Monday, March 29, 2010

Emotional Rollercoaster

It has been one crazy week on an emotional roller coaster.

First I got my letter to go and see a consultant in London, had me jumping for joy (well if I could manage jumping). Then I had a discussion with the nurses that come 3 times a week and we agreed that it would be good at this stage to drop it to once a week and after a couple of weeks not have them out all (except for tube changes.) This left me feeling a little unnerved. I know its good as it means I am getting better and dont need them, I'm learning to cope with looking after myself now. But at the same time its scary because it means I am responsible for looking after myself and then there is the whole what do I do if things go wrong or I get ill.

It was my dads birthday on Monday so I saw my sister and family, which was nice but left me feeling a little drained. Then I found some of my family who I havnt spoken to for a long time on facebook. That was an odd feeling, seeing how much they had grown up and changed. Felt nervous talking to my mum about it but it seemed to go well.

Then I found out about the whole Cushings thing. Im still not sure how I feel about that. Its scary and the treatment options are scary, but I guess I just need more time to adjust and to speak to someone who knows a little bit more about it or about me.

Friday I went for a meal with my parents, which was nice, though I struggled to stay awake the whole time, I felt so drained. I was also filled with self destructive urges.

Then got plans sorted to add some new 'staff' to my volunteer team. This is a huge step as my little team is growing into something to be proud of. It is still int he making, but I have worked hard and gotten everything ready for them.

Saturday I heard about Eva dying. I spent a good few hours crying. She is such an inspiration and so brave till the end. I wish I had some of her class and style. She will always be remembered and has made such a difference to me and so many others.

And tomorrow I go to London to speak with this consultant and hope and pray that there is something they can do to help, to allow me to breathe fully and to talk once again. I would love to get rid of this trach, it is really starting to rub raw at the moment and is so sore.

I couldnt sleep last night.  Lot going round in my head. Mainly Eva and London. I curled up with my music on and watched the sun rise out of my window as tears slowly plopped off my chin. My head just does not seem to know if its coming or going lately. Even the whole london thing is marred. I mean yeah, it would be great to be breathing and talking, but then there is the whole ethical side and going back on the transplant list not to mention can I offered the traveling up and down for treatment. But I am trying not to dwell on that at the moment. Im still not getting my hopes up until I speak to them tomorrow and find out what they suggest.

I finally got to sleep around 8am this morning and I was going to have an early night, but as its already 12:20 I think that has gone out the window. oops. So up early tomorrow. Its going to be a long day.

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