A very tricky balancing act

I'm a bit stuck for what to write today but felt I needed to unload some of my overcrowded mind. I don't know what to write because, although it sounds weird, I don't know how I'm feeling. It's not as clear as being happy or sad or angry, I'm not ill, but I feel.....not right.
Physically I don't feel ill, temperature has been checked, oxygen levels too, I'm not coughing more or doing anything different to normal which would be a cause for concern, I've had 2 blood tests in the last two weeks and my infection levels are fine. I think the best words to describe how I feel is run down, my energy levels are rock bottom and it's a real struggle to find that "get up and go". By the time I've got washed and dressed in the morning I'm worn out and it just gets worse during the day. I tried to get myself sorted out one rare morning when mum had to go out, thinking "well I can run myself a bath thats no too draining, is it?" Turns out yes it is too draining, by the time I'd run the bath, got in, got out, got dry, got dressed I was literally retching because i was so breathless. It was exhausting physically but also a hard knock mentally too, sometimes i kid myself that I choose to not push myself too hard because its simply not worth the pay back healthwise but the reality is I actually can't do these things without help anymore.

Aside from that I just seem very lethagic, achey and generally run down. Like I say definately not ill, I wouldnt even say sickening for something just feeling like my reserves of energy aren't there. Since HArefield I've been pretty worn out and just doesn't seem to have got much better.My skin is rough and dry no matter how much I drink/moisturise/exfoliate. The last few days I've had times when my stomach went into meltdown with cramps, bloating, aches and bowel problems (lovely!). I've also had times when my breathing has been a real effort. Not constantly but enough to wear me down. No matter how much I rest it makes no difference and decent sleep is also very hit and miss.

It's kept me on my toes mentally and emotionally too. Being so worn out make me emotional and weepy because I don't know what to do to help myself. I am someone who needs to try and "fix" problems and know that I'm doing all i can to help myself but at the moment its like everything I do goes into the big black void. I'm on everything I can be on to keep those pesky airways open and yet they still seem shut most of the time.

My brain feels like its been blitzed at present. I think I was more stressed than I realised about the Harefield visit and since then have been panicking at silly things. Everytime my mobile rings I literally freeze. You've heard the saying "your blood runs cold" thats the best way to describe it, my heart beats fast and my breathing just goes. Its insane and irrational as my life depends on the mobile phone ringing!!Since Harefield I had a slight worry about one of my blood tests (all fine now) but that completely panicked me too, wondering what would need to be done. I definately have my panick mode when the hospital ring, its pure fear about them saying something is wrong that needs addressing. I am in no position to "think about" treatment, they say this needs doing an I have to say when are we doing it then. Its quite a lot of pressure.

Added to that are uni work which is difficult to fit in with how im feeling and also pretty stressful, Christmas presents which have to be bought online mostly as shops are a nightmare near Xmas and the wheelchair doesn't stand a chance. Everyone I know has colds and there are loads of bugs going round so again I am constantly worried in public places when theres coughing and sneezing going on so I'm trying to avoid crowds. It may seem extreme to some people but I've waited 3 years for this transplant there is no way I am getting a call and being sick with a cold so it can't go ahead. It means sacrificing going out but I will just have to play it by ear and do what I'm comfortable with.

I often feel like life at the moment is a very precarious balancing game, a tiny touch and things yo yo out of control. It's a very delicate buisness and getting one thing feeling better puts something else out of balance. You're constantly having to tweak things to try and keep everything from going awry.

So, my scrambled brain and I are going to leave you now. Heres hoping that things straighten out a bit soon and I can report better things next time. :)


  1. Thinking of you Tor and hoping your call comes very soon. Hugs.

    Take care,
    Moll x x

  2. I admire your strength immensely, you still come across as quite positive even if you aren't feeling yourself.

    completely unqualified to give advice but this is where I go daily to feel content.

    Never give up hope, or that lovely positive attitude.

    Clare x

  3. tor, i just read about your plight on bbc news,i really dont know what to say...but whatever happens,good or bad,dont be afraid..god looks after his own.
    best wishes maurice in glasgow x

  4. Hi Tor,

    Just read your story on the BBC website and wanted to tell you how much I admire your strength, courage, and positivity.

    You truly are an inspiration and I hope that you get the fortune you deserve.

    All the best,


  5. Ello!

    Hope you're feeling well today! I've just read your bloggy bit on the BBC News website and thought I'd best comment - I'm going to sign the organ donor list tomorrow, and will try to pursuade my family and friends to do it too - not something I think they've (or really I!) have thought of doing!

    Keep going, and stay strong! You're a real fighter.

    All the best


  6. Hi There,

    Another person here who saw the BBC piece - I really hope you get the call you have been waiting in the near future, I for one am on the organ donor register and I urge anyone else to do the same.

    Best Wishes, Darren and Tors (yes, another one!) in Reading xxx

  7. You humble me with your strength. I am 58 and I am without the courage that you obviously have. You are an inspiration to everyone. I will sign my organ donors card at the nearest place, probably the doctor's surgery. Keep your spirits up.

  8. Hello,
    I've just come in via a link from the BBc news online. This is really just to say hi, I find your blog really interesting and I hope you don't mind if I 'follow' it.

    I hope you get that phone call very soon.

    J x

  9. I've just read the BBC News article, and it's led me here.
    I just wanted to pass on my best wishes for the future. xx

  10. So courageous. Wishing you all the best and, most of all, that you get the all important call.

    With best wishes from the Bruce family.

