pushing it down for too long.

And then I couldn't stop. And all the way home I couldn't stop. And I went and sat in a nice place because I couldn't face talking to anyone yet. And ever since, even though I'm trying to carry on as normal and act happy, I have just had a deep sadness inside me.

And its just because I don't know what to do. I wasn't happy with how things were before, but it was out of my hands. I was getting pushed in different directions and all I had to do was let them push me.

And now suddenly that's all changed and its my decision. There is never going to be a right time for this, but I don't know what is right. My guidance has left me, different people tell me different things and I don't know what to listen to or what to believe. I want everything over and done with but I cant make that happen.

They have given me all the power, but I'm powerless.

And the same day they do this to me, they also practically give up on my sister. It just makes me so angry. They think they know everything and that they have almighty knowledge, but the minute they don't know what to do, they give up. It's like, because they don't know, it isn't an issue. 

And I can't stop these thoughts from going round my mind.

9/11/2011 My Thoughts and Reflections

So today marks the 10th anniversary of the attacks on the twin towers in new york. This was an act which shocked the world. Everyone you ask can remember the moment they found out about it.  My Dad heard people talking about it during the day at work, my Mum then heard from my dad when he got home and saw it on the news.

Me.... I was ten years old. I don't remember hearing about it through my parents. They must have not known how to explain something so horrific to an innocent child. I heard about it at school. The staff must have thought it was necessary to address the older children so we had a special PSHE lesson. I remember sitting in the circle, and children asking questions and talking about their worries, and I didn't know what they were talking about. I remember asking my mum that night what a terrorist was. I cant remember her answer.
And I'll be honest, I have never thought about it in much detail since. I have seen programmes on it... and understand what happened. But it hasn't been until now, ten years on, when I have truly accepted the horrors that day had in store. For the people on the planes, the people in the buildings, the emergency service staff, and of course, the families left scarred from this act of terror.
It really was a day that changed the world. It is only in the last few days, when thinking of these groups of people that the thoughts of this day has bought tears to my eyes. I was too young to understand at the time... but now I can.
And as for my thoughts on this, my thoughts on terrorism, I'm not going to pretend I completely understand all the political issues behind it, I don't regularly watch or read the news. And as I said before it has been hard to think of it in much detail. But from what I do know, I feel so sad that a group of people can feel so strongly about a set of different beliefs to go to such extremes. Do they not think about the individuals effected the way I do? I literally can not understand how this could be the answer. How can anyone ever wish that pain upon anyone.
The way I see it, no one had the choice to be put on this world. No one had a choice which family, which country, which religion or which culture we were bought into. We were all brought up with unique life stories and unique points of view. But why does any of this matter? Why should another person thinking another thing bring any troubles? At the end of the day, we have all been given choices, whether or not you believe in a God, if you think everything has been put in its place for you or not... you still have to make that choice.

Last night I went out with my friends from work to say goodbye for the new year of uni. And somehow I felt deceitful. Anyone following this blog, or any close friends will know what is going on in my life health wise at the moment, and what I will be facing in the next few months. But I haven't told any of my friends at work. And that isn't because I haven't had the opportunity... I've had plenty. I just cant bring myself to do it! I don't want to talk about it, I don't want to answer questions. I don't want to face the reality yet. It's been nice to pretend nothing out of the ordinary is going to happen. And I guess... I've always known I was going to step away from work. But I have friends there, good friends. Who I want to let in on my problems. For some reason, at the end of tonight I felt as though I was hiding a big secret. I wanted to tell them but I couldn't. It definitely wasn't the right time but I still wanted them to know. And I felt sad. I was close to tears because of what is to come and because of feeling alone. But as we walked down the street, in the pouring rain, at two o'clock in the morning, and I looked up at the sky. I thought... I'm alive. I'm alive and I can feel it! I can feel the rain on my face, and the pain and fear in my heart. But I'm alive, right here and right now, a tiny person in this big world.

