Thank you to everyone who sent good wishes and positive thoughts my way for my hospital visits, they were much appreciated.
Last Friday was CF clinic at the Brompton. I was very worried particularly about the journey as me and my mum have to struggle on public transport. When I woke up I unusually felt really upbeat (result of positive vibes?) and decided to try and maintain this by putting on some feel good music while I was geting ready.
I managed the journey ok even though it was quite busy and when I got to clinic there was a long wait. It was all worth it though as everyone was so friendly,my weight and breathing were up, only very slightly but up is up! The team were really pleased I was doing well at the moment and that my last IV's were december 2006 (which I thank my lucky stars for every day). I came home on a high as its been so long since I had a decent clinic visit.

Yesterday was Harefields turn. It takes 2 hours to drive there so we had to leave by 8.30. It was my first visit to pre transplant clinic and I was nervous. I needed bloods,ECG, x-ray,and lung function completed before clinic in the afternoon. I got blood done first thing as I was so nervous about it and sat in the waiting room practising my hypnotherapy techniques to calm me down. When I got in the room I had about 15 phials taken which I was rather less than impressed with, it took have two attempts to get all the blood needed and now have a big bruise on my hand.
I hadn't eaten much that morning so afterwards felt very woozy with all the blood I'd given. I found it fairly tough especially with the stress of being there, the long waits and exertion of lung funtion. When we finally left the hospital at gone 4.30 I was well and truly shattered.
Not much to report but a very god thing is that its now in my notes that i'm needlephobic so regarding the operation they will do majority of invasive things while i'm actually out of it, which is a huge relief!
I'm feeling better now but will take it very easy today and friday.
Next appointment at Harefield is in 6 months, but fingers crossed it will be before then for new lungs!
xxx

My brain is less frazzled now so thats good. Whats not so good is that I been feeling a bit low the last couple of days. Its not all the time, but at some point during the day ive been feeling down.

I find writing on this blog helps me to deal with things, so thought blogging may help me get it out of my system. Don't get me wrong, I know I'm a lucky girl. I have some great people around me, lots of things to keep me busy at home, I've keep quite well this last year and for these things and more I am very thankful.

I was reading some course stuff a few days ago but couldn't really concentrate. I felt frustrated but didn't know why. I abandoned reading and tried to make some sense of my feelings. I felt like I wanted to go out somewhere but that didn't make much sense as I'd been out over the weekend like I do every week,it was more than that but I couldn't put my finger on it. Then it suddenly occured to me, like a bubble popping in my head, I wanted to go out by myself.

This may seem a bit strange but when i thought about it I was shocked to find its been over a year since I have been out, going somewhere completely by myself. I'm not really an alone sort of person, but the memory that filled my head was a drama course I went to in London a few years ago. I had to comute to London once a week and used to really enjoy the freedom of doing exactly what I wanted with no imput from anyone else. I used to arrive early and check out the shops on Liverpool st station, buy some lunch and a magazine for the journey homedecide which train to catch etc.

I miss that feeling of independence.

Since being on oxygen I haven't felt confident enough to be out on my own. I worry I'll struggle or my oxygen will fail (as it has before). I'm always accompanied by my mum, dad, friend, sister,etc.

I would also love to go away for a break. Going somewhere for a weekend is so much hassle that its not really feasible but I think it would do me the world of good right now.

Its the ability to be independent, to go out when I want, where I want, without worrying about transport or how far or number of steps to cover. To go and buy presents for mothers day, hopping on the bus to the shops rather than being pushed in my wheelchair trying to manouver tight spaces, or describing in detail to someone what I want to buy and relying on them to take time out of their own busy lives for jobs I should be doing. Its wanting to break free of the chains I feel are holding me at the moment.

It all comes back to that saying I suppose, "You don't know what you've got till its gone"

xxx
Ps Any good vibes you could send my way for friday and next wednesday, would be most appreciated. I'm at Brompton and Harefield clinics. Thank you x

First of all, thanks for the lovely comments on my last post. You're all such brilliant people, you really made me smile!


