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

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.

Doctors

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

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.