Times Update

It's been a bit of a tough week since I last posted, nothing major but just the annoying little things that work together to wear you down a bit. I've still been having a lot of back pain and also sciatic pain in my hip and leg which is very wearing. I hate taking painkillers everyday but also refuse to sit in pain all day so I've been trying to take as and when I need but without suffering too long.

My body also seems to hae made the radical decision that it doesn't need any sleep, I don't think it's thought this through very throughly. This week has been very bad for me sleeping and I have regularly been awake at 4am which as you can imagine doesn't make me a particularly happy bunny. It has amazed me that my body is so weakened by lack of sleep. Folowing a very bad night not only am I exhausted and over tired but left feeling pretty unsteady and weak generally, it's much harder to breathe and get through the day. I'm really tired when I get into bed and it's a job to get up/move at all but despite being so physically drained my head just won't go to sleep. It's not even that I'm stressed or going over things which has been problematic in the past, I lie there feeling relaxed but 3 hours later I'm still lying there without having slept. I've tried all the obvious tricks but its still very hit and miss so if there isn't an improvement over the weekend I may have to ask for some help from my CF team on Monday when coincidentally I'm at clinic. Not keen on the idea of sleeping tablets if I'm honest so stuck in a bit of a dead end.

I mentioned last time that I have recently done an interview for the Sunday Times and I can now tell you that it will be in the paper this Sunday (21st). Please buy a copy as I particularly enjoyed this interview as it gives me the chance to talk about my wonderful mum and for you to read about my wait for transplant from a different perspective. Also should mention that unless you are registered (for a fee) with the Sunday Times website you wont be able to read the article online so if you want to read don't forget to buy your copy! I will see what i can do about getting a copy (possibly scanned) onto the awareness section but making no promises.

Will update again soon to let you know how clinic goes on Monday.


  1. I shall definitely be buying the Sunday Times this week, thanks for letting us know.

    I wake at four every day, but I do get to bed early, being very tired after a day at school - not the same as you at all. I hope things sort out - lack of sleep is miserable.


    J x

  2. Just read the article, not ashamed to say it made me cry.

    I remain in awe of you and your family.

    Keep fighting the good fight, your turn will come :) x

  3. Tor and Chris have just read your article in the Sunday Times. You are both incredibly strong, inspiring women! You have made me feel grateful for everyday things and I salute your courage, determination and also the fact you are doing your degree! Well Done and keep fighting, hope you get the transplant very soon.
    You are both special women. Rosie

  4. Wotcha,

    Came across this blog as a result of the article in the Sunday Times.
    You and your mother are both absolutely phenomenal human beings, thank you for being so unflinchingly honest about your life, and so courageous in the face of all its hardships xx

  5. Just read your article in the Times. It's so lovely to see a mother and daughter so close. Tor, keep fighting! You've got this far already and you have so much to live for. Thank you both for being such an inspiration to all mums and daughters out there!

  6. Just read your Times article and went straight to your blog. You and your mum are inspirational.
    Amy x

  7. I share your dislike of painkillers, they can upset the stomach and cause digestive problems, which I guess you can do without... but I have fibromyalgia and have to take them regularly to function. I'm going to whisper here because it's a delicate subject, but have you asked your doctor about Voltarol(or similar) suppositories? They are brilliant, don't upset the stomach, and if used last thing help you to sleep because it eases any aches/pains. The continentals think we are mad shovelling pills down our throats as supps work faster with fewer side effects. Just a thought. The other thing I've found helps a lot is using a silk fitted sheet; you can change your position in bed much more easily, it cuts down the number of times you wake which has to be a bonus.

  8. I was very moved by the article about you and your mother in the Sunday Times. There is a girl in my daughter's class who is 13 with the same condition as you and she is one of the most beautiful, cheerful people I have seen. She radiates goodness and sometimes her friends have to stop her from laughing so hard as it can make her pass out.
    You have already shown what a spectacularly special person you are, as has your mum, and I wish you ever-continuing strength and resolve in getting your transplant. Maybe one day when you're stronger with the transplant you can inspire others to live their lives with such determined fervour.

  9. Hi Tor,

    I read yours and your Mum's article in the Sunday Times today and was incredibly moved by what you both had to say. Have started following your blog now and what I have read so far is brilliant writing and truely shows how brave and inspirational you are. It is mind boggling reading about something like CF from a first hand perspective and has really made me think hard about some things.

    I hope with every fibre of my being that the call comes for you and you get some respite of the suffering you currently bear. Keep going :)

    Much love to you and your Mum xx

  10. I have just read the article in The Times and just wanted to wish you and your mum all the very best. I'll say a little prayer that you'll find a donor quickly. Sue x x x

  11. Hi Tor
    have just read you very inspiring story in the Sunday Times mag. I have 3 daughters,all in their twenties who I get on with so well like your Mum. I so admire your bravery and hope - and it makes our problems seem tiny in the scale of things.

    I am on the organ register and will make sure my girls are too.

    Well done you - I really pray that you will have your transplant soon and the chance of a normal life which so many of us take for granted. You are an inspiring girl!

    With all good wishes

    Carolyn King

  12. Dear Tor,

    I read your mother's article on you in the Sunday Times today. I'm so sorry you're having to go through all this.

    I wish there was something I could say that might help. I'm positive that you're going to get your transplant, and after that you'll be a fabulous musical actress. Keep your chin up. Getting a degree throughout all this hell is EXTREMELY impressive.

    All best wishes,

    P.S. If you don't mind my saying so, I think you're very very pretty. So there.

