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)

Dec 2009

03rd December 2009.

Yikes! I haven't written here in ages. Since June I've been :solving the heymoptosis problem, taking lost of iv's and getting my exercise tolerance back, doing shifts in The Irish Times newsroom and spending November at the NYC Marathon with the Cystic Fibrosis Association. I was there supporting incredible people who ran the 26.2 miles for people with CF in Ireland. Some knew people with CF, some were family members and others just wanted to help. The spirit was invigorating. Here's an Irishwoman's Diary I wrote for The Irish Times about it :http://www.irishtimes.com/newspaper/opinion/2009/1104/1224258025306.html


I also received The Irish Tatler Woman of the Year Award which was incredible and so shocking this November.  I'll blog properly about it in the next few days. Awards remind me how the Irish people have put CF at the top of their agenda, and it gives me strength - particularly if I've been in a stick hospital situation, or heard of a friend stuck in one.
I'm still working on my book, entitled Salty Baby, which is coming out in Autumn 2010 with Hachette Ireland. I'm finally getting my energy back and things have picked up healthwise. CF is fickle, but right now it seems to be on the right track! Hoping to finish IV's tomorrow and jump back into work on Monday - I can't wait!

Orla xx

September 2009

I haven`t blogged in an awful long time. Most of the past few months has been spent in and out of hospital - which is where I am again at the moment! Reading Eckhart Tolle`s book A New Earth has really helped reinstate a feeling I`ve been having for a while now about inner peace and sense of oneness with nature that just kind of melts all the external, material stuff away. That said I went to the People of the Year Awards on my Saturday on release and wore the most beautiful dress from Roccoco beside the Westbury in town. It was made by a Korean designer and is a soft mushroom colour. I`m not big into dresses of things that pull you all together, but this looked like it did that and yet I was still so comfortable I felt I could flit and float around if I needed to. I set the colour off with gold heels nad a gold headband from American Apparel. It worked really well and even though I looked super pale in the photos it was the most comfortable I’ve felt in a long time. Trying to get the outer world/inner peace balance going on because having a sticky patch. Nice not to have to worry about going up on stage! The recepients this year were absolutely incredible. It was amazing to see it from the perspective of an observer- you don`t fully absorb it when you`re winning, it`s all so surreal. I cried for a lot of the ceremony(sap!) - it was incredible. Will blog more tomorrow.

Ketchup Daze

A running joke I have with a friend of  mine who has CF is “ Stop squirting ketchup in your sputum cups to get attention!” which of course no one is. It`s a funny way to handle irritating moments like yesterday morning, when you wake up coughing up “ketchup“ from your lungs. Not the nice tasting kind. You should really call the hospital. It`s the best thing to do. Or you could just grab some breakfast and get on with the day. Because sometimes it “just happens”, as all who doctors, who know not what to say, at some time like to exhale, exasperated. It wasn’t really the case yesterday. Sensible or stupid - I could have been either. I could have waited to see if it chilled out and cycled to UCD as planned. Stupid would have been much easier, but that in itself would have, well, been stupid. So I called my team and an hour later I’m in one of the two examination rooms being told “Blood is black and white. It’s usually nothing big, just an indicator of infection.”. So technically I could go on home IV`s? “… But sometimes it’s about a blood vessel that starts up and won`t stop. It doesn’t matter if you`re standing on Nutley Lane and this happens. If you bleed and it doesn’t stop. You bleed and it doesn’t stop”. You see I knew that, deep down I knew that and I`m not a lunatic. But it`s not always the case.