  11. Stay strong, and don't give up, you'll get that call.

  12. Best, best, very best wishes :-)

  13. hi!

    i have just read your story on BBC news! you are an amazingly strong person, you're amazing!!! Your blogs touched me and to see what you go through everyday, every week, every month is astonishing!! You're attitude is awesome, there is no other word to use. i wish you all the luck in the world...no the entire universe, that you get that call soon.

    never stop hoping, never stop dreaming, never stop fighting!

    x x x x x x x
    laurel Brown

  14. Just read the BBC news website and came and looked at your blog. My husband and I will be thinking of you and praying for you. I hope you get the transplant soon. Keep your spirit up. You are an incredibly special person.

    Take care,

  15. Have just read your Blog via BBC News site. I wish I had your strength and courage. I had a section of lung removed a couple of years ago due to Lung Cancer and for a while I thought my life was over. I have recovered and am probably fitter now than I have been for 25 years or more. I struggle with walking up hills and stairs but I keep going and end up very breathless, which always scares me. But the feeling only lasts for a few minutes and then I regain control of my breathing and move on.
    Next time I feel sorry for myself I will think of you.
    Good luck to you - fingers crossed that a suitable transplant is not too far away.
    Best wishes

  16. Hey Tor, I am so touched by your stories and blogs. I completely understand what you are going through and the emotions, please please try and be strong and think about about all the stuff you will be able to do once you have your news lungs....... I had my Double lung transplant in 2008 @ 29, there were times when i thought i am not strong enough to carry fighting but we are. KEEP BELIEVING HONEY. email me if you need to with anything you want even if to scream and rant :) gina.caton@nnuh.nhs.uk xxxx love G

  17. It is obvious from your blog physically you are frail.

    That said your resolute strength of mind and character are immense and I am in awe of those qualities in one so young.

    I hope that call comes for you very soon.


  18. Hi Tor,

    Just wanted to say what a truly inspiring person you are, I feel very humbled today and very daft for having some of the "worries" I have..!
    Hope you're feeling better today and have got some of the energy levels back up following your visit.
    I will enjoy following your blog and look forward to when the transplant comes through..! Keep the faith..

  19. Hey Tor,

    Don't give up. Whenever you think of giving up, just remember there is a God that is by your side always. Just continue to have faith, and leave the rest to God. You are a beautiful person who is an inspriation to others. Have faith, have faith, have faith and everything will be fine. God will guide you through this tough time. All will be well, just have faith in the Lord.

    Sai ram,


  20. Hi Tor,

    Firstly, you are very brave, and also very determined, I can see that. You show more strength of Character than many twice your age, and that is a huge accomplishment in itself!

    I would like to share something with you that I think would help you, but I'd rather not doing in full public view as its very personal (and quite long) - but don't worry, its nothing creepy! Its regarding my own precious Daughter, and I would be honoured if you would get in touch with me.

    I see you don't have an email available on the site, but my email address is shellbaileyuk@gmail.com (please world don't spam me!), I honestly think what I have to share may help you so please get in touch! Btw, you are right, they are lovely shoes in the Photo and you and your Mum, you both look lovely! Take good care of yourself, hugs, Shell :)

  21. Your attitude is truly inspirational to those of us who think an average day can be stressful! I'm sure that your positive way of thinking will have a huge impact on your recovery when that call comes.
    I'm on the organ donor register but if I wasn't I would certainly be signing up right now, so it's a great thing your'e doing by sharing your experiences.
    All the very best of good luck to you. XXX

  22. Hey Tor...

    I'm another visitor pointed here from the BBC website and I cannot add much to the many wonderful thoughts and comments above.I'm not a particularly religious person, but I will say a small prayer for you and hope that the positivity displayed in your daily fight against adversity is rewarded with a long and happy life, a life many of us take far too much for granted.
    Pete (London) x

  23. nice to see your courage to face life... Praise God.
    God with us.


  24. Hi Tor,

    Another newcomer to your blog and I must say your courage is very inspiring. I truly do hope you soon get your wish and I will be thinking of you. I have added your site as a favourite and will check your site periodically to see how you are doing. All the best.


  25. Keep going! Every day might be a battle but it is a day closer to transplant hopefully. Keep strong - we are all with you x

  26. Hi Tor, I just wanted to tell you that I registered on the organ donor list tonight after reading the BBC article about you- I followed the link in your twitter feed. I've been meaning to do it for ages and I'm ashamed it's taken this long. I wish you all the strength and luck in the world. Ax

  27. Hi Tor,

    Another bbc visitor, and another person very ashamed to have not signed up for organ donation before! Have done now.

    Massively moved by your blog, you're a true inspiration and I wish you all the best. I'm sure you don't need me to say it, but keep fighting, stay strong and never give up!

    Steve x

  28. Im so proud of you and the fact that i can call you my best friend. All the awareness you do is inspiring, you truly are an amazing, beautiful person. You know I love reading your blog, and its fantastic to see so many other people on here offering so much love and support :)

    love you lots xxxxxxx

  29. As a cf sufferer myself i really feel for you.

    Please God you get that call soon with the perfect lungs, you deserve it.

    Angie (Belfast)

  30. wow! look at all these amazing comments!

    its so nice reading them, I was touched so goodness knows what you were like!

    As always thinking of you,

    sending hugs xxxxxxx


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