Saturday, 24 December 2011

Happy Chirstmas!

Around Christmas time, I cant help but remember being diagnosed with this disease. Four years ago, I was so unwell. My Christmas dinner was so tiny, I didn't have enough energy to decorate the Christmas tree - I had to sit down between each decoration because of the pain. We all knew something was very wrong but we didn't know what it was. We still carried on with Christmas.

This is my fifth Christmas with Crohn's disease. Two out of these five I have been unwell. The last couple of months I have been expecting this Christmas to be the same, because I was not feeling well. I have had a lot of pain recently, stronger pain. The Blood tests have shown my inflammation is only slightly raised, so the doctors are not keen to do much about it.

This lead me to try the low residue diet. The theory is that anything that is high in insoluble fibre - the parts we do not digest, will cause pain to the area's which are already inflamed and sore. The basis of this diet is to switch to white bread, pasta and rice. To remove skins from fruits and to cook vegetables well, and to avoid seeds and nuts.

I believe that this diet has improved my symptoms, and I have not been feeling as much pain or going to toilet as much. Soon, I will start trying to re-introduce foods that I was previously eaten, maybe switch back to brown bread to see if this makes me feel worse or if I can handle it.

I know that a lot of people with Crohn's disease worry about food at Christmas. People tend to eat a lot, and a lot of rich foods. Maybe, this is something that those of us with this, or similar illnesses just know without needing to think about it. (I don't know how 'normal' people think). Sometimes just looking at rich foods give me stomach ache. I always crave plain things, with not much flavour. Cold yogurts which I imagine is cooling down my intestines. Most people feel like Christmas is a time you can really indulge and not have to feel guilty about it, and for those who usually try and stick to a healthy diet, its nice to have an excuse to eat the things you normally wouldn't! I think that is something people who are not well still really want to do at Christmas, and if it is an occasion when we are unwell, it can really bring things down.

However, Christmas is a time to be thankful for everything that we have. To spend time with family and friends, to celebrate life - whether or not you are religious. I am pleased to say that this Christmas, I will allow myself to indulge! I feel happy that I can remember that Christmas four years ago and see how far I have come. I am still fighting, But I am learning more and more about my illness, I am realistic about the life I can lead, and the goals I can achieve!

I wish everyone a very happy Christmas, and a wonderful new year! I hope your 2012 is happy and healthy, and you achieve your goals and dreams!

Disclaimer - I am not recommending or advising anyone to follow the low residue diet without the help and guidance of a medical professional. I am a Nutrition Student and understand the risks I am taking, and do not plan to make these changes long term. I will also tell my doctor about these changes I have made when I next see him. Please remember that everyone with Crohn's disease is effected differently, and anything that works for me may not work for someone else. If you need help controlling your symptoms, please talk to your specialist.

Tuesday, 13 December 2011

I like watching cars drive past

         In the rain and the dark
                      while I'm warm in my house....

Wednesday, 7 December 2011

Erase and rewind, leave that sick girl behind...

You live, and you die.

So whats the point in it all?

Its scary how easy it is for me to think about giving up.

The thing is, I can't. 

This is it. This is what I have to do. I don't have a choice.

And maybe thats the hardest thing. I don't get to choose.

So, I don't think I'm brave. I don't think I'm special. I don't think I'm any more deserving than anyone else. 

I would like it to go away now.  But it wont.

I just have to wait for my next remission. Or my next pain less day.

I look forward to you.

I'm waiting for you.                fast forward

We will have a good day :) 

Please come soon.  

Saturday, 3 December 2011

What doesn't kill you makes you stronger

Keep fighting, and you can achieve your goals. 
That feeling of achievement is what you have to fight for.

Wednesday, 23 November 2011

Happy now I'm on happy ground

This is me:

We were on the ferry going to France. I was excited about going on holiday, I was 17, happy and care free. Me and my sister decided to wear big dresses that would blow in the wind, and spent the majority of the journey laughing while we tried to not show off our knickers to the rest of the people on board.
Can you tell from that picture that only six months before I was at my darkest time? I was 5 1/2 stone, I couldn't eat, in constant pain and fighting for a diagnosis.
Here, I am in my first remission. If I remember correctly, it lasted about 10 months. I can't even describe how it felt. To come out of such a darkness. It was during this time I met my first boyfriend and he fell in love with me.
This is what I fight for. Even when things are bad I will remember this feeling, its ok to be down because it will be so much better when I come up.
This is the gift I get out of this curse. And I captured it in this picture to never forget.