I got a bed that evening. I was extremely lucky. It was a case of refusing to go to A and E, but the severity of the situation being so beyond me that I knew I was going to go to A and E, but had to fight obviously in the hope that I wouldn`t. A bed popped up because there are not a lot of people in at the moment, and maybe because I said I was already mentally planning to chronicle my time in A and E. I don`t care what it was, but I got a bed. If I can get a bed every other CF patient who needs immediate treatment and observation, as my consultant said I did, should get it immediately. After my first dose of IV`s I realised how yuck I actually felt. I was feeling that nauseous grumble of mucus in my chest. I fell asleep reading The Universal Journalist, dreaming about actually working for longer than 3 weeks. I did notice that half of the ward was closed though. They deployed the nurses to other areas and then had to reopen six of the 12 closed beds to alleviate the A and E. They then could not get the nurses back and hired agency to man the ward. Right.







You have a lot of time to think about these things hanging in a hospital bed. For lunch I ordered roast chicken, boiled potatoes and peas. I had been tempted to order the Chicken Cordon Bleu but I couldn’t’t be sure about it. Roast chicken was usually safe, not too tough. It strayed far from it’s predecessors and it’s accompaniment let it down further. Three hard boiled potatoes. It made me think of an episode of Wife Swap I watched recently, the only episode I`ve ever watched. Rhona Cameron was on searching desperately for organic food in a fry filled house with a less than charming, distant husband of another woman who saw the role of a wife as subservient. There`s a scene where she makes beans on toast and looks like she’s about to cry. After six weeks in here, three weeks out and now being unexpectedly lassoed back in, that’s how I felt.



Mountains of peas, carrot trees and rivers of gravy flash through my mind waiting for dinner. I ordered something safe. It will be good. Then the spuds are so hard the knife gets stuck in each of them, the peas are dry and the chicken’s exterior is hard and rough, the inside not much better. That’s where the ketchup comes in. Can I please have some milk and ketchup?, I ask the giggling kitchen lady. Giggling because she brought me in a delicious looking roast beef, turnip and mash potato a few minutes previously, that I had to refuse. Alas it was someone else`s grub and I was holding out for my super chicken, smooth and tender. This sent her into fits of giggles - Maybe she knew something I didn`t? Ketchup. I was still waiting twenty minutes later as my food grew colder. In fairness it`s standard routine here to deliver all condiments after the meal has been eaten. I shouldn`t really have expected anything different.

So I ate the dry hard potatoes and picked the purple bits out of the chicken and watched the kitchen lady, roughly my age, stroll past my door towards the kitchen with tea and then back towards the ward door, her purse tucked under her arm. Potatoes - so easy to cook. I eventually asked a nurse for both. She brought milk but she didn`t know where the ketchup was. I got it at 1.15, 45 minutes after I got my dinner. Yum.



It may seem like an example of mild neurosis that I`m writing this here. But it’s just a small example of how disconnected different parts of the system are. One of the most important things I can do in here, apart from take all my meds, is fight my infection with calories. I loose thousands of them each time I have an infection, just breathing and coughing. Food is so important, and antibiotics sometimes destroy my appetite, as with a lot of people with CF. So I`m not hungry, but I know food will help my recovery which gives me the drive to eat what`s in front of me. I know I need more than what`s in front of me to fight the infection. Good food would be nice.



Given the fact that I have enough energy to be bored, but not quite enough to continuously read, I`ll probably update this most days. With thoughts, musings and what ever else pops up.

Peace out!

The Tubridy Show and Clinic.

Today I arrived in RTE at the ungodly hour of 8.30 to go on The Tubridy Show with the new CEO of the CF Association of Ireland, Philip Watt. I was waiting in the canteen oogling some faux energy drink and diet coke, trying to decide which one to devour, and trying not to fall asleep. I was reading The Irish Times when Philip arrived, fresh from his flight to Dublin. He interrupted his family holiday for the programme - he`s a winner! I am so excited about him coming onbaord given his extraordinary previous work.


The chat was mostly about the aftermath of the campaign and it was strange. I usually only partake in media interviews if I`m campaigning, so it felt kind of void, or something, to do one without the massive urgency - but of course it` s always important to highlight the issues and keep people thinking of them. Particularly with July coming up, which is when the unit is meant to be going to tender. The next step may be our biggest challenge yet, depending on the outcome. With the economy, it`s impossible to know, although things seem to be going ok at the moment.



