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
Sunday, February 20, 2011
Subscribe to:
Post Comments (Atom)
Posts
This issue isn't about you, but you've managed to turn it into one, and discredited other CF sufferers and people in hospital generally in the process. Coming across like this with your "me" and "my" demands is very poor. First you use a locked down Twitter account to ask candidates to visit you and your situation, relying on the community to RT the message. Then when candidates respond you say you want only leaders. Independents and others don't count, clearly. Not important enough for you, huh? Me Feiner. Why didn't you run with Dunphy, O'Toole, McWilliams, and Co? And you accuse others of having no balls? We already know what commitments have been made for CF in St Vincents. Self-interested, single-issue candidates like yourself have wrecked the political system and here we are again, listening to one. Democracy Now, My Ass.....
ReplyDeleteYou're totally right, it's not about me. I'm just trying to use my experience to show the issues. There has been a commitment to Vincents but until 2012 people are still in life threatening situations. And apart from that, there are issues for people with CF all over the country. Like the need for the national transplant authority to be set up immediately. I cannot speak for anyone else, because that's not fair. You're right about the leader thing. I was pretty tired writing that, and was just trying to show how exhausted I am. The twitter thing I didn't know, because when I try to retweet privates it gives me an option and says something like 'this persons account is private do you still want to retweet'. Anyway, I hope that answers some of your questions. Also, if you read that post it says there are Independents coming in later today.
ReplyDelete