Look what I have just stumbled on.

I knew Eva had painted a few other people, but up until today I hadnt seen the results. 

Eva you were one amazing person, look at you still changing the world so much when it has been a while since you were in it. If only you could have carried on, its hard to imagine the places you might have been by now.

The picture is being used as part of the Canadian organ donor campaign Live Life, pass it on.

As for me, well im still in and im still on IVs. Do I feel any differnt? nope.
However, the last doc must have gotten a good vein, as my last cannula, is the first one I have had in the past 3 years that has lasted the maximum allowance of 72 hours. Fab news. However it has meant that it has had to be resited again today. 2 doctors, 7 stabs and I know have a new cannula in my little finger. I doubt this one will make it 72 hours, but maybe I will be out by then.

Though I was asked when i had to leave for London and told they will discharge me at the latest of lunch time Sunday. Fun huh? I intend on being out before then. Just waiting on stupid culture results.

Though I think the meds are finally building up in my system. I feel nauseous today.

But what is worse, is that I have stopped sleeping. Yeah very odd for me. And I cant work out why. I have tried taking my meds earlier. Tried winding down, wearing out and not napping. But alas I am still wide awake at 5. I eventually drift off and get woken for IVs or because I have to go the gym.

i dont know if my mind is going into dread perhaps. The last 4 or so nights, I have had the most awful dreams. Very vivid, very scary and very messed up, involving lots of dead people, killing and running. I wake up several times, even get up and move about hoping not to fall back into it, but I keep doing so anyway. Hurry up and change the damn IVs please.

As for Physio, I was assessed today. I am at pretty much the same point that I was at when I was discharged with my trach. I dont know how I feel about that. I have worked to build up my fitness and I have lost 20kgs, putting me out of the obese catagory and just into overweight. So that should help. But the restriction and hospital time is still taking its toll. But, at least I am not any worse.

Reflecting

I feel like, lately I always come here to moan. Thats really not how it is, its not so much that I am moaning, more reflecting, sometimes its sad and sometimes its not. But overall, I think I am dealing with things ok, all things considered. Though, if anyone who reads ever feels like I am being moany, please do tell me. Sometimes its good to her what others thing.

Last night, I was in a very happy, for no real reason. I enjoyed it. I was tired in the evening and planned to spend the night doing nothing in particular on the net. Instead, I looked up a pattern that I had been wanting to try since Christmas. It was not a very difficult thing, but it challenged me logically and manually. Figuring how to get the pieces together and how to get the right edges. But I did it after a few attempts (its nearly finished, just need to get something from the shop to finish it) I felt good afterwards. I learnt something new and I came away with something nice. I showed my mum and dad and they were both impressed. For weeks I had been down about things I cant do, but this is something that I can.

I have been doing a lot of thinking as well. I always say that I wanted to write this blog in hopes of finding people with the condition that I have so I can relate to them. And it has worked to a point. In the last year, I have spoken to a fair few people, through here, through a yahoo group, through a facebook group and few a few other journal sites. Whilst is has been a learning curve and something that I think helped, I am beginning to  think that perhaps deep down finding someone with the same condition, was not what I wanted/needed.

No, what would have been better would perhaps have been something like, finding someone with similar coping stragies as me, someone who perhaps deals with things in the same way. I dont want to blow my own horn so to speak, but of course bad news gets me down. My method for dealing with it, is that I usually get sad/mad for a couple of days and then I accept it and get on with it. I may disagree on part, I may look for alternatives, but I find the best way to go with it.

The person, in the last year or so who has left the biggest impression on me was Eva. I related a hell of a lot to stuff that she said and her whole attitude towards things. She was such an amazing person. I aspire to be like her.

The quiet acceptance, the compliance where need be, making the most of what you can and being thankful for anything anybody tries even if it dosnt for example work. I know this is not an easy attitude to have and I wouldnt expect most people to do it. But I think I need to find some role models and other people working the same way. I need to once again relate to people.

There are people at the other end of the scale and I dont blame them and I am cautious to what I am saying as I met a few of them through blogger, so it wold not surprise me if they were to read this. I dont mean it as offensive, just different.

Sometimes, it feels like, people kind of demand to be fixed, by the person of their choosing. Kind of 'I'm sick, fix me how i say, where I say, when I say.' I know that not everything can be fixed and I am eternally grateful for everyone who tries to instead improve things for me, even if they dont work. There is often a chance that I wont come away any better off, to which I say its worth a try. There is also a chance that I will become worse off, to which point, I weigh up the consequences and it becomes my discsion to take the risk or not. I would never bad mouth someone for the result.

I dont know, I guess I am contemplating thing a lot, my attitude, other attitudes. Good guy finishes last and all that shizz. But I am begining to ramble. I also have news in the land of tracheal transplants and such, but right now, I dont feel upto posting about it as I havnt figured out how I feel about it yet, so perhaps tomorrow.

Getting their monkey

So on the positive, I am feeling a little better today. I awoke about 10:30 (which is early for me) and I have not napped through the day. I dont know where half the day has gone if I am honest. Did some washing ready for my hols, but had hoped to have my bag packed by now (oh well) instead I have a huge big pile on my bed of things I want to take. (But I might rant some more about that tomorrow. lucky readers huh)

Im still chocking off and on, but generally Im coughing more muck up which has got to be a good start and my temp has stayed stable all day.

