Thursday, August 12, 2010

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 that.

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  1. {{{{{{hugs}}}}}}

    easy to type but sincerely meant.

    Keep on keeping on. Tell it like it is.

  2. Hi, I've been following your blog and I also have a friend who has CF and is awaiting a lung transplant..she is currently on a ventilator and she's No. #1 in her region for a transplant...we've seen lungs come for her though the doctors don't find them acceptable for her so we wait some more. Her name is Kerry Hutchins and maybe you will be able to find her blog and follow her journey as well. I don't know if you are a believer in Christ or not though I understand your pain and frustration. I am praying that lungs will come your way. Maybe you will get your lungs the same time Kerry gets hers. Who knows...

  3. I sometimes feel guilty putting updates on facebook about doing everyday stuff because I know just how hard it is for you to do the same. My heart really goes out to you I hope so much that you get that call soon, it was really upsetting to read your words about you not knowing who you are. It's really obvious from all the work you do to raise awareness and your tv interviews that you are such a nice person. I just hope that you fight it as hard as possible because the day you get those new lungs and start doing normal stuff will be a great day, even for those that hardly know you. Like Reading your blog hope you keep plogging. R

  4. Hugs. I really don't know what to say Tor but I'm thinking of you.

    Take care,
    Moll x x

  5. Okay, you'd know who this was from even if it was anonymous i suspect.
    You're bloody amazing. You know i think that though, and i know it makes absolutely zero difference to how you feel right now.
    Who 'you' are comes across more strongly from you than anyone else i know. You're strong (strength isn't about always smiling and acting as though everything is fine, it's about keeping going despite it being absolutely crap and close to being unbareable; about finding that strength you never knew you had when push comes to shove.) You sparkle with life, despite there being so little breath left in you. You're glamorous and a fabulously glittery magpie- and in every picture you make me insanely jealous. Without the confidence to believe in yourself, i know this comment is yet another useless one.
    Above all this, you are the best friend a girl (or boy) could ask for. When i'm in tears, you're the one i want to speak to, and often the only one who knows how to calm me down. When i'm happy, you're the one i want to come and see and share my joy with. None of this has anything to do with your health. None of this is masked by your oxygen, your breathlessness or your wheelchair.
    I wont say 'when you've got your lungs...' because i know this is too far in the future for you, too unknown. I will however say that your friends are here waiting for you when you're ready for us- even if our lives seem a million miles away.
    Only a phone call away
    PS. Sorry everyone else has to read my ramblings :S

  6. I hear you hun!! I felt like that just before I got my transplant, I felt like I had become this withering shadow of my former self and didn't know how to find me again. I still haven't found me after transplant but I'm sure I'll come back in time.

    I just wanted to let you know that your not alone in feeling this way! I really hope it wasn't me who triggered you feeling like this today, I hope everyday that your call comes!!

    Sending you love V xx

  7. I read your blog today and felt so many parallels with my feelings, I cried the other night because someone didn't say goodbye to me on twitter after we had talked.I know what you mean about lack of confidence I feel like a walking illness,all I seem to do is talk about the way my breathlessness affects me.
    Stuck here on my oxygen, I have no answers for you about how to proceed, I just know we must, that is the only option. Just be aware that my thoughts are with you. Make what you can of a bad deal.Things will change they always do,you keep letting it out if it gets too much!
    I hope that you find what you need to feel better about things,while waiting. My heartfelt,positive wishes go out to you.We may have no control over our lives while waiting for lungs but we have control over how we feel about the wait let try to make it as good as possible.All the best Mark

  8. You write so eloquently and are describing that wait for transplant so vividly. I think you are right about your world becoming small and making even the slightest upset 100 times bigger. I remember feeling frustrated reading others blogs because it's all very well saying 'when i get my turn' but I know that makes NO difference to how you feel today. If you fancy a chat, drop me an email. Sending some hugs to remind you people really care - and they see beyond CF and illness. jac xxx

  9. First - You are a good friend and you have lots that love, admire and support you, even though they have not met you! You still have a personality a very strong determind one that we all see.

    I love what this person has said:
    You're strong (strength isn't about always smiling and acting as though everything is fine, it's about keeping going despite it being absolutely crap and close to being unbareable; about finding that strength you never knew you had when push comes to shove.

    The little things will seem much bigger problems when your feeling ill and low. Everything spirals and seems HUGE!

    As others have said you write so well! The words and explanations you use are like an authors.

    I am wishing upon a star for you tonight to get your dreams and wishes very soon

    Sending you the biggest, squishest hug.

    Love ya xxxxxx

  10. I love your blog ... so honest and open about your trials and tribulations, it really does put most of lifes problems into perspective.

    I can empathise with you as I have a horrid condition which has reduced me from a mountaineer and marathon runner to someone who can hardly walk a few steps.

    But reading your blog makes me feel a bit of a fraud as you fight to raise awareness and save not only your life but others too.

    Keep fighting and I truely hope that the saying "Good things come to those who wait" is very very true for you.

    Take care and do your best to keep smiling no matter what life throws at you

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  12. Hi Tor

    As someone in precisely the same position as you I just want you to know how much your last few posts resonated with me. I've still not had the guts to acknowledge never mind say some of the things you've said though and I hope it does your self esteem the power of good to know that I admire you greatly.

    Nobody 'normal' can possibly understand how you're feeling so if you need someone to talk to who can actually relate then don't hesitate to give me a shout.


  13. I completely agree with what J said. You are strong coz you keep going. Could I also say that when I saw your picture in the BBC news story, I thought "Wow! She's so pretty!!" And you have such a great smile as well. I don't know you at all, but already your courage and just how incredibly special you are has already shone through. Keep going.

  14. Many more are quietly listening and getting inspired by your strength in just sharing your minutest highs and lows. You're contributing more to society than most people "out there" who seemingly have more freedom but ultimately add little. Keep on!