The line of questioning was nice too, I suppose. It`s good to show off that Orlaworld is not, in fact Flat, but very very round and full of things that have nothing to do with CF. It`s funny when people identify you with something they just immediately approach you and chat all about it, regardless of whether it`s in a supermarket, the street or even the ladies toilet! Harper Lee says in To Kill A Mockingbird “Folks is just folks”. It`s one of my favourite quotes. I’m glad I can campaign and talk about the important factors relating to CF in Ireland, particularly because there are so many who cannot, or died trying



CF is certainly not all doom and gloom, but facilities in Ireland are so bleak to that in other countries. The Pollack Report stated, in 2005, that Irish Healthcare for CF patients was at a dangerous, emergency level and needed to be rectified immediately. Today’s interview was more a wrap up of the end of the campaign, though it was a bit more tough than I expected. I suppose I felt strange about saying my two friends names on air who had passed away. In March/April of this year when I went on Joe Duffy`s Liveline it felt like a necessary evil, like it was the only way of getting my message across, and I knew they would have wanted to be part of it. Today it just felt a bit nausea, because I had healed that part of myself and gotten as much closure as possible.



I did get to mention on the show about my book though! I signed with Hachette last week and will have my memoir out in Autumn 2010. Exciting and terrifying!

Here’s the interview: http://www.rte.ie/radio/liveplayer_av.html?1,null,200,http://dynamic.rte.ie/av/live/radio/radio1.smil







P.S. I went to clinic afterwards and had my first pulmonary function test since my lung collapsed. I had not been able to do it before because of the pressure breathing out that fast against the machine would have caused in my lungs. It went really well though and I can keep going with the exercise- whoopee! Yesterday I ran for 25 minutes and did my second round of weights, which included bench press. Challenging at the time, but soooo painful today. It means I did it right! I cycled to clinic too, which means I have to run tomorrow...

Exercise and a bit of background.

I`ve really been slacking with exercise the past month so decided to venture to the gym today. In fairness, I had no excuse. My bike, which went out of action about three months ago, is shiny as new and exercise is just too important. Eating an entire packet of choc chip cookies last night probably helped kick me out of Lazy Gear.
During campaigning last April my lung collapsed and I ended up in hospital for six weeks. Boring? Well yes, after the first three weeks, and once I was out of the "danger zone", I got hooked on... The Hills. So awful! But so... interesting! It works when blue birds are tweeting around your head in circles!
It`s hard to focus on reading when you`re on super duper drugs that make you float about the place like a 1960`s hippie.
I started running in October 2007 and it completely changed my life, and the way I approach my illness. After five months building up endurance I was able to run 5k and my lungs were so much healthier because of it. My lung definitely collapsed during exercise before a significant part of the campaign because I remember the extrememe sharp pain that hit me. I was stretching in the Cat Yoga position (although apperently some people call it the Child-- but I think that`s just weird! It looks like a sassy cat stretch!) Anyway, that`s when I got the pain in my left lung, and I lay there for a while cursing that my phone was in the dressing room. Everytime I tried to move it got worse, so I closed my eyes and just tried to control my breathing. After 20 minutes it subsided- and it didn`t come back. I had no idea it was a tiny collapse. So ... you can see why I`m a tad anxious about getting back into La Gym!

I love running though- the endorphins are the best kind of feeling, just like any sort of exercise whether it `s running, football, rugby, skiing or absailing! It took me a long long time to realise that I had to challenge my body, and respect it, in order to get to the best out of my life. Getting back into it was tough because my heart wasn`t pumping enough oxygen around my body to do any prolonged exercise and I needed to be hooked up to oxygen just to try a brisk wak.

