I want to live so badly so why is life not letting me?

Life has changed so much and it's nights like these I lay down and actually realise all the things that I miss. Life for most of us changes through the years and sometimes even months and weeks but I can't help but notice sometimes that I may have drawn the short straw at life.

I miss having nothing to worry about. I feel like within the past 3 years I've become an adult that I shouldn't have to be right now. For example, I barely stay at friends houses because its so much drama to sort out. And another is that I rarely ever am well enough or have the energy to go out, and when I get invited out most pals usually forget I can't actually do all the walking and the long days. 

I miss the days when I'd go round my best friend Chloe's house and stay for like 4/5 days straight in half term, when I was only supposed to be staying a day. Being stupid with her, running around, eating a months supply of candy in one night, waking up to scrambled egg on toast or cheese on toast, playing just dance like we hadn't a care in the world (and in one aspect we didn't, I didn't, not like I do now), having food fights, and doing one another's makeup. It's not like that no more, and however much I want it to be like that again, it won't be, ever again. Those days seem to have gone as quick as they came. 

In summer I went out with a bunch of friends and what I thought we went out to do, didn't happen and plans changed which meant I had to go home because I couldn't do the walking. This isn't a "Oh I wish my friends weren't so careless to forget" because they really aren't at all and I'm so glad they invited me out because even though I'm sick and not 'normal' they still included me. It's more of a, "I wish I didn't have to go home and could carry on like them all, I wish I was normal and not sick". Before, I could of easily stayed out with them, walked to Lydiard, got pizza and all the other stuff but now I can't do that, for a number of reasons and it's absolutely gutting some days. 

I just want to some days be able to get up and go, not plan things, go out and stay out for as long as possible and just be a teenager. But it's pretty much impossible and now I spend most of my days in bed, sleeping, and rolling about with achy bones. 

I didn't ask for this sickness in my life, and I don't want it in my life but I have to put up with it. It's never going to leave me, it's always going to be there and there's nothing I can do about it. I have such a desperation to live, to get better, and to live my life just how I want it and to do all these amazing things. I want this so bad, just to one day to be better, for a cure to be found, to know I'm not going to die at a young age. I want to live so badly and life just doesn't want to let me do that.

Love, Erika