I’ve been on intravenous antibiotics for almost 3 weeks now. It’s pretty exhausting. The steroids I was on didn’t make me better and so intravenous antibiotics were my only option. I was well enough not to go into hospital but now at home I’m completely exhausted. Getting up at 9 and doing drugs and physio all day until 11pm is really tiring.

No words can express how devastating the past few days have been since the death of Anita while waiting for a transplant. I feel like I will break in two if I talk or write about it. We were born in the same year and she wanted to be a journalist. She would have made an incredible one.

I dropped a shampoo bottle on my foot two weeks ago and because of my osteophenia (bone thinning) it chipped my toe so I can’t really walk or run on it. I really wish I could run because it helps me handle things when I feel like I can’t.

I can’t wait to be finished iv’s but right now I just feel unwell and can’t decipher whether it’s just enormous grief or actually I’m exhausted because of infection. It takes so much longer to defeat them now and it takes so much patience.

My cat George lives with my parents because I don’t live on a ground floor apartment. I really miss him. Cats are good at times like this. Human’s generally aren’t. There are no words that work. Cats just sit there and keep you warm.

For some reason this really resonates with me today. It makes me think of Ireland, and where we can go if we just let go. The greatest action right now is inaction. Which would be the biggest mistake. 'All that you fashion
All that you make
All that you build
All that you break
All that you measure
All that you steal
All this you can leave behind
All that you reason
All that you sense
All that you speak
All you dress up
All that you scheme... '


All the rotten stuff we could leave behind through bravery, integrity and choice.


 and the lines 

"You're packing a suitcase for a place, none of us has been. A place that has to be believed to be seen."

We can't have change unless we believe in it. What we think we become. This is all pretty simple, but this song just made me think of that.

Steroid High

I started on steroids yesterday. I haven't been on them since I was very young and did not quite appreciate how completely bonkers the experience is. It's like I'm hooked up to a drip of sugar with match sticks holding my eyes open. Even when I've had too much and feel high and like I'm going to vom, I am still wide awake and restless. I went to the gym this morning at 9am (unheard of in this house!) because I was so wired. The docs said if a week of these guys combined with another oral antibiotic don't work then I have to go back into hospital on Monday. This concept is frustrating to say the least. Particularly due to the Swine Flu/Vomiting Bug signs all over Vincents at the moment. Getting into Clinic on Monday was awkward enough. My PFT's are down again and my white cells are up. Nothing is drastically bad, just annoying. The cf nurse said to me 'I haven't seen you in aaages', and that was seriously depressing. I had been thinking it that morning in the shower. Gosh I haven't been in here in aaages. Actually, I got off intravenous antibiotics on December 16th. And we thought it was a life time. I'm practically living there the past year. How boring.

The waiting part of CF is boring. I have so much to do, I am so damn lucky that I have so much to do but I can't do it all. I know exactly what's wrong with me. I'm half way to an infection and getting the damn Swine Flu/Flu vaccine brought it on. I hate that I know that. I knew that was a risk when I got it because of the multiple resistancies I have in my sputum. If I didn't get it I was in an equally difficult situation. One bacteria in my lungs is fully sensitive to all antibiotics and the other is fully resistant. One can be treated and the other can't, essentially. So they try all of these different combinations of drugs that they had to test in another country because they couldn't test here that took over three weeks to come back. It would be great if these steroids worked, and at least there is something new to try and I'm well enough to try it. I need to stay well next week to finish editing my book and hand it over on Friday forever. It will feel so fantastic and I think will do me a world of good. I really want to sink my teeth into the next thing.

I bought Gender Trouble (Judith Butler) and The Beauty Myth (Naomi Wolf) today, so they'll keep me company next week if I have to go in. Reading The Good Citizen at the moment too. Still listening to My Dark Twisted Fantasy. There is no escape. Strangely while listening to it today on Georges Street on the way back from scoring some

a random strung out looking lady started hitting me. It was so random and not a big deal, but scary non the less. And then Mary Harney resigned, but I had to check the news twice because I felt so wired in this crazy drug combination. Whatever anyone thinks about her, that job has got to be one of the hardest in this country.

Life Lessons

This is an amazing one : http://www.youtube.com/watch?v=PEQxEJ5_5zA

Mini Marathon Musing

Oh Yes, and this is me fuelling up pre my run/crawl in Herbert Park the other day.
Cool, eh?

