Friday, 13 August 2010

Reality of waiting for transplant

Apologies to those readers who will be upset/annoyed at this blog post but I am so pent up with emotion at the moment I have got to let it out somehow. I am so unhappy right now I can't even find the words to tell you, nothing has "happened" as such its just a culmination of every single thing making an overflowing load that is just too much to bear.Life is so unbelievably hard everyday and I just don't know how much more I can take of it. I hate myself for even admitting that fact. My body is failing me, breaking down in ways I didn't know were possible and reminding at every point possible that its doing so. I mind my diet all day every day to manage my diabetes, my back and joints and tummy ache often in synch with each other, I don't sleep properly and often have nightmares, I'm nauseous and sick each day, I am exhausted and breathless from the minute I wake up till the minute I lay down, treatment is taking over my entire life and thats the tip of the ice burg. The wedding was a treat, I hardly manage any special occassions, outings etc anymore and when I do I whacked for days after and have to suffer for it. I see events like Christmas and birthdays and they seem so far away. I convince myself that I will have had my transplant by then and will be able to join in properly but then they come and go and I'm still stuck in this limbo.Nothing seems to be going right at the moment, even silly things like buying new furniture or disputes with my uni over something I'm unhappy with are not straight forward and although they are little things they become huge when your life is as small as mine. I feel like I am being blocked at every turn I take, the changes I am so desperate for to make me feel as though I am on the right track just in one insignificant area of my life over which I have no control. I am asking for help, from GP's, doctors, evryone around me, it's not their fault that they don't have the drugs, lungs, answers I need to make things just that bit easier.I am trying so hard to feel better, to keep fighting but I don't know how to put one foot in front of another right now. Its as though everything is willing me to give up, as though they know I'm not supposed to still be here. I won't give up I haven't reached that stage yet but I can't keep this up without some change. "Helpful people" tell me I have to try harder and that things "don't matter/will be sorted out" but they dip in and out of my life knowing certain details and not the whole picture. They go back to their own lives. I feel really alone at the moment, no offence to anyone but its like they are a million miles from where I am now. The internet is my life line but also a curse, it keeps me in touch with others but also exposes me to people doing all the things I dream of while I can only watch with jealousy from the side lines.A wise friend said to me recently that serious illness inevitably has an effect on confidence and self esteem, it's certainly true in my case. I have no confidence in myself now and my esteem is at rock bottom. I feel that somewhere along the way I've lost myself, I never really had chance to find out who "me" is, for as long as I can remember I've had to make huge sacrafices for my health. I never feel happy with my appearance because I go for comfort, and never have the energy to be able to try things on properly. I don't like the person I've become always moaning, wrapped up in my health and putting a downer on everyone around me, I hate that person but can't pretend that things don't matter when they do so badly. Friends will tell you that I've been quiet lately and its because I don't feel like talking, bringing others down or putting on a smile and pretending all is fine. It sounds dramatic but I don't know why anyone would want to be frinds with me right now as I have no people skills or anything of interest to say.I'm sorry for such an out pouring of negativity on here. I needed to get it out somewhere and unfortunately you got lucky! Rest assured I am ok (I know, I know obviously not OK) but I will get back to more solid ground at some point hopefully soon. My life is a gift and whever I have a negative thought I DO remember that, even though it doesnt seem like it.


  1. I have no words of comfort for you but I just wanted to say that this is a really good blog. As I read it, I recognised it as myself when I going through bad patches, so to know you feel like this constantly makes me heart bleed for you, it also scares me for my own future but don't feel bad for doing that!
    I hate it when people say things will sort themselves out, no they wont! Thats the theory people live by when they are ill for a few days or weeks, dont they realise this is constant?! I wish so much that you could swap bodies with someone for a day just to give them a taste of what life is like with CF, they simply dont have a clue, all they see is our brave faces and then if you remove your brave face they dont want to spend time with you as the truth hurts xx

  2. Tor, you don't know me in any way, but I've been watching your blog for a while having found it through LLTGL on Facebook.
    I'm not someone who needs or has had a transplant, just someone who believes in it strongly. I have no clue whatsoever how you feel or what you are going through but I feel moved by your blog to post a reply for the first time.

    I don't want to be helpful, I can't offer you any light, telling you to try harder would just be an insult when I imagine all you crave is rest from the constant struggle - while it's never going to be the same I can identify with THAT feeling. Maybe that's why I feel compelled to post.

    I only want you to know then, that there are complete strangers like me who will probably never meet you but care about you nonetheless thanks to the sense of you we have from your blogs.

    I care about you. And I'm listening.

    It's all I have to offer... but I'm voicing it because there was a time in my life when I felt unsure if I could keep fighting, and the mere fact that people who'd never even met me cared enough to reach out was an enormous boost to my non-existent self esteem.

    You will keep putting one foot in front of the other because you are a fighter, even when it feels completely impossible to take another step. It's okay to feel like shit about it even while you're soldiering on... so tell us on here, we'll listen.
    (((virtual hug)))

  3. Hi hunni, just to let you know there isn't a day goes by that I don't think about you and pray that you get the call that brings you a new start.

    As we go through life there are only a handful of people who really make an impression on us, you are one of those people for me. I can't begin to understand how hard it is for you but I will continue to pray for you to be given the extra strength you need until your call comes.

    Sending all my love and the hugest hugs in the world. x x x

  4. As I wait for my own transplant, I can honestly say that I've felt this way before. I go through periods of feeling just awful and I have days when I only feel a handful of these symptoms and my days are much easier.
    It is sad that we have to get worse in order to get better. Most often the process is overwhelming, yet ultimately it is all that we can do.
    I wish you as much comfort as possible while you wait for your transplant.