Friday, 24 August 2012

First night out!!

I'm getting rubbish at blogging these days. Not had a good week this week, I mean I'm still better than I was months ago so I can't complain too much and i am still very grateful to feel as good as I do.

Barely had any energy since Tuesday feel so tired all time, soooo much stuff keeps coming up and becoming quite tight chested at the moment and breathless, haven't used oxygen and haven't checked weather I've needed it or not...it's so easy to slip back into old habits, got back into a routine of not using oxygen or needing it that maybe I might be neglecting my body of it or not recognising when I do need it...
So maybe I should keep an eye on that!!

Also this week Iv been living on paracetamol, been getting the worst headaches ever, ones that literally sting when lifting my head!! Very much disliking that! But hey Ho things can't always be perfect!

I've started taking my tablet with bacon now to make sure im getting lots of fat with it, also heard that taking kalydeco In between eating fatty foods can make it work better!? Just trying everything to get the most out of it! But funnily enough since doing that, that's when the headaches have started so god knows!

Something that has crossed my mind is I might have an infection? But I really don't no how I can tell the difference at the moment. I mean normally i know when I have an infection because I struggle more, or bring up more mucus, or cough more but since starting kalydeco thats most of the symptoms lol so it's a tricky one!
I have a hospital appointment at the end of this month I think but I think if I carry on and don't feel 100% il get myself to hotel Brompton, don't wanna take any chances anymore.

Anyways onto a brighter note!! Was a big brave girl last Saturday and took to a night out in my local town of Weybridge with a few of my mates! First time out since match 2011-and I loved every minute of it! Haha

When it got to 10pm and time to take my kalydeco tablet I ordered a nice cocktail and a packet of nobby nuts to take with it! Think the barman thought I was a bit of a weirdo ordering nuts-lol sod him, it was the only fatty thing I could think of having with it, was a bit early for a kebab wasn't drunk enough yet! Haha

So yeah I did it my first night out! I was Sooooo nervous going out and felt like a little kid just turned 18 again and never been out before! There's no way 6 months ago I thought without having some new lungs I'd ever go out again! I got all emotional about it that night thinking how scary bad things had got and how much life has changed again! Just too thing a little blue tablet could work such miracles!

That's all
Here's a few piccys!
Love love xx

39 days since started Kalydeco (5 weeks)
29 days off transplant list


  1. Hey love, looks like you had a good night! Glad you could get out and enjoy yourself. I suppose you could check the colour of what you bring up to see if you do have an infection, or if it is just the pill doing what it does. Anyway sure the brompt will check you all out. Hope the headaches disappear soon! Got me wanting bacon now :-p xxx

  2. It's so good to read your blog and hear that you.'re feeling good. So great that you got to have a night out, looks like it was a blast!

  3. Ops, I think I meant feeling better. It.'s quite an inspiration that you are now off the transplant list. Hope things continue to improve.