Friday, 5 March 2010

A tunnel with no end

It seems at the moment my life is like I'm climbing up a dark tunnel with no end. It seems like my life is a huge maybe and the maybe is like a rope I'm holding onto keeping be from falling into the dark abyss below. Some of times I feel like letting go and let myself fall and just fade away, just give up I guess. Whilst other times I thing wait things could go right I could get a transplant this makes want to hold on with all my strength. Everybody seems to think I'm coping fabulous with everything. They only see what's on the outside. On the inside these uncertainties of what lies ahead are eating away at me, like some kind of monster!
over the past week I have fallen asleep in tears thinking what if I can't have a transplant? what do I do then? without one I won't have very long at all. If I try talking to people about it I get ahh you'll have ages you always seem to pull through. OK I have so far but every time I end up in hospital I seem to worse and never get back to what I was before the admission.
I feel as if I have to be that happy positive person all the time because its the image people are giving me. That I have a happy-go-lucky attitude towards everything. I come across that way because what else am I meant to do!
I get asked wow isn't it scary you maybe the first person to have a Lung transplant with Wegener's Granulomatosis?
Well duhhhhh, of course it is! But what am I meant to do! sit screaming that I'm scared!
I get the oh you are so brave, how do you cope? I cope because I have to! I don't know what it would be like to have life of a "normal" child my age, this the life I have. Yes I do get jealous, very jealous but hey you can't have everything. Don't get me wrong I am grateful for what I have and all that etc etc.
The more people say oh you are so brave and positive, you are such a fighter etc, the more I hide how I really feel and the more I put on happy face. but I've taken to sitting alone in my bedroom listening to music through my headphones as loud as possible usually depressing music to block out every other sound and just think about whats going to happen if I don't get listed and if I do what if I don't get a one in time and having a good old cry. This usually takes place when my sisters are at school and then before I go to bed, that sounds so sad it's become part of my routine.
It's like I'm two different people there is the me that everyone knows and sees happy clappy Ayesha, also a chatterbox to those that have me on msn/facebook. Then there is the me I know, the Ayesha riddled with worry, fear, paranoia.
And to top things off my appointment after my transplant assesment which I will proabably be given a decision as to wether I can be listed or not, well this appointment is on the worst day ever. I'd rather not mention the date on such a public blog. but yeh if it is a no, my word what a day that will be, I could change the date but that won't change the what is said in the appointment and I will most likely have to wait months for another.
so yeah this was basically a blog just to write what I'm feeling sometimes I wish I had a duplicate me to talk to. there isn't really many people I can talk to about it like anybody is even bothered anyway. They just say "aww""stay postive" really they are probably thinking "not my problem"
so this is a post from the Ayesha on the inside not the one everybody sees.
remember "When you breathe, you inspire, and when you do not breathe, you expire."
adios amigos