mixed lot

I have calmed down a bit now, and feel much better for letting off some steam. The comments I recieved were lovely (its nice to see new people reading too!) I can't tell you how much it means to know people (most of whom I've never met) are out there willing me on and offering support. Thank you, it means an awful lot.
This week has been a bit of a mixed bag. On Tuesday, we had a bit of a problem as my dad was having some health worries. My mum took him down to A & E, who have made some temporary measures but he will now need some investigations to find out exactly whats going on. My dad is never ill, and I know my mum is really worried about him. It must be so difficult for her to watch 2 people she loves being ill at the moment and not being able to do very much to help. She is the most amazing lady, and I know she will cope with this added worry but I wish she didnt have too.

Sadly the cf community has taken more blows this week. A 12year old little girl called Rebbeca and a 23 year old lady called Sarah lost their battles with CF. We weren't close although I had some contact with both girls, Sarah especially, but it is a terrible shock that these two young, beautiful people were taken by this cruel illness. My thoughts are with their families and friends who must be absolutely devastated.

On the other side of the coin, their have been good points however small. I have read some good blog entries about people who got their transplants and are doing very well. I have let the CF trust know that I would like to help where possible with awareness raising, and I got 75% on my last essay which has given me a boost on a course I was very tired of.

Before I go to bed each night I try to think of at least 3 positives about my day. They may be big things or very small and I dont know how much good it will do but lets face it, it can't hurt. It reminds me of a little phrase i read once " when you are tired and you cannot sleep, try counting your blessings before you count sheep". I've always liked it.

I'm at the hospital on Friday for my whole day of tests. I absolutely hate the thought of this