I guess life is a test.... different people have different rules. People live their life as they think they should, or the only way they think they can. There is so many people on this world, each with their own idea. How is it possible for us all to get along? I just wish more than anything we could. I wish we didn't have to live in fear of the future. I'm scared of the future. I'm scared of what the next corner is going to reveal. None of us know what is going to happen, what life we will be looking back on when we die. But, I'm young, I'm alive. And I have chosen to live my life based on piece, and honesty, and love. And I hope it gets me to where I want to go. I want to look back and be proud of who I am, and what I have done. There are always going to be struggles, and ups and downs. But they are what makes me who I am.

Looking For a Saviour Beneath These Dirty Sheets

There is something about clean sheets which is so pleasurable. The smell of the washing powder, the feel of the cotton on your skin. The feeling of being happy and comfortable just before you fall asleep. This is how I will feel tonight when I go to sleep. I'm very tired from a night out last night, so I will fall into a blissful, deep sleep and dream of far off places, distant lands and people that will never really be.

I try to live my life one day at a time, and not think too far into the future, as you never know what the next day will bring. But at the moment, I'm finding it hard not to think of the way my life will be in a couple of months time. It will be the opposite of how I'll feel tonight. I will be in bed a lot of the time because it will be uncomfortable for me to sit.

But bed isn't nice when you are in there all the time, when your too hot and the covers get loose, your too uncomfortable to move or to sort them out or even sleep, and your so tired that everything is so frustrating. I know what my life will be like. I will fall into the pattern which I so often feel when I'm not well:

Waiting for the days to pass, and the nights to end. Watching and waiting for time to go by.

Look down, the ground below is crumbling

I haven't written a blog post in a while, so thought I should do one. I have been busy the last couple of weeks, with finishing exams and then I had a week in Bath doing lots of fun things. Then I have come home for summer and have already started back at work.

There are a lot of things that are making me happy at the moment. I am in a good place. I have bought a Ukulele and I am putting a lot of effort into learning that. I feel refreshed after having a few weeks of not working and doing things I enjoy.

However, there are also a lot of things that are getting me down. The main thing that I have been pushing to the back of my mind is what I mentioned in my last blog post. I have been told that I have to have an operation to remove an abscess. It is about two inches above my anus in the natal cleft. It is not something I have found easy to tell people about, because I don't really understand the impact it will have on me.

I decided that I wanted to have the operation when I go back to Bath for university. This is because I think it will only effect me physically. And right now I need to work. I need money to pay my rent and to get out of my overdraft. My work as a waitress is very physical and I don't think I will be able to do this after the operation.

People don't seem to understand this decision and think I should have it at home where my family are here to look after me. But I don't think I will need looking after. I can't comprehend the idea of not being able to carry on as normal. Because that is all I have ever done. When I was at college and the most unwell I have ever been in my life, I still went every day. The only time off I ever had was for hospital appointments, and this was during my diagnosis.

I know that things will be harder, that I will be in a lot of pain all the time, but all I can do is push through the pain and carry on. I don't care if I will miss university for a couple of weeks because it isn't actually the most important thing in my life. The most important thing is that I have this operation and get better. I will catch up with my work and I won't let it jeopardise my grades. I will get extra help with my work if I need it.

And I have to think this way because... Otherwise I don't know what I will do.

Today I don't feel like doing anything...

I just wanna stay in my bed!
Today I am feeling rubbish! I am in the middle of my exams, I have my second one tomorrow and should be revising. I have done a bit today, but not as much as I would have liked because I am so tired!

Another reason is because I am feeling ill. And its annoying because It is not to do with Crohn's. Actually it is. Crohn's gave me a problem and in trying to fix it, I am feeling worse than I was originally.

I don't want to say what my problem is right now because in real life I have only told three people. I am waiting to see a doctor on Monday who will make a decision, until then I am trying not to worry about it. From past experience I think I know which way things will go, but I am not particularly happy about either outcome.