  13. Dear Tor,

    I read you article in the Sunday Times and I just had to get in touch. I can't even begin to imagine what you are going through. I was very ill with an adrenal condition which left me house bound for about a year but that is nothing compared to what you have to do. Keep strong! The world needs people like you, and when you have your transplant you will have so much to teach the rest of us.

    I am praying that you will get that phone call very very soon! All my love and enormous hugs to you and your Muma

    S xxx

  14. Tor,I read your article in the Sunday Times last night and have been touched by your story and honesty. You are an amazing person and you will get your transplant. Keep up the work with your OU degree (I have done OU too and have thrown my books about too!!).
    You are an inspiration.


  15. Just read your article in the Sunday Times. What an inspirational story and what wonderful people you and your mother both are!

    As a kid, I was very close friends with a girl with CF and sadly she died when she was 15, but she remains one of the brightest, most happy people I have ever known and I am constantly thankful for the time I had with her.

    I signed up for organ donation years ago, but I just went to the website and did so again, in case my details got lost somehow.

    I hope you get the call you want very soon. Keep fighting!


  16. Hey tor and chris,
    just read your article in the Sunday times and it was so incredibly moving. You are both so inspirational, and it is amazing how close your relaionship is. I am very close to my mum too and she has done so much for me so it is wonderful to hear about you and your mum. I really really hope you get a transplant, hang in there and stay strong. Xx

  17. So pleased that I bought the Sunday Times and discovered your blog. I've been reading through some of youe old posts and you are SUCH a good writer! Really looking forward to reading more xx

  18. I stumbled across your blog a few weeks ago and im now hooked.

    You have such an honest perspective on everything you experience and i think its fantastic.

    Just remember you have lots of support out here and everyone is thinking of you.

    Big hugs

  19. Brave and excellent girl, and family. I suppose you get suggestions ad nauseam, and some prefer only to do as a doc suggests but I suppose you've looked into proteolytic enzymes? Some, like serrapeptase are mentioned in connection with fibrinolytic properties and lung complaints if you dig on the web eg.

    I wish you all the best for improvement very soon.

  20. Hi! I have just read the article in the Sunday Times Magazine and after reading it - I had to come online and find your blog. I just want to say you and your mother are such an inspiration to everyone and your relationship is really beautiful. Every single person reading this article will feel Your strength and determination and you have touched us all and given us all some of that positive fighting spirit- Thank you!! All your dreams will come true - I know it!!
    Steph xxx

  21. Hi Tor, well done for all you've achieved. I also have CF but unfortunately i was told this year i am not suitable for a transplant. For the last 10 years my lung function has fluctuated between 16-20%. It was around 30% in my 20's I turned 40 this year and I'm currently a Director of one of the main 4 UK Banks. My employer doesn't know I have CF and I live my life making sure I don't walk upstairs with others etc like you mentioned. I can probably walk about 50 metres on the flat before stopping for breath and do overnight feeds and nebs. I know we're all different but wanted to say that after 3 years of waiting, don't give up hope if the transplant doesn't come. I have a great life and feel very lucky with what I have. I wish you every success.

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  23. Hi James,

    Thanks for your comment, would be happy to get in touch but haven't got an email address for you so if you can leave one I'll be in touch. alternatively I'm on facebook or twitter so message me privately and I will get back to you x

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  25. Just read the article too and just felt I had to write and say keep your head up!

    And... it inspired me too as I have my own problems that get me down but are no way as bad as yours... see my blog...


    so thank you!

  26. Hi Tor, like loads of other people I read the interview in the Sunday Times and I wanted to come and tell you I think you and your mum are amazing and your story is amazing for its honesty and for how it made me realise we should all be thankful for what we have, even the little things. Also love The Phantom reference :) God bless and I pray that call comes through.

  27. Great article in the Sunday Times. You are both inspiring ladies. Health and happiness for the future.

  28. Thank you for your wonderful interview in the Times which I found incredibly moving and special. You are both such brave, inspiring individuals. I truly hope you get your transplant one day and will continue to live an inspiring life. I hope you are both being looked after in the ways that you need.

    Be well,


  29. Hello Tor
    Read the article in The sunday Times and just wanted to say how inspiring you and your Mum are. I really really hope you get your transplant. Just keep believing it will happen and it will!! until then I wish you good health and the best of luck Tor -you deserve It!!
    much love

  30. Hello Tor,

    Just read the article on you and your mum today. The deep bond you share is palbable. You (and your mum) struck me as being tenacious, generous and humerous, fantastic qualities that will keep you going for a long time yet. I have my toes and fingers crossed for you.

  31. Hey - I read your article in the Times last week and I found it and you and your Mum to be very inspiring. You two are great. I hope it all works out well for you with the Musical Theatre too.


  32. Hi,

    I suffer from panic attacks and each one frightens the life out of me. However, after reading what you go through, i am humbled. I honestly couldn't go through what you are going through. I do hope you receive those transplants soon. You have inspired me.

    John x

  33. Hi,
    Read the interview in the paper yesterday evening and cut the bit out for the blog address on web.
    You and your mum are amazing and I wish you all the luck in the world for that transplant, and really hope that it happens soon and gives you a bit or all of your life back with time!!!!!
    Lots of love to both of you,

  34. Tor and Chris, a big bunch of Sunlight, a huge ball of it full of healing and all the Good that exists is coming your way all the way from Saudi Arabiato help you to that transplant. We read your story in The Times and are bouyed and lifted up by the example you have set for all of us to hold our heads high!
    Ryan and Cecile


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