I did have a coughing fit before (I have had a fair few today, but this one sticks in my mind.) My dad was napping in the chair in the corner. I started coughing and spluttering and mum knocks me on the arm, gives me a glare to kill, and tells me to shut up as dad is sleeping. Well excuse me for breathing! As horrible as it sounds I hope one day she ends up needing a trachy for some reasons just so she can see what it is like. Its not like normal coughing, you cant shut your mouth and make it quiet, you cant do little coughs as it will just block up the tube and you cant hold it in as it restricts your intake.

I do hate having a trach, but I have had to adjust to it. However, I think mum hasnt yet. Which is kind of annoying. oh unless, we are out and someone mentions something and then she is all 'oww poor her blah blah' as she like the attention, which annoys the hell out of me, as I dont tell people things (I still have the whole I want to be treated normal thing going on) *sigh*




Anyway, this evening, I went with a friend to see Dear John. It was sad in places, predictable in others. The bit that got me the most, wasnt even a sad bit. The song Paperweights by Joshua Radient was playing in the background a couple of times and all I could see was Eva's smiling face from the video she made with the same song on. Its nice to be able to think back and reflect on her being happy, kinda gives you hope you know. I do miss her, but she will always live on through the people who remember her and those whose lives she touched.



Oh and i had another cough/chocking fit, while I was paying in the cinemas, which wasnt fun. I was using my disabled card, so I kinda had to be present as they need to check I match the pic and such. So I just kinda had to turn my back on everyone and face the corner, while making some odd noises.

I am nervous as hell for tomorrow. The nurses are coming out to the house to change my trach tube. This will be the first time it has been changed outside of hospital. Im nervous incase there are any problems with it going wrong and such. But I should trust the nurses, that it is going to be fine. (I hope)

On that note, I should get some sleep as I have a lot to do tomorrow.

(Oh and someone commented on a lot of my entries today, but I cant seem to click into their profile, so sorry if it seems like I am being rude or anything, I dont mean to)

Every time is adventure time!

Today was a bank holiday, which meant a long weekend. (woo) Not that it makes a huge difference to me but my mum had an extra day off work and yeah.


Friday night, I didnt end up going to bed till about 2:30 am (yeah I know that isnt exactly late for me, but I do try to go earlier on a Friday as I have to get up to help mum on a Saturday morning.) But it was Eva's memorial and it was being live streamed from Canada.


It will be availble soon to watch (well you can watch it now, but its not good quality) but I felt the need to watch it live and I am so glad that I did. First off, hearing how Eva grew up, how her spirit has always shone through even when at her sickest, listening to her friends best memories of her, learning how much her family treasured her. She really did live a wonderful and full life.


But more than that, with the live stream, there was also a live chat. I was able to talk to people who went to school with Eva as well as others whose lives she had touched. It was nice. Her legacy truly will live on.


So I have decided to stop being a wimp and so I am going to upload the video I filmed at easter as a record of my voice. The quality is kinda crap as I had to turn my mic volume up full and I was only using the one installed on the computer, so you can hear all the computer workings too. Maybe at some point, I will dig out my old mic and redo it.





So yeah. I know I have a horrible accent, but that is my voice at the moment, sounds kinda like a whisper. I am fine around friends, but often if out, strangers ask why I am whispering. blah. Also, its harder to talk than normal talking as I literally have to force air out of my throat. If I talk too much (which isnt a lot really) I tend to get bad headaches, I can only assume these are from lack of oxygen or something. I tend to take painkillers for them which numbs it a bit, but sleep is the best cure =]


There has also been another change. A more visible one if you like.
I have changed hair color. I would post pictures, but I am not that happy with the pics I have at the minute and I want to put a few pics in from a while back, so maybe I will do that tomorrow.


So I have been shopping and got a few new top for my hols and I am also in the process of moving my 'entertainment system' around. I usually have my wii plugged in under my tv and my cable and dbox under my tv put not plugged in. The reason for that is that my tv is in my wardrobe type thing on the wall. The wii fits on the shelf underneath, but the cable and that just about fit, but once you put the wires in, the doors wont move past it. Well today I managed to get a long extension lead so I am in the process of moving everything to the other side of my wardrobe where there is more room. (though the wires will look a bit more messy) it should prevent me having to plug everything in all the time and I think the remotes should still work from my bed (bonus!.) I am part way through doing it, but I have had a few issues, my dbox currently wont pick up any signals, I should have checked it really, but it was working last time I used it (maybe a month ago) and its rare that all the channels go at once, so I will have to have a better look tomorrow, no doubt I have wired something in wrong.


A dbox, by the way, is a german satellite receiver that runs on the cable (now virgin) tv system. You usually have to program it yourself, but you get more channels than you would on cable alone. (shh)
Once that is working I will need a longer scart, then to decide if I want to plug my dvd player in or just stick to running dvds through the wii. hmm. I've run out of scarts though, but maybe if I can get a long scart to phono It would be worth plugging in also. (hehe no wonder dad shouts at the electricity bill)


I might post pics once I am done.


Anyway enough rambling.