When I was younger I always wanted to be a Disney Princess, like most little girls, and I always dreamed of having a big white wedding, and a massive mansion for a home with my Husband and little girl and boy. I always dreamed of having a huge walk in wardrobe, with shoes and clothes in every little corner, like the Hannah Montanna one. I also dreamed of being Hannah Montanna/Miley. I think we all went through that stage, but I always thought I'd get there some day, not neccearily Hannah/Miley but my own self, like her, with all these fabulous things that she had and more. I also always had the dream of being a teacher, then a Nurse, then a Vet then be famous and not need a job, so yeah it kind of escalated quickly what I wanted to be and now I have no clue at all. I think we all know it was never going to happen but we never thought what did happen would.When I got sick it was really hard for me to accept my new life; I had to become much maturer than I was at the time and now I seem to act like an adult which I hate sometimes. I find it hard to find some things enjoyable or funny when I should and unfortunately it's something I can't change. I have to be mature because if something goes wrong when I'm on my own, or out with my friends, I have to know what to do or I'm pretty much screwed to be honest.
When I was on the Iloprost which was through the Nebuliser I had more freedom than I do now; I was able to do more things, not because I was healthier but because I didn't have a line inside of me. I could swim, I could horse ride, dance, wear certain clothes, not have to be home at specific times, not need to take Oxygen with me wherever I went etc (I can't think of anything else which is quite major). Now that I have the Hickman Line I can't do any of these things because risk of infection and illness, or because my pump can't be banged about, or my medication needs to be changed. And because of all this, I've realized that I have to make my own fairy-tale or I'll get nowhere, not do anything and I'll end up letting my disease beat me. I know that maybe everything in life isn't what I want or how it was supposed to be and I can't change that, however much I want to I just can't, which is unfortunate but it's life now. Yeah, I do get upset about it and I wont deny that. Like everyone I have my good days and my bad days, my good weeks and my bad weeks. I had a passion for swimming, horse riding and dance and now I can't do any of those things anymore. I have to find alternatives which again is really hard because I now have problems with my feet which can't be fixed and it absolutely kills me, drains all the energy out of me, the fact I can't just text my friends one morning and say 'Lets go to town' because it all depends if my parent's are around to drive me, or if I'm feeling up to it, and all that malarkey and I tell you it is really hard to deal with sometimes but I have to make it work, or I have no fairy-tale, no life and I just won't let that happen.
It might not be the most ideal fairy-tale but it works I guess, and if I could change my fairy-tale I wouldn't (except me having a terminal disease, yeah I'd change that) because it's taught me so many lessons in life and I'm blessed to have such wonderful family around and such wonderful friends, because without my friends and family, I wouldn't of gotten through this, I wouldn't of had the strength to create my own fairy-tale and because of them I'm still here, fighting and I don't intend to stop, however hard my fairy-tale gets.
Erika X