In life, we make decisions which will effect us forever. Sometimes we are forced in one direction. We have to do things we don't want to do. This is part of growing, and having new experiences. There are a lot of people in the world who constantly avoid making these tougher decisions. Being a person who falls into the category of being forced into things (by this I mean medically), I tend to see those people as just avoiding responsibility. I sometimes forget to think about the reasons behind why people make these constant wrong decisions. Is it because of their state of mind, their financial situation or the way they have been brought up? Maybe we are always forced into our decisions, even if it does seem like we are taking the easy way out. Because, does it really give us the easiest outcome?

I am a logical thinker, and doing things which does not seem to be the sensible thing to do makes me feel very nervous. But is this restricting me in my life experiences? Sometimes you have to take a gamble, and push yourself in the other direction.

But I think this needs to be saved for another time. For now, I will continue to be pushed by my doctors, into the things that I don't want to do, to try and get better. Besides, what doesn't kill you makes you stronger, right? That's just what I have to keep telling myself.

My Blog Title

My blog title is something that I have known for a long time. And its something that helps to get me through. When you have been so unwell, at a real low point, like I was before I got diagnosed, you don't realise how bad things are/were untill you feel good again. And the good feeling, with all that negativity just behind, makes the good times even more amazing. They wouldn't be that good if I hadn't been so low.

'You wouldn't know joy if you didn't have pain' is a lyric from the song 'How could I complain?' By Pete Lawrie. I discovered him first when my friend had a spare ticket to go and see The Feeling. I went along with her, not all that bothered about going but came home so pleased I did! Pete was the supporting act and while he was on stage, I felt inspired by his voice and his songs and his lyrics. We went down to meet him afterwards and buy a CD and I felt really shy and couldn't really say much other then hello and I would like a CD and my name.

When I got home and started listening to his music more I started to feel so connected by some of his lyrics. To hear someone else say 'You wouldn't know joy if you didnt have pain' gave me the perfect words for what I had been feeling all this time, and a little bit more light came into my world, which is fitting as his album is called 'A Little Brighter'. We are so good at being negative about what we have in life, we forget about the good things. That is what this song is saying.

Another one of Pete's songs which really reaches out to me is 'Fell Into The River'. Sometimes I feel as though I am the girl who says 'Life is lost and can't be found' and that Pete is singing just to me. 'Oh my word, its absurd that you wont let the bad times go' It is important not to let the bad times consume you. You have to move on and look for a more positive way to lead your life. But it is important not to forget them, as they change you and define you. Songs aren't just about the words and music. They are about how they make you feel. Whether they make you dance or sing, or make you feel alive. The song is quite upbeat and its like he is trying to show her what is good in life

'If you fell into the river, I could help you get back up' I really want to find that special person who understands me, and will help to pick me up when I fall down.

'I have Crohn's Disease' 'What's that?'

I think this is going to be a long post! But it is important!

Biological: Crohn's Disease is an auto immune disorder. This means my body doesn't realise my digestive system is part of my body, so it tries to get rid of it. (I have had someone laugh at this point, It is not funny!) This causes inflamation. This can occur anywhere along the digestive tract, from the mouth to the anus. It is catagorised as a type of Inflammatory Bowel Disease (IBD, Not to be confused with IBS).

Symptoms: Diarrhoea, which is frequent and recurring. It can often contain blood and/or mucus. Abdominal pain and cramping which is usually worse after eating. Fatigue, weight loss, malnutrition, aneamia, nausia, vomiting, joint pain, inflammation and irritation of the eyes, skin rashes, mouth ulcers, abscesses and fistulas. These can occur in any combination.

Question's I am often asked: Is it contagous? No, don't worry you wont catch it. But I'll try not to breathe on you if it makes you feel any better.
Is it fatal? No. well actually there is a posibility I could die, but it wouldnt be sudden, you would have been aware of me being unwell for a very long time before it got to that point.