Monday, 14 November 2011

Trust your breath in me for a moment, we'll lose the world

I go through phases when I'm fine with my illness and when I'm not. Usually the worst time is when I start feeling unwell again after a period of remission.

I find myself wondering what it would be like without it, and remember how unimaginable I find this.
People sometimes do crazy things to try and escape their problems, and it doesn't make them go away. Sometimes I have the urge to run away, just to hide for a couple of days. But my problem is me. It will follow wherever I go.

The closer someone gets to me, the more they see the real me I hide beneath my false thick skin. And even though part of me is aching to let someone else in, I find it so hard. It is almost impossible to break my constant pretense of being 'normal'.

It gets to a certain point, when someone sees so much, I can see it hurts them too. Its like I am capturing them and pulling them into this web of pain and sadness.

And this is the part I hate the most. I want to let them go. They should be free of this, and they are. I find myself watching people decide to stay or go.

A lot of people do go, though sometimes I don't think they realise it. They stay close but distant, they chose to never properly understand. They only see the girl on the surface. I don't push them away or pull them in. I envy these people but its not usually an angry feeling. I see them as light feathers, floating away in their freedom, their innocence of the darkened corners in the world. It almost makes me happy to see it.

Its the people who stay I don't properly understand. That they would choose this to be part of their life. That they would stay in the gloom. I am so grateful to them, they are obviously the people who care the most, and in fact, they are the people who help me bring in some light. They can see a lot more of me than I can. They can see the part of me who is a 'normal' person, with interests and hobbies and passion, as well as the struggling girl inside.

For me, everything is a cloudy muddle. I see both girls, struggling to come together as one, with disease sticking its head around every corner. Everything takes its turn in dominating, and probably balances out overall. Sometimes I have to force myself out of my head, to remind myself I'm still real and alive. I have to smell the air, and feel the cold, and see the flowers and hear the music, to clear my head and remind myself, everything is actually so tiny and insignificant.

Wednesday, 2 November 2011

I'll keep on spinning untill I find myself again

I don't even know how to start this post.

I am tired, I am weak. I suddenly have this feeling of the whole world spinning around me, and time is zooming past while I feel like I am only looking out of the window for two minuets. I have stopped while everything else keeps going.

My mind feels like a big fuzzy cloud that I can't clear. I can't clear it enough to think about what I have to do. I find myself watching a yellow leaf blowing on a tree, and I don't know what I have been thinking about. I watched a heron by a stream, and wondered what it would be like to be him, while people around me talk about things we have to do.

I am yet again reminded of how easily people forget I am different. I pretend to be like them, obviously it works. They don't see how many more things I have to think about. But right now I can't think about anything.
I think people think I am lazy, but they don't see how hard I am pushing against walls in order to get things done.

Sometimes, I just can't. And that's what people don't understand. The inability just to get something done.

Friday, 28 October 2011

Why do we feel like we belong in these houses?

Its a beautifully cold clear night tonight. I can feel the coolness against my skin and entering my lungs. It feels good, and I watch my breath as I walk. Its quiet, it feels like the world is still, or that everyone is huddling into their houses. I feel like I am the only person in the world, that I will keep on walking and buildings and cars will jump out of my way.

There are only a few stars as it has only just got dark, and they are starting to peep out from behind the light.
I want to keep walking all night, and the night to never end. Just following the glare from the streetlights shooting up into the night sky. Maybe I could walk all the way home.
And then all too soon, I'm in the bright, hot kitchen. And the beat from the radio is banging hard against my head.
I want to be alone, and floating through the silent night sky.

Saturday, 8 October 2011

And our lives blow about like flags in the wind

On Wednesday I went to see Brooke Fraser with my sister and my cousin in London. Its the third time I have seen her, and it was definitely the best time. We had front row seats so an amazing view of her. It felt so amazing to be so close to her.

