Day #6

Day #3

I just want to say I really appreciate all of the responses I've had from various candidates. A few people commented that I had said only party leaders should visit yesterday - in the post below this. They're right, but I didn't mean it like that. I was just so exhausted and wanted to convey that. I'm grateful to all of the people who have showed interest. Because I am so tired I would like to try and limit it to one candidate per party, and obviously an Independent or two. Hoping that doesn't offend anyone but am just exhausted. The unit in Vincents is being built but it will take a year before it is complete and ready to open. A lot happens in a year for someone with CF. That issue and issues nation wide including the setting up of the National Transplant Authority and much more are very important for people with CF.

I just wanted to say thanks to everyone for their support.

Orla x

Day #2

Today was much more quiet, as it usually is on Sunday's. My Mom and my friend Q came to see me which was absolutely super. Mom brought wonderful macrobiotic quiche that she made. It was so delicious after salt and vinegar hula hoops for breakfast. Ahem. A mere slip in desperation.

I was up pretty early and  another girl with CF that I knew died this morning. I don't feel it's my business to say any more than that, but it was a very sad, sad day. There was also a really interesting discussion on when a death should be announced and who should announce it. People often find out about their dead friends on facebook, which can be terrible. The way social networking is changing the way we grieve is fascinating. I spent a lot of time thinking about that today. And trying to read, and craving a blue Slushie - neither of which happened.

I was also pretty exhausted because of the drugs and the noise, but this is definitely not the worst ward I have been in. Because I have been on the new IV's for over 48 hours now they are starting to affect me and really wore me out today. I bought The Observer and just kind of stared at it. IV's can turn my mind to mush and make it impossible to focus or concentrate. It drives me mad because it's like hitting the pause button on current affairs for two weeks. I can't absorb and forget so much - what a time for it! The lack of sleep just amplifies it to infinity.

Thankfully the large, grey sheets that were covering the entrance and exit to the corridor have been lifted. This means I no longer have to walk through two other wards to get 'out'. This is brilliant. I was afraid it would be one of those things that's meant to finish at a specific time, but drags on for weeks. It looks like it was just a paint job. I was actually holding my breath walking through them or trying to and keeping my hand over my face.

Two of the women in my room are actually great craic. The lady who yells at me is really lovely too and very very forgetful. God knows what she's experiencing when she hears me cough. Earlier she asked 'Where is that dog hiding?'. We had a nice walk along the corridor earlier while the nurse got her tea. It was actually the highlight of my day. She's not yelling so much tonight either. But someone else is snoring loudly. Hilarious!


I got a call from Eamon Gilmore's assistant today to say he would call tomorrow. I really appreciate that. I also got a communication from Mannix Flynn (Ind), Ciaran Cuffee(G) and Oisin O Halmahain(G) saying they would all love to visit. Since I am exhausted and have limited energy it would be great if only the leaders came in. But I'm not so sure that will happen. Wish we had a country where it did though. The offer is still open. They can just tweet me @orla_tinsley or call Vincents and ask to speak to me. I think all the women in this room deserve that respect.

By the way, the empty Azo wipes tub that I replaced on my first morning here is still beside the new one in the same bathroom. As in no one has coped that it's empty yet and thrown it out.
The nurses are really lovely on this ward though, and they are better than some other wards on their knowledge about CF.

X

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.

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.