I got my first symptoms in about July 2007. Started off with a lot of mouth ulcers. By Christmas, I had frequent diarrhoea, with blood, stomach pain, which would come in short bursts regularly, I could not eat, I was 5 and a half stone, I was aneamic, I got night sweats. We were constantly at the doctors, a couple of times each week trying to get them to do something. I was at first told to 'eat more lunch' but eventually they realised there was something very wrong and I got referred to a specialist in Jan 2008.

Diagnosis: I had frequent blood tests, an ultrasound, a barium follow through (Where I drank barium and they watched it pass through my digestive system on an x-ray) and a colonoscopy.
I was diagnosed with Crohn's Disease in March 2008.  I was lucky I could use privet health care with my dad's work which got me through diagnosis quickly.

Treatment: I started off on sterioids. They are horrible. People always make the joke about getting muscles and being like a body builder. No, they are anabolic steroids, they are illegal and not prescribed to anyone. These are cortico steroids which are used a lot in medicine. They are like a wonder drug. When you have been so so ill they make you feel alive! They give you energy, an apetite and a normal life again. They also give you osteoporosis, a fat face, mood changes, mania, and a weak immune system. Your body becomes dependant on them so you have to reduce the dose slowely, which means you are on them for months at a time, and I believe I have suffered from withdrawral symptoms once off them, like being sick.
I have also been put on Azathioprine which is an immunosuppressant. The idea is to weaken the immune system to stop it from getting me! I have had issues with this drug. At first I couldnt take the full dose due to a lack of an enzyme in my body, making me again lose my apetite. I have to have regular blood tests (At the moment every other week) to make sure it is not effecting my liver or my blood counts. In the past it has, which has ment I have had to come off it for a while.
Another drug which I have taken a lot of is Pentasa, or mesalazine. I love this drug. Its an anti inflammatory. I came off it for a while when I was doing well. But went back on it when I came of Azathioprine. I don't think it gives me any negative side effects.
There are many other drugs out there, and finding the right treatment can be difficult. I was lucky I found something that worked so well.
Often people need to have operations. This can mean removing part of the digestive system. My biggest fear is to have a colostomy. Where they take out your colon and leave you with a stoma, which is a bit of intestine they re-direct out of your abdomen wall. Although I know this is a last resort, and if it got to the point where I needed one it would improve my quality of life.

There is no cure for Crohn's Disease, I will have this for the rest of my life. I will go through periods of remission, where I have no symptoms. But that does not mean I am better at all. I will still be taking medication, which if I stop will make my symptoms re-occur. This disease is unpredictable. I might be well for several months and then suddenly feel really bad. I might be feeling fine all day, and then suddenly have a stomach pain so bad it is hard to stand up, and consequently have diarrhoea, then be ok again.

I now don't find it strange to have diarrhoea, I know it means things are not right but if it is my only symptom it doesnt bother me. I find it strange that most people don't get it very often!
I have had some people seem quite outraged that my doctors ask me about my poo! Well how else would they know how things are?? Yes it is not a nice thing for a young girl to talk about but this is not a nice illness!

Hearing people's reaction to what I have is the worst thing... This is my life. This is what I go through all the time, and some people would rather I didnt talk about it! Well I am sorry to offend anyone!
People need to know, becuase the more people that don't makes it harder for people with crohn's to live with it.

I have to see my gastroenterologist regularly so they can keep track of my progress. If I am well my disease does not effect me too much. I get very tired, and I often have stomach pain, but that does not stop me doing anything. I know I just need a lot of sleep. And there isnt anything I can do about the pain. I don't take pain killers for it, even when I am at my worst because otherwise how do I keep track of how well I am?

Ok, I've spoken a lot now so I think I will leave it... I hope I have helped you to understand Crohn's Disease and how it effects me. If you want to find out more www.nacc.org.uk is a good place to go. Also talks about Ulcerative colitis which is another type of IBD.

Thanks for reading this post, it is quite personal but I believe it is better to talk about it so people understand. :) x x x