As of Tuesday I am officially out of the danger zone. I pass Go, everything before being the 6 weeks in which there`s a 80% chance you can recollapse your lung. So today I went to the gym

Well actually, I cycled there and took it easy on the treadmill. It doesn`t help that my ipod got `lost` in the laundry the last time I was in hospital. Anyway, I had flashing images of Michael Jackson on all ten gym TV`s to keep me occupied. I managed a 3 minute brisk walk warm up, a 10 minute jog, a 3 minute recovery and then another 5 minute jog before cooling down. It`s a good base to start at. I did some strength training and core exercises too before hopping the bike home. I`m aiming for little and often to try and get back up there.

Last year I was at the UCD festival and ended up in the pit for... The Wolfe Tones (for shame!) My best friend Patrick knew a 4th year physio who was playing bass for them. Anyway, I got accidentally rugby tackled to the ground by a group of drunken beef cakes (thanks guys!) I felt two massive arms scoup me out of there, and all I could do was laugh. One day out of hospital, it was hilarious. Patrick and Sarah tried to usher me to the First Aid, DRAMA. I`m not into first aid when there`s no blood or breathlessness. A grazed knee and a achey foot does not a First Aid Emergencey Make. So I decided to go for a jog around the track later to prove I was fine.. A jog around the track with a previously aching foot does make a fool however. A big big fool who spent the next 11 weeks on a crutch because of my thin thin, osteoperosis CF bones- aggghhh! Such A Clever Girl. Not being able to do the Women`s Mini Marathon in 2008 killed me and I vowed that it would never happen again. When I had to stop running this time, I wasn`t counting down the days until I started again, in fact I was pretty anxious about it. I lost my confidence completely - Collapsing a lung during exercise does not exacty inspire it! I`m feeling up to the challenge now though. I shall take turtle steps and with one day down successfully... fingers crossed! Grrr!

Welcome

This blog is just somewhere to flesh out my thoughts, chit chat, exchange ideas and update about Salty Baby, my Memoir that`s coming out in August 2010.
Although it`s pretty impossible to talk about it right now. I`m watching Sky News right now and Michael Jackson is dead. This is less than 6 hours after Farrah Fawcett died this morning. This is the most insane day! Whatever about MJ and the controversy. He is the greatest entertainer, our generations Elvis.

The last time I watched this amount about Michael Jackson was in June 2005. I was at home in my parents sitting room chatting on the phone with my friend. She died a month later and I always referred to that time as That Time MJ was on Sky Forever. He really was the last of the classic popstars. Crazy.
I really bet Farrah and MJ`s souls are just floating around the place, relieved!

OK.



I`m writing a Memoir about my life. I`m 22, have an amazing life, have half a degree, amazing friends, a groovy apartment in Dublin City - and also happen to have Cystic Fibrosis.
In 2005 I started writing about CF patients rights in The Irish Times and have been campaigning ever since for equality for people with Cystic Fibrosis in Ireland. If you want to read about it it`s here :


In 2007 I was offered a book deal to write my life story with CF, but I was 19 and my life is not all about CF. So I decided to hang tight and get busy living, which I`m still doing- but CF is still a major part of it because a. I live with it every day and b. Mostly, because of the governments blaze approach towards anything to do with CF in Ireland - even though we have the highest instance of it in the world.

I`m just an ordinary person like anyone else, with a lot of different elements to my life. I have a massive love for music, a love of quirky fashion. I have a passion for informing people about cystic fibrosis, I think there are so many aspects of it that are unexplained and under explored for people emotionally and medically. I want to write about my experience with that. There are also at least a dozen other stories I`m going to write too, that have nothing to do with CF. I just love people and all our crazy intricacies. I also have a weird love for therapeutic cooking, shopping and hanging out by the sea. (Love the fresh air!)

If 300 people wrote about CF each book would be so different. So forgetting the CF, my book is just about life, growing up, dealing with friendship, challenges, the absolute drag it can be going through the teenage years- and all the unexpected moments, and fun that can happen too. I`ll be updating this every few days, so check in!