I have always enjoyed listening to Brooke's music and can play a couple of her songs on piano and ukulele. But for some reason this time I just realised how amazing she really is. She says that she uses music to express things she can't with words. Things that worry her or make her happy.

She introduced flags by talking about how it means different things for different people. That its about how we struggle through life as human beings. And as she explained it I thought 'everyone struggles, its not just me'.

And as she played the song the whole room was filled with emotion and when I looked at my sister she was crying.

It made me think about what music does for me. How it lifts me up even when I'm not sad. The best sort of songs are the ones which really mean something to you, that really hit home.

'You who weep now will laugh again, All you lonely be lonely no more'

This is the only video I can find on youtube from that night, she is playing Albertine. A beautiful song about a young girl she met in Rwanda who survived the genocide. She promised she would spread the word. And she has. 

Thursday, 29 September 2011

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.

Sunday, 11 September 2011

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.

Sunday, 7 August 2011

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.

Sunday, 26 June 2011

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.

Sunday, 5 June 2011

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.

Saturday, 28 May 2011

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.

Thursday, 26 May 2011

'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 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

Tuesday, 24 May 2011

I can feel it. We're falling through space, you and me, clinging to the skin of this tiny little world, and if we let go...

Sometimes I feel like I’m spinning. That the whole world is spinning faster and faster, and you know when you stop you are going to fall.

I realise that my blog seems to have started off fairly negative. I don’t mean for things to go that way. I think it’s just to do with my state of mind at the moment. But some posts do have to be a bit that way. Because the point of this blog is to be honest. 

When you see me to my face, you don’t always see how I’m feeling. You see the coping method. I think it makes perfect sense. In nature, if an animal is weak it is an easy target for predators. Sometimes, it will get pushed out of its group because the others can’t risk falling behind. So if they need to stay with their group then they need to act like nothing is wrong.

And this is what we do. You can’t always act like a victim. Even if you feel rubbish, you can still pick yourself up and go to work. Do your nine hour shifts just like everyone else. Even if you are pushing yourself harder than they are, you can easily not show it.

I find it so hard to act unwell. And that’s why it annoys me so much when other people lay it on thick. They have a slight headache and have to go home. A little bit of stress and its all too much. Try being me. If I gave them my pain for the day they would not be able to cope. 

Sometimes it doesn’t do well to hide it so much though. When it gets to the point where you need the help, or the exception, they don’t believe you. They don’t see how bad things really are.

I still don’t know how to get the balance. How to be positive and negative at the same time.

Monday, 23 May 2011


I hate doctors.

I hate the way they think they know everything. They have this sense of power and they are in control. They make you feel like an object. Like a problem they need to solve. 

Generally when I say this, I mean G.Ps. Ok, so they have studied for a long time and they have PHDs. But really, doctor’s offices are like a glorified sorting office. 

They get you in and out on your way as quickly as possible, sending you off to the appropriate place. Whether it be the pharmacy to get your antibiotics, the hospital for tests or to see a specialist.

Or home again to suck it up and carry on.

I know I am generalising. There are good doctors and bad doctors, and each person will have a different opinion on which is which. 

You could see hundreds of doctors who would all say the same thing, and then one day, you could see one who will finally offer you the solution you have been looking for. Who will at last bring light to your darkened world. Someone who actually understands, who sees people like you every day, and will offer you back your life.

For some people though, they do not get that chance. They might not get a diagnosis until it is too late. Or their doctor may not give them any good news. This is important to remember, because there are people who are a lot worse off than me. I am lucky. You have to think these sorts of things to get you through. It can be too easy to get sucked up into your own world, and forget about what is going on outside

Sunday, 22 May 2011

I didn't say all the things that I wanted to say

When I decided to make this blog and focus it on someone living with a chronic illness, I assumed I would make a post explaining Crohn’s, and then one on how I got diagnosed. But now I don’t think I will. I will do one soon on exactly what Crohn’s is and how I am affected. But I don’t feel like I can do that yet because it is something I find hard to talk about, even on here.

It is something that everyone who has Crohn’s struggles with. How do you explain this? How do you put across to people the way it completely turns your world upside down? How it changes you. The pain. The stigma attached to the symptoms. The worry, the stress, the blood tests, the doctor’s visits, the anxiety of what is to come.

