Saturday, 5 February 2011

Urge to Blog

Rushing the laptop on just to get to this page as i feel the sudden urge to blog. A rush of words coming to my mind and feelings I feel I need to write.

Today I am sick, I escaped the hospital for a few hours with my gorgeous fiance to go view a wedding venue, 02 at the ready, make up and hair done. An achievement for me as the last few weeks have been truly make up free. i wanted to look nice, these people could potential be hosting our wedding and i wanted them to think we were nice people. You know a wholesome couple (chuckles and sighs to self). The wedding venue just wasn't right, but then when your original plans are taken away from you i wonder whether anything will be right in comparison. But no it wasn't Cyprus, i knew that, I'm not daft. But it just wasn't right either.

We then stopped off in eggesford forest and chomped on some rather tasty pastys. I was starting to feel unwell at this point, getting cold and my head started to feel blurry as i like to describe it. I turned the oxygen up a notch and felt my head ease and my breathing. The drive back i sat in a haze not really wanting to talk, feeling very tired and poorly at this point. Finally we made it back to which we cuddled up on the bed and feel asleep, make up removed, hair slung back, joggers on and Stuie cuddles to ease my chest pain and temperature. Stuie does make an awesome pillow and always makes me feel safe and less stressed.

The last few days have been good, not in the sense of health, things health wise are continually up and down and i know i am getting better but then i seem to take a few steps back like today. But i mean mentally, the appointment coming and going has put me in a really good place. I realise now, that I'm not going to slip through the net because i always look so well, something that is certainly not true. But i have a really good chance at my second chance, so for that i feel utter relief, I have had some truly big smiles on my face, i know where I'm going now and i am determined i am going to get there. Its only now that i can see how stressed i was about the appointment, now that its over and i have the answers i wanted.

Also I have been receiving some amazing feed back from this blog, people being truly supportive, I started writing this blog more for you, the reader than for me, to help you understand things you may not have otherwise, about cf, transplant and organ donation. But now i realise I can draw strength from everyone out there sending there support and love. So thank you for that. Iv also managed to reconnect with people who i used to know from my old centre in Hillingdon, now nicknamed Killingdon (yikes) I am also having an article in the express and echo on me and this blog and there to print my blog every now and then in the paper although we are unsure on frequency yet, but i find this very exciting.

So although i feel very poorly, I'm feeling very positive as well.


  1. Best time to blog is when you feel a natural urge to :) You describe things really well Kirstie - takes me right back...I know exactly the "fuzzy head" feeling you mean.

    Hope you're feeling better soon - are you getting some O2 sorted for home? What with Harefield saying your heart was having to work hard I think this is really really important.


    Emily xx

  2. Hey hey!!

    You started writing your blog for the exact same reasons that I did and your off to a great start!! Just keep being as honest and people will keep responding :)

    V xx

  3. See you tomorrow missy.... Shame you didn't get a great Vibe about the venue but hopefully you'll find somewhere soon....x

  4. Yay! Keep writing it's good to read and great news about the Express and Echo. Reminds me of my uni days in Exeter!

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  6. So happy you are feeling well mentally, even if your body sometimes doesn't cooperate! I just found your blog and love it! I hope you don't mins if I add you to my blog roll...

    Stacey @

  7. ive enjoyed reading your blog(with tears x), my granddaughter mollie as cf and its given me abit of insight to how things are, my daughter is 21 and a carrier of cf and also her partner they have 2 girls mollie 2 on the 19th feb and maisie (non cf) 8 weeks tuesday, my daughter stacie is setting a fund raising day for the 28th may shes gone all out and im really proud shes not just sitting back feeling guilty, i wish you all the luck in the world your amazing to type a blog your helping others love lisa xx @babywildeaj on twitter

  8. Hi Kirstie, I love your blog and think you're so brave the way you're facing your fight. I'm a writer for a women's magazine and I wondered if you'd be interested in doing a feature with us about CF and the way you're dealing with it. If you'd like to find out more please drop me an email at

    Kindest regards, Dominique

  9. Hey Kirstie,

    Good news about the article. Sorry to hear you are feeling so rough, i hope you make a turn for the better soon hun.

    XxxCarrie Meadesxxx
    P.s. i am quite handy when it comes to weddings. If u need help Alison has my number babe. Xx

  10. hey hun my hayleigh and i am 20 yrs old and suffer frm bronchiectasis which is very simular to cf and i struggle at the best of times!! reading ur blog has inspired me!!!

    i think ur amazin hun! ill b following your blog dont give up hope xx