Things have been same as usual here. I've written the first essay of my new course and am waiting for my result to come back at the moment. I must admit I am not keen on the new course. The way its written is very "wordy" and they seem to use 60 words to say what they could with 10!! It makes it very hard to concentrate and I end up going back over eveything to get it sinking in. Its hard to keep track of what I should be doing, reading or writing and keeping ideas from both courses separate.

My brain seems to be on strike at the minute. I finding it difficult to settle to anything, and feel quite frustrated as a result. I'm quite a creative person and think its important for me to have projects to be able to relax with inbetween study. The trouble is with the way I'm feeling I just flit between ideas without actually coming to any decision which only serves to annoy me further! I have so many ideas but either, a) get caught by several ideas but fail to fix on one or b) get quite behind a particular idea,buy the materials and then go off of it and have wasted my money!

I am quite into reading playscripts, this is good because it is something drama related and a good distraction from childhood studies!!! I've read American Beauty which I devoured and absolutely adored, and quality street which i enjoyed. The only thing is, its quite hard to pick which plays to buy and they are quite expensive. I mean, do you pick something famous? a film/play you've previously seen? something by a well known author? How do I choose?
Plus I mistakenly looked on a drama school website at their MA courses and the audition process involved and completely freaked myself out! There is so much competition for places and you need 3 plays from certain periods of time, its scary. In fact I had to calm myself down after by taking a reality check that I'm in no state to take a MA now (healthwise and no degree yet!) and therefore have plenty of time to sort this out!
I really need advice from someone whos been to drama school and experienced it i suppose.

I also have numerous craft ideas but again, its hard to focus my energy. Do you know what else? I have the desire to clear out my entire house as well! Have a good chuck out and declutter. Its very odd, a bit like nesting without the being pregnant!

I think lists my be the way forward (I'm a list type of girl), i need to get organised.
Lets hope my brain gets less frazzled soon! (Any suggestions appreciated! :)
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Ok just to warn you all, this may turn into a rather long, deep post,so don't say I didn't warn you!

Last night I had a dream. I always find it odd that in the vast majority of my dreams I don't wear oxygen and have no trouble moving around etc, this dream was no exception.

I appear to have been in a house that was unfamiliar and i remember a girl about my age who i was friends with (again no one i recognised) she and i were talking about me wanting to be an actress. The next part of the dream seemed to be that she had arranged some kind of audition with a casting agent but thats where it got confusing! He didn't use the conventional method of audition but instead used other actors in character, who would come in and ask questions during a short improvisation as a sort of test of skills. Anyway, I hate improvisation in real life, but in this dream I was throw in to it and surprised myself by coming out with clever,quick answers. I remember them being quite impressed with me and I was completely basking in the enjoyment of acting without nerves,or constraints and doing well at it.

The only flaw was when I woke up. I found myself in bed, wearing oxygen, waiting for a transplant to replace my battered up lungs just as I had gone to bed the previous night. The soaring happy feeling of my sleep was instantly gone. It was replaced with disappointment,sadness and annoyance. I'm not saying this to get anyones sympathy, but like i've said before this blog has to truthful or else there is no point writing it.
Thankfully I only felt down for about half an hour, but it started me thinking. Its about two years since i really began to feel the decline in my health, and over a year since i started using oxygen. I feel quite restricted most of the time with what I can manage to do and having to plan journeys,oxygen supplies etc but after this amount of time I have become somehow accustomed to it. The wonderful feeling of freedom and being able to do drama related stuff, something thats been on the back burner for a while now was amazing and liberating. Then it hit me, this is how life could be after transplant.
I do believe that everything in life is for a reason, and although somedays it is VERY hard to see any good points in my situation, they are there. I honestly believe that all that I've been through has made me stronger, the same for my family. If you had shown me some of the hard things I would have to cope with and go through I would never have believed could do it, but I did. Its all part of the bigger picure and ongoing journey.
Life post transplant is going to be all the sweeter because of the restrictions placed upon me now and the hard road it takes to get there. xxxx