Long time no post!

Wow, I can't believe how long it has been since I last posted on here!
My reasons for not posting for so long? I guess because life has been moving on for me. I am on my second job since I last posted and that of course keeps me busier. I started Infliximab in March this year and have since had six treatments. I am generally doing well health wise and I suppose with less drama, it gives me less reason to vent my feelings onto here.

But I think it is still so important to post about the good times as well. To show that I really have reached the light at the end of the tunnel - I expect there will be many more tunnels to pass through in the future but I know and have accepted that is what life is like. 

But the title of my blog rings true even more now that I am in a good time. I know that I can appreciate it so much more not knowing when it could all turn around. Something I learned in my first remission five years ago.

I have been thinking about how much things have changed for me in the past year. I was unemployed, had no social life, was about to become very unwell and have surgery. But I have got through all that now. My health got better and that gave me strength to work hard at my job.

I don't really believe in fate, but I really believe that things will work out in the end. Sometimes it feels like you are going along the wrong path, but you don't know where it is going to come out at the end. When you don't get a job you really want, or you are feeling down for any reason, its hard to believe that something better is around the corner. But you just have to be patient, or look at things a little differently.

When something good comes of it, then stop and think. It wouldn't have happened without the bad times happening first.

I will follow her on her path

I wrote this on 4/12/12 but am only just putting it on here.

I feel like I am loosing the life I used to have. But I guess that is normal in a life stage like I am now. I started off hopeful when I graduated. I felt myself turning a corner, and although I didn't know what to expect, I was hoping to find a buzzing town, full of opportunities for me to take advantage of.

But instead I found fields, miles and miles of empty fields.
No - Its more like mountains. Huge mountains sticking up into the sky with sharp rocky cliff edges that I somehow have to climb, with deep dark caves.
And I'm trying! I'm climbing up them but I don't feel like I am getting any closer.
I can see that town beneath me, but I have to get past these mountains and I don't know how.

Is living with a chronic illness just going to be a life of mountains?

More Hospital Visits

I thought I should do a post on here to update where I am.
I started working as a Christmas Temp at Ernest Jones the jewelers, at the end of November.
Just my luck that when I get a job I get ill!
I had started to get symptoms back and after about a week when I was getting worse instead of better, I knew that I would need steroids to get me back on track. Then I started passing a lot of blood, I had work the next day and I knew I just couldn't go. Before this I had been pushing myself through my shifts.
So in the end I decided to go to A&E. Mainly because I knew I needed steroids and that my GP wouldn't be able to give them to me. I wasn't sure what would happen if I went to A&E but thought it might be my best bet at getting some steroids! In the end they kept me in hospital and put me onto IV steroids. I started getting a little bit better every day but I was still in a lot of pain. I stayed in for five nights in the end. Once they try you on the oral steroids they have to monitor you for 24 hours to make sure you don't get worse. So I came out of hospital the day before xmas eve!
I still wasn't 100% but I was a lot better, I said to the doctor, I know my body, I will keep getting better with these steroids over the next few days.
So I continued to get better over the xmas period, I just took it easy.

Then on 3rd January I had an operation which we had planned. It was to try and sort out the abscess I had which kept reoccurring. So that was three weeks ago now, I am feeling a lot better, but still having to make sure I keep my wound clean etc.
We had to sort out the abscess because they want to start me on a different medication (Which I think I mentioned on here ages ago), it would be dangerous for me to start this medication if I had reoccurring infections. So now I'm basically waiting for them to say the surgery has been successful so I can start this different medication. Then I'm hoping that will put me in remission and I will be healthy for a long time! :)

With this illness you never know what its going to throw at you. I'm still on the steroids but the reductions are going well. Steroids are pretty amazing really. They work very well, I'm basically symptom free and have a lot more energy. (I'm even going to join the gym!?!) Unfortunately though it means my face has ballooned! Don't ya just love side effects!! 

Meanwhile, I'm looking for a job again! Lets hope I can turn things around a bit in 2013! :)

I'm so tired

You say that to a healthy person, and they think they know what it means. I’m sure they do to a certain extent. But what I mean is: I can’t lift up my fork to put food into my mouth. If I sit down I might not stand up again. If I close my eyes they might not open, and I don’t know if I want them to.