The misunderstanding.

The feeling of being completely alone, in this world of doctors and medicines, and magical solutions which will help you live a relatively normal life. 

But they don’t teach you how to deal with it.

They don’t teach you what to say.

And it is so difficult because it is so important. It is so important that people understand. That they take you seriously and see what you go through, but they don’t pity you, and that they don’t find it disgusting, that they don’t see you as weak and struggling, but stronger and a better person for it.
And how do you get all that across to the stranger who asked, the possible new friend, the old friend, the boss, the teacher, the family, the boyfriend?

You have to learn the hard way. You have to get knocked down, and pick yourself up, and try again.

Saturday, 21 May 2011

I don't want to be open, I wanna be a photograph underexposed

'I'm a bird that cannot fly'

Ever feel like your lost? Like its foggy and dark and you can't quite see where your going?

I'm a naturally quite person. And I hate the drama, I hate the attention even when its not on me.

My natural reaction is to shut down. Just back away and stay out of it. I don't like having to be the sensible one all the time.

Its at times like these more than ever that I just want to get out. I want to run away and go to a beautiful place, meet new people and have adventures, only having to care about me.

If I had the money, and if I ever get the money, I will go to Australia for a year. Make new memories, experiences that I will never forget.

Right now I feel trapped, and I want to get out more than ever.

Wednesday, 18 May 2011

Time passes. Even when it seems impossible...

Time passes, and things change.

Sometimes, they are small changes that you don't even see untill you look back. Sometimes, they are big changes that you know will effect you, even if you don't anticipate the domino effect it will start.

Sometimes, they will stick with you for the rest of your life, and you will never be able to imagine what it would be like without it.

Thats what it was like when I was diagnosed with Crohn's Disease three years ago. It comes into my mind so often that I find it difficult to comprehend the times it wasn't there. There are so many things you have to think about, and everyday I take the medication that keeps me alive.

When things change you have to learn to adapt to them, at first I imagined a little monster inside me which made me hurt. He had big sharp teeth and claws and if I did something he didn't like he would hurt me. My medication would make him weak and me stronger, and that is how I would keep going.

Now I don't think of him very often, a while ago I thought of it like this: Three years ago I was supposed to die. This disease had caught hold of me and wasn't letting me eat. It was going to keep hold untill I got too weak to keep going, and eventually starve me to death. Then modern medicine came along. They said, we cannot cure it, but we can keep it away. So now I'm fighting this battle everyday. Modern medicine is keeping me alive. If I stop taking my medication I will get worse again. Keep taking it, and I can live a relitively normal life.

Sometimes, I don't know if this is a blessing or a curse.

"Death is peaceful: easy. Life is harder"

But there are the things in life that keep you going, that get you through your bad times. Your freinds, your family, this amazing world we live in!
Music! Music can make you feel so alive! 

I know I haven't expalined what Crohn's is yet, I will explain this at a later time. 

Saturday, 14 May 2011

Welcome to my Blog!

So, I’ve decided to be another one of those teenagers (Oh god, I keep forgetting I’m not one of those anymore!) Another one of those people to start a blog. Another one of those people who think that random people out there actually care about the thoughts that go through my mind from day to day.

The main reason I have started this is because I have got inspiration from reading my sister’s blog. This is it: I think people should read it, its probs better than mine is going to be! She was the one who suggested I started one, she says she finds it therapeutic.

I hope that my blog isn’t going to be one of the many out there which people write completely about them and their selfish little boring lives. I hope that mine is more like how I find my sister's, enlightening, inspiring, sad, sometimes funny, but above all hopeful and honest.

I promise I will try to keep my posts short and sweet as I know I have the tendency to ramble. So I hope if you are interested you will follow me on this journey, however short or long. To read the thoughts at times I can get out this way, which I would never be able to say out loud. To take a glimpse inside the life of a girl taking the steps she needs each day to fit into normality.

This will be a blog about me, my laughs, my cries, my thoughts, my illness, my struggle, my life. I am naturally an optimistic person, so I hope this will come through!

Thanks for reading, and I hope you will come back and visit again!
Holly :)