I have selected around 15 blog posts, but I am still waiting to here what others think. Yes this is our 3rd year and really we should be decieding this all for ourselves, but I feel that this project was put out into the world and I was overwhlemed by how many people resonded to it. I really would love people to feel apart of it because it was made to show people who I really am.
The 5 I really want to include for sure are:
1) BEEN OFFLINE!
Hey guys sorry that I haven't been posting for awhile! I have just moved house, so if any of you out there have ever moved house you will know what I am taking about! It's a bitch! On Sunday alone I had to work, come home move my stuff and then clean the old house for inspection! And right now the new house is still a mess! Oh and also my Internet has been playing up!
So day 14! YAY! I made it 2 weeks which is amazing for me let me tell you! As I said in my last post I find it really hard to take everything! And it gets to the point where if I don't do it, it then becomes a punishment thing and I keep going downwards! Then it's 3 months later and I haven't taken anything and I feel like shit and hate myself! It's a fucking cycles that I hate! but I don't know if I have enough strength in my to keep doing this for the rest of my life!
I just want a day off, and even if I don't take my meds all day I feel so guiltily about not taking them that I never get a break!
But think of it this way..... You have the most exhausting day (eg. moving house) then you have to save that last bit of energy to take you meds and put more effort into a life that sucks!
Sorry I feel like this blog has just become a place where I can vent! Next blog I promise more of the transplant story! I off to do a nasal wash out!
2) I SUCK!!!!!!!!!!!!
Today was shit! I was shit and I hate doing this so much! I keep beating myself up if I don't do everything right and today was the worst! I was running so late that I forgot my creon when I went to work for the full day, which I have to have everytime I eat! And then I felt so bad about that I totally went out and ate as much sugar as I could get my hands on! And didn't do my blood sugar because I didn't want to look at the truth of what I had done! And because I sucked at this I totally did something wrong a work! FUCKING KARMA!!!!!!
This is my biggest problem sticking my head in the sand! I don't want to know or face the truth because it will hurt and being me back to this SHIT LIFE THAT I LIVE! And if I find out the truth then those people around me will and I will hurt them! I'm the protector I protect people from the truth because I don't want to hurt them!!!!!
I hate this disease and I am sick of thinking about death all the time! GET OUT OF MY HEAD!!!
I can't do this!
3) FOR MY MUM
This blog post is for my mum. She is the beautiful lady that you see in two of the photos below.
She is my inspiration to life, she is hard working, loving, funny, warm, truthful, kind and most of all supportive. She has been there for me even when I have let her down and she is the voice in my head telling me I can do better. She has been on the CF association almost all my life and has found great friends amongst the other parents. And when I lost a friend to CF she was at his bedside for the both of us until he passed away.
Thank you mum I would not be here without you.
4) THE SPIDER BOY
People often ask me how I deal with everything. And to be honest I don't really know. I know that I have the most amazing and supportive family who have been by my side through everything, even when I have been self destructive. And if I am being honest I am not the most, what do the doctors call it "Compliant" patient. Also having beautiful friends who I count as family, all of these people give me hope and laughed.
But in the end the biggest copping tool that I have is my humor. The ability to laugh at yourself and to laugh at the situations mean to me that there is always something to hold on to and some thing to reach out for. I trust my humor. It's my strength.
Also one more thing that helps me deal is the spider boy.
About 10 years ago my auntie went to India and there she met this boy who was begging the tourists for money. This boy had, had his arms and legs broken so that he now walked like a spider. One of the tour guides told my auntie that the people who owned the boy had broken his arms and legs like that so that he would get more money from the tourists.
So when she came back she told us all the story of the spider boy, and from that day on my mum has never let me forget it! Every time I cry or complain she says to me 'your not the spider boy!' And while after ten years it has turned into a huge joke between me and my mum, it does help to remember that I have great things in my life and I have been able to do great things and there are people who wont. The best way to get over yourself is to help others!
5) THE REAL REASON BEHIND THE PHOTOS
1o years ago to this date I underwent a liver transplant. This is one of the biggest operations that a person can undergo, I was on the table for 14 hours and my recovery took 3 months.
The reason why I wanted to take these photos of myself was because I have fallen off the path, my health is just not something I want to put first. This in turn makes me feel like a bad person. Why did I deserve this chance when I was not giving myself anything. When I was a child and I new that I hadn't taken my medication right, and I had hidden it from everyone. I would think, I can't wait to be an adult. Everything will just happen right and I will take my medication. I was wrong it is just as hard then as it is now.
I have gotten so good a fooling everyone or maybe they like me have been fooling themselves, I don't take my medication most days. I wake up promising myself that tomorrow will be the day, that I will become this good person. But I fail and then I punish myself, and the cycle never seems to end no matter what. Hospital, doctors, parents and friends nothing brakes it.
So I came to the conclusion that if I had to keep record then I would have to become accountable. And that is the real reason behind the blog.