When I wake up in the morning, its only an hour or two until I feel like this again and somehow I have to push on through the rest of the day.

There is another part to it too. It’s the part that says, I need to sleep so I can stop thinking about all the worries and anxieties that keep running through my mind. If I sleep, I won’t feel the next symptom, the next pain. The next addition to my growing fear of the future.

I’ll go to sleep now and ill dream of another place.     Or just nothing.    That’s fine too.

Leading Lady of My Life

So, my job search is now well underway. I am in the rhythm of the daily routine for the unemployed. I watch some morning TV, search through websites listing jobs that in no way match my search criteria. I depressingly discard more jobs than I apply to, while trying to make out to anyone that asks that I am constantly applying to loads. Then I play computer games, and watch evening TV to fill the hours before I can realistically go to bed. Then when I wake up the next day the whole thing begins again. And somehow, it has been over a month since I graduated with hopes and excitement for the next phase.

Ok, so in the grand scheme of things a month is nothing. Its early days and I'm doing the right things and something will get sorted soon enough.

But it doesn't make it any easier that the only reasons I go out of the house is to drive other family members to the train station, or to help Mum with the food shopping. Its not normal to be getting excited about finding a bigger Aldi!

Tonight I refused my only social invitation of the week - to join my Mum at her knitting club. So, I was sat here thinking about how my life has changed so quickly from the fun of uni and the constant social opportunities, to just watching my facebook news feed.

I reminded myself that, while at the moment it feels like my life is in other people's hands; whether or not someone bothers to take my job application seriously.

Ultimately, its up to me to take every opportunity I can, both professionally and socially.

So maybe I should join the knitting club and the women's institute?

Time for a new begining!!

I can't believe it has been so long since my last blog post! I have been quite busy recently, so I'll tell you about my latest news!
So, first things first, as the recent theme of this blog was me struggling through my degree work while getting through illness at the same time. Well... I DID IT!!! Scroll back down through these posts and find that little guy finding his way up the stairs. I'm at the top! :)
I got my 2.1 degree in BSc (Hons) Human nutrition! I am so proud! So happy that after everything I struggled through I still graduated and with a good grade.  Here is a picture of me and my best friends who got me through everything on our special day. (I am far right). It was such a lovely day celebrating our success together with our families.

Graduation Ceremony at Bath Spa University

Sadly all this means I had to wave goodbye to Bath, the place I was proud to call my home for the last three years. I spent the next couple of days packing up my room and cleaning the house. On my last evening there I wondered up to Victoria Park and watched them blow up the hot air balloons in the evening sunshine. It is something I have enjoyed doing over the last few years so it was the perfect ending of my time there. After all the balloons had gone up in the air I couldn't quite bring myself to leave. I stood watching those balloons float off into the distance while I was thinking about my time in Bath, its like I was watching those three years float away and I was saying goodbye.

Balloons in Bath

So now I am back living with my parents and finding my place within the family again. Its hard not having my Independence like I did but I don't have much choice financially. So now I am on the hunt for a graduate job! At the moment its quite hard to stay motivated, but I'm sure I will get something eventually! I just have to try and stay positive and look at it like a new beginning :)

I've seen a light I can't explain

When you see that light at the end of the tunnel, no matter how far away it looks, keep it in sight and keep going. Imagine what its going to be like when you get out there.

Keep going. You know you can do it.

Torn

I feel like I am getting weaker.
But at the same time I feel OK.
And I feel so buried underneath everything.
I don't want to regret my decision, and everyday I start doubting myself that I have done the wrong thing. I don't know where my priorities lie.
I am fighting so hard, but it is fighting back. With every twinge it hits me and disarms me.
It will get to a point where I can't ignore it any longer.
But I just need to hold on until I am ready to get it with everything I have got.

I'm still so close but so far.

Sunny Days

Bath looks so beautiful in the sun. I love that I can look out my window and see such a beautiful city. I love it so much and will really miss it when I leave.
Today is a good day, the nurse has told me my abscess wound is looking good, I don't need to go back and see her about it unless I am worried. This is good as I have been seen at least twice a week since my operation.
I know my journey is far from over and in a couple of weeks I will be in hospital again. But you have to hold on to each tiny little bit of good to keep you going.
You have to keep holding on, because when you do feel that happiness you remember why you have to keep going :)
I hope everyone has a happy day, if not keep waiting and it will come!

Here is a picture of sunny Bath :)

Remove the coulds, Look at the bigger picture.

I have always loved Delta Goodrem, since she was in Neighbours and singing Born to Try. Everyone at school knew I was obsessed with Delta and I bought every single CD that she bought out, even buying a single twice if it meant getting an extra song.
I remember when I found out Delta was diagnosed with cancer, I was at school and I had read it on the internet during lunch time and I couldn't stop crying. How can such a horrible thing have happened to beautiful Delta?
Her second album didn't do as well here in the UK as her first, you can hear the difference between them. The first one is sweet innocent Delta playing pretty piano, the second is a lot darker and more dramatic. It is telling the story of her battles with cancer and in her own words 'A diary'.
I love the words to every song in that album. I feel like I understand every line.
No I don't have cancer, I can't say I know what it is like to go through chemotherapy and have long periods of time in hospital. But I know what it is like to live with chronic illness, to fear to think of the future, to only think one step at a time, to wonder 'Why me?', and to watch the world change before your eyes.
When I first bought her album Mistaken Identity I thought I understood what she was saying because I knew she was singing about her illness.
Now I understand because I feel it.       I feel it too.
Who would have thought when chance came calling that this would be my defining story?
I'm glad Delta sang about this, because I love rediscovering this album when I'm feeling down.
I think about Delta now compared to when she wrote this second album. She is still beautiful, lovely Delta. I hope she is happy, her third album which was a lot more care-free seemed to suggest she is. I believe she is now working on the fourth so I guess time will show what she has come up with. The picture below is one very recently released to announce a new single is coming!
So, Thank you Delta :) You keep on helping me through and telling me to be strong!

Ups and Downs

If I was actually the person in this picture, I would be getting a lot of exercise constantly going up and down these steps! I think I am spending most of my time on 'I want to do it'. About the highest I'm getting is 'I'll try to do it' But I keep getting stuck on 'I can't do it'. After so much time on that step, I go right down to the bottom, to put it off for another time.
Right now that top step looks so high up.
I feel rubbish that I have ended my day right at the bottom, and that guy at the top looks so happy.
I have to keep hoping that I get there, otherwise all this going up and down would have been a waste of time.

Tomorrow is another day...

But I could really do with the time I lost yesterday.

What does it say about your life when

The thought of trying a different medication fills you with excitement and hope?

I don't care because I'm enjoying feeling like this :)

Six thoughts at once I can't focus on one

I was so happy at the thought of going back to Bath, to be able to just get on with things.
But now I'm back the stress of everything is already starting to kick in. I have only been sat down at my laptop for about the last hour to start doing some work.
The thing is, before I went into hospital everything was going to be hard. All of my friends are working really hard at the moment and have a lot of thing to be working on and to be getting done.
And because of that I feel like I can't complain about the amount that I have to do, I don't want to complain though, I know this is going to be hard work. I know we are all working hard that is the way things are. End of.
But the problem is, we are no longer all in the same boat.
Before I was in hospital I had deadlines I needed to work to and a rough plan of when I would work on different things.
Now everything is a muddle. I haven't been able to work on things properly and I feel so behind, I have already missed one deadline and have been completely ignoring other bits of work. I don't know how to get everything done and time just keeps running away from me faster and faster. My mind is still so tired and it is hard to focus.
And now I don't know how to talk to my friends about this without getting 'We all have a lot to do'.
I suppose everyone is just so focussed on themselves there isn't time to think about other peoples troubles.
So if that is the case I suppose I need to stop caring about how they think of me.
I need to just focus on me.
I need to just focus and get on with things.
I need to try and stay positive.

And I need to remember how much my friends have helped me get through the last couple of weeks. 

My first surgery

I always knew that having an operation would be likely some time in the future, even more so in the last year.
I imagined emergency surgery to be really dramatic, with ambulances and people rushing around and lots of pain and blood.
A week ago now I woke up from emergency surgery, but it wasn't like that at all.
I knew something wasn't right and I would have to go to the hospital, but I walked in to A&E and waited around most of the day before they could do anything because I had eaten.
It was odd because I wasn't that scared. I could only think about the present and that was what needed to be done. People pushed me around in beds and just did things to me and I had to let them.
They drained a perianal abscess and left an open wound so it heals from the inside out.
I spent a total of five days in hospital and after a week, it is healing well. It is still uncomfortable and I'm still tired but I'm starting to think about normal things again, and starting to do some bits of uni work.
I'm worried now that this is going to hold me back and I'm not going to be able to do as well as I wanted in my degree. But I'm going to try to keep fighting for it. I just need to give myself some time to recover and then I will be able to really push myself.
In a way this makes it easier for me to keep going. Now more than ever I don't want this to beat me.

Swimming up stream

I really wish I could say that it was the most important thing in the world to me right now.
I wish I didn't have this holding me back.

But who knows, maybe I wouldn't fight as hard if it wasn't.
Maybe it wouldn't mean as much.

I won't be afraid from the tears I cry

Having this illness has changed me.
Its only been four years but I can't remember what life was like before, so in some ways I can't even tell if it has, but I know it has, because it is different. I wonder if anyone else can see the change.
I remember myself young and silly and happy. Innocent and naive.
Unaware of the real impact of the harshness in the world.
Obviously if I had the choice I would wish all this away, it will never give me more happiness than pain and grief.
But I wouldn't chose to forget and go back.
Because that's what life is; figuring out who you are and finding a place for yourself somewhere in this world.

I don't want people to see me as weak because I have a disease. It might make me tired, but its not the same thing.

Music can bring up so many emotions...

That it makes me feel alive.

When I grew up, it was expected that me and my sister would learn a musical intrument. We were never pushed into it, it was just a natural progression into the people we would become. 

There is almost something magical about hearing some music, or those perfect lyrics that will spark and light something inside you. 

Suddenly, I can't imagine why I would ever want to leave this world.

I'll be ok for as long as I have music.

Journey of self discovery...

Almost two years ago now, I came out of my first long term relationship. By the end of it, I felt drained physically and emotionally from putting in so much effort. When I came out the other side, I had this new found freedom, and went through a little bit of a rebellious streak. And when that was over, I thought: That's it now, that's enough. I just needed time to my self.
I know it sounds a little cliche, but this was something that I have needed, and benefited from. When I came out of the relationship, I had been diagnosed with Crohn's disease almost two years. I hadn't given myself that much time to understand, to properly come to terms with everything that had happened to me. Its fair enough, I was just trying to get on with my life.
But with all this time to myself, I have learnt so much.

This is what I have learnt:

1. Life is tough. It throws things your way that you would never expect.
2. Time keeps going. Even if you want your world to stop, you have to keep going.
3. People care. People will help you if you ask them, you don't have to struggle alone.
4. I'm stronger than I thought. The more I get through, I enable myself to keep going.
And finally,
Working towards a degree is hard work for anyone. Sometimes I just feel so tired I don't want to face anything. But I know what I am fighting for and I know what I want. If I let this beat me it will be the worst feeling of defeat.
So: 5. I can keep fighting and achieve anything I want. Because I have accepted there will be hurdles along the way.

And I won't let it beat me.

Happy New Year!

To be honest, I liked 2011, and I'm not sure if 2012 will match up!
I can't say there was anything particularly special or bad about 2011, but that's what I like about it. It started off unwell and ended up healthy-er! It has generally been a happy year. Surrounded by the best of friends and good memories. My summer was a lot of fun, my first festival and my first aeroplane!
I hope 2012 will be happy. But it is the year I have to grow up and be an adult, I will graduate and no longer be a student. I will finally have to find myself a proper job!
I have a couple of wishes for 2012. And for once, I want more than anything for them to come true!
For anyone reading this - firstly, thank you for reading my blog! I hope you enjoy it and see that I am a positive and mostly happy person despite any negative feelings shown in this blog.

And finally - happy new year! :) I wish 2012 to be happy, successful, but most importantly healthy!