Day #1

I actually had a sleep last night, which I didn't expect. From my entrance onto the ward until around 1am one of my room mates was very unimpressed with my cough. She just kept saying 'shut up!' 'I'm trying to sleep" 'Shut up!'. It's a pretty normal response to encounter on a 6 bed ward, but when I realised the woman was not confused and SEEMED totally with it, it kind of upset me. I feel like a broken record. 'Sorry, but I have to cough. I can't help it'. This is a hospital lady! I don't waste anger because I know it's just ignorance and it's not her fault she doesn't understand, but it can just grate. I cough every 3 minutes or so when I'm sick. Every single time, including while I was going to sleep she said 'shut up' or moaned loudly. It's obviously not fair on her either. But it is seriously tough to listen to. I don't think I should have to apologise for something that is out of my control and if we had a proper health sytem, wouldn't be bothering her at all. The lady across from me today told me that she had seen me on the Late Late Show and then said she remembers that time I was meant to go on and I was too sick. She seemed to remember a lot which was v strange. Turns out she had two babies born with CF about 30 years ago. Neither of them survived. She chatted with me for a few minutes and it was tough to listen to her. She was lovely though, very nice and very supportive. But I'm just so exhausted.

I have so much stuff with me in here that it blocks up my entire corner. Most people with CF bring so much stuff with them to hospital. It's necesarry to stay sane. We mostly get dressed every day too. I haven't showered today yet because I hate using the showers in here and I can't unpack because there is not enough space like there is in single ensuite rooms downstairs My friend text me earlier and told me a woman with some easily transferable infection had just been removed from her room. No one told her, she just saw the curtains being taken down (which is what happens if there is dangerous infection in the room, they are cleaned) Afterwards I tweeted that I would like any candidate in the general election who had the guts to come and visit me here and discuss the situation with me. I want them to see the reality. And this ward is actually very good and the nurses are very nice. It is certainly not the worst ward I have ever been in. But any ward that is not a single en-suite cubicle is not good enough.

This morning I went to use the bathroom and there was no azo wipes in it. They are the wipes used to clean the residue off the toilet seat before using it. I walked out and took some from the counter, and told the nurse there was none so I was taking them. The other thing is that three times I've left the ward this morning to get some fresh air. There was a bad, strong smell of urine here for an hour or so this morning. Unfortnately to get down to ground floor and outside I have to walk through two other wards and take lift, or walk down 4 flights of stairs and walk through the ward the woman with MRSA was on. I checked and it says the contruction work will end tomorrow evening. That would really be great. Two days might not seem long, but infection risk is so significant to me. It could damage my life. I really hate this place.

The food is pretty gross too, but I managed to get some nice organic natural yougurt in the shop, along with The Irish Times. Sat there eating and reading for a while to avoid the heavy smells and dead air of the ward. I opened the window last night and one woman got upset about it. The air is so heavy here, like it's humid. My cousin is bringing me in some real food later. SO.EXCITED. It's really hard because I have to eat lots all the time especially when I'm unwell or in hosptial. When I'm sick my body burns calorie faster, I lose fat through malabsorbtion and diabetes. I also lose muscle mass.

I really hope a politician comes in to talk to me. I'd really respect any who had the guts to, but so far - nothing.

First Night in Hospital

I finally got a bed in hospital today. It was a relief as it was Day Three of waiting. I called at 12 and they said there was possibly one and checked again to see if I had VHI. This meant I could go to one of the two semi private wards, which are ok but still have a mixed bag of residents. They are generally much cleaner though. Unfortunately when I called back at 4pm (because they didn't call me back to let me know the outcome like they said) the person had not gone home. I went to Superquinn to forage for dinner resigned to the idea that I wouldn't get one until Monday, unless I went to A and E. I'd been in worse situations than this, so I knew I didn't need desperately to go to A and E. Because of the dangers of cross infection I try and avoid it unless I am in severe pain/have bad bleeding or whatever. A blog I follow www.runsickboyrun is an amazing site by a 31 year old guy with CF in the US. He waited at home for a bed, but then got straight into a cubicle. He posted a picture on his facebook page. I saw it on the second day of waiting for mine and just felt so sad and frustrated. It's now 2011 and I actually frequently say to people "The Unit will be built next year!" It is so exciting to me. And then I think, what if something happens in that time? And then I shake that thought.  I've met the guys involved in building, they were lovely. There is real passion behind the project. As I sit here in a 6 bed room on a neurological ward that does not specialize in CF or anything respiratory, with five elderly ladies, I think of that.

I have a good stock of DVD's (entire boxset of The Wire to watch again) Unfortunately my face cleanser  opened in my bag on the way here (bags literally carrying weights dragged in by my amazing boyfriend!) My corner smells of Nelson's 'Pure and Clear'. It's better than nappies..

I've been here since 8pm and now at 11pm I'm still waiting for the INTERN to admit me. (Le sigh. Interns drive me mad) I've missed my 10pm IV dose, nebulisers and tablets. I'm pretty tired, so it's going to be a nightmare when the intern eventually arrives because I'll get more drousy with drugs but need to stay awake to do physio. Going to watch 'The Joneses' now to stay wide eyed. Not really looking forward to the weekend, they're always the time of week when you can see the tumbleweed wheel through the hospital corridor. You'd think weekends would be buzzing, but not many people visit. The week days are better because there is an actual medication and physio routine, which makes it all a little bit  easier.

x

P.S. Also my WARD is usually accessed on it's own corridor but because of some construction work going on the normal route is boarded up, so I have to WALK THROUGH TWO OTHER WARDS to get to it. That's completely crazy and so dangerous!! I'm really upset about it, but at the same time extremely grateful to have a bed. And I'm grateful to have a wonderful life apart from everything. I'm so lucky.

Waiting

I've been waiting for a bed in Vincents since yesterday. It's not a long time considering the usual wait time, so it's ok. But it is frustrating. I did home iv's for three weeks at home, meaning I spent an hour and a bit a day infusing two different drugs into my system every eight hours as well as my normal nebulisers etc. It was working great, even though it was so exhausting. Last Monday on my weekly check up to the hospital my lung function was nearly back up to baseline. That evening my sinuses started acting up again and post-nasal drip came out of no where. Because of some other physical deformity in my sinuses I can't use most sinus sprays because they could infect my brain. (Problem child est moi!) So there was little I could do but nasal rinses and lots of physio. The post-nasal drip reinvigorates the bacteria in the lungs and literally gives it a fresh army. At my appointment on Wednesday my lung function had dropped 30%, to a number lower than when I originally started IV's. So disappointing. It's literally as if I've been popping smarties and infusing water into my veins for the past three weeks. It's frustrating. I also couldn't run because of my foot, and even though I used the cross trainer, did weights, core and cycled a lot it's not the same as running. The pounding involved in running really shakes up the lungs and moves that mucus out.

So here I am waiting for a bed again. I'll probably get a 6 bed and spend the first week and a half  konked out on new drugs while trying to keep an eye on everything going on around me. I've been mentally trying to prepare myself for it since I found out. That place is so soul destroying.
I was really looking forward to being better and running the Connemara Half Marathon in April. I really needed end of Feb and all of March to train properly for it. I'm not giving up on it yet, but we'll see. I can't afford to be foolish about it.

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!