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


  1. Hey Ayesha,

    Although I don't know what it's like to live in your shoes, I do know what it's like to make out you are feeling happy all the time. Just wanted you to know that it IS ok to show your real feelings. Keeping things bottled up isn't good for you. Maybe you could speak to your GP or consultant about having some counseling. Talking to someone you don't know about your feelings really can help (and I found it easier than talking to my family and friends).
    By the way.....I hope you are enjoying the books I sent you for World Book Day!!
    Take Care Ayesha

    Kim x

  2. Hey Ayesha!!

    I tried to leave a comment yesterday, but seemed to have a few troubles...hopefully this one works out :o) (sorry if it is so long!!!)

    I had a lot of troubles myself coming to terms with my lung condition. Although, it is definatley not as severe as yours, I can sortof relate what it's like to try and put a smile on your face and pretend like everything is okay. I do need two pleurectomy's to hopefully prevent my lungs from collapsing anymore..and that took me some getting useto..Also, since my condition isn't really common, or well known (catamenial pneumothoraces) I've had to tell my doctors what it is because most of them have never heard of it..most of the ones who have, know very, very little. It's really frustrating to not be able to talk to your friends and family about your deepest fears, thoughts and feelings...its so hard for them to understand. I can only imagine what it would be like to need a double lung transplant critical to your heart goes out to you girl..that must be a hard pill to swallow... I know when I went for my first lung surgery, I was freaking out so bad I could barley sit still!! I cried a lot, got myself so worked up that I had my heart rate up to 140 beats per minute-at rest! I'm still terrified to get my other lung operated on, but for my family and friends supporting me, gotta put on that smile, right? Keep putting one foot infront of the other..and hang in there Ayesha. If you want someone to talk to, I'd love to chat with you! Although I do not know exactly what it is like to walk in your shoes, I can relate to you just a bit, and am always willing to listen.
    Again, hang in there thoughts and prayers are with you!!
    Hugs!! X X
    p.s. my email is :)

  3. It sounds like you're doing great. You seem very aware of your feelings and thats what keeps you going..intelligence and inner strength. When your body lets you down your strong mind will help you. I know what its like to keep smiling when your at a low ebb. When I cannot help myself I try to help others..doing something good for someone warms me up inside.

  4. Ayesha,
    Wow! You are good with words. To pour out your heart in that way was amazing. I can't even begin to imagine what it must be like - but I thank you for being given a glimpse. You are one incredible girl.

  5. Hey, You may not think it but staying positive can setes be the best thing, even when it seems pointless! From what I've read you are an inspiring person, I wish I could be as brave and realistic as you! I love drowning out the world through listening to music things like Evanescence and MCR, but please try something like *ponders* Scouting For Girls - you'd be surprised at how good you can feel insted of depressing yourself further,
    take care and good luck with everything,
    Steph - if you ever want to talk

  6. You are so brave, I admire you.
    Stay strong x

  7. Hey! You go girl! Haha, that sounds very cliché. I wish I could be as strong as you. I make it seem like I am but I think people see through . . . And you're an excellent writer. Wow. You've really inspired me. Good luck for the transplant. I can't imagine what it's like.

    I think the Ayesha nobody sees is an amazing person. My email is if you ever want to talk, and I see a lot of other people posted theirs too . . . keep faith :)