Running is extremely tough at the moment. It's like my body has never run before and isn't sure what to do. My legs are fine and could go on for hours, but my breathing just can't keep up with it. I know it will just take time to get back there, but I'm impatient! Don't my lungs know I'm from the NOW generation? As in tweet, iphone, blackberry, conveyer belts of sushi I want it now! Ahem.  ANYWAY.. I've been slacking on my training too, with this cold thing, which can't be good news as I have roughly 5 weeks left..

I'm doing the Flora Ladies Mini Marathon as part of the 1 in 1000 team. The team is aiming to raise over 200,000 for  Crumlin Children's Hospital to build en suite rooms for cystic fibrosis patients. Last year I would have ran the whole thing, but with health this year I definitely won't manage to run the entire 10k but I can give a walk/ run a shot! And if I can, that means YOU can too.. yes, YOU there! *YOU*

www.runningforcf.ie (or walking/or crawling-- and you have to be a woman - and NO DRAG ALLOWED? SOB. It's true. They'll kick you out!) (Maybe if you dress up real good... like this fabulous lady --)










Give it a shot men folk!










Although I doubt you'd manage to look as good as Miss Panti. But you could try eh?
Alternatively, you can throw me yer spare change at www.mycharity.ie/event/run-orla-runnnn
and show your support.


O X

Book Stuff.

So, I'm pretty bad at keeping up with this and am not really sure anyone reads it. But if YOU do, then, just so you know, I'm going to make  a bigger effort with it. Particularly now that my manuscript is finally finished. No really, I actually did it! Phew!

I handed in my final draft to the publishers three weeks ago - which is actually their first draft - but I'm not thinking about that! I took a week off, which actually ended up being a week where my good friend ferried over - because of the apocalyptic volcanic plume- and checked out the IFI Stranger than Fiction Film Festival. (http://www.irishfilm.ie/) (I love the IFI, not least because of their exceptionally delicious brownies.)

Last week I started back work experience in the News Room. Things went well as I bused it into my first marking - feeling like a pro whilst sipping my Capri Sun - to the first annual Arthur Guinness Awards. It was actually great fun. Because A - there were incredible people there. and B - I know the structure of Awards Ceremonies. So it should have been a breeze!

And it was great, apart from the sore throat that tickled me on the way back from the Guinness Storehouse. By Wednesday morning no amount of coffee and vanilla extract (my new - probably odd- poison) would keep me awake. By Thursday I was working from home. On Friday I was.. well, let's just say I haven't been in work since. Which is extremely frustrating.

What I love most about being in the newsroom is the way I just get sucked into the rhythm of the whole place. I know I'm meant to be running off to markings and covering things. Bam! Cf, cold, clinic on Monday, lung function down, weight down, mucus up. Grr. So this week has been about recuperating. And rewriting the end of my book....

My editor mailed me the cover last week and I didn't know whether to cry or throw up. Not because I don't like, it's just very odd. I'm on the cover - which wouldn't have been my first choice - and it's very weird to think I am willingly exposing my life the way I am.
My friend, who is also a writer - actually he is an amazing award winning one- told me when I started writing my book back in 2007 "A Memoir is a work of Ego". I told him he was nuts, my Ego has nothing to do with this.  Er, maybe I should have thrown it in there.

It really doesn't though, or else I wouldn't be able to say all that I say.  People keep asking me if they're in it and what I'm saying about them. It's fun in the beginning, but then it's a head wreck. I like that the book is so honest, I just hope it doesn't bite me in the ass. I've got my flights booked for a quick get- away to a secret location where a faux identity awaits, anyway..

xxx

Late 2009

Interviews after The Irish Tatler Woman of the Year Awards, November 12th 2009 :

Here's a pic from The Irish Times and interviews with The Sunday Supplement and TV3.

Awards always freak me out a bit, especially one's I don't know I'm getting! But everything went well and it's such great recognition for CF.

http://www.irishtimes.com/newspaper/ireland/2009/1114/1224258816373.html (The Irish Times)

feed://audio.todayfm.com/sundaysupplement.xml (The Sunday Supplement with Sam Smyth)

ttp://www.tv3.ie/videos.php?video=16173&locID=1.65.74&date=2009-11-16&date_mode=&page=1&show_cal=&newspanel=&showspanel=&web_only=&full_episodes=

(TV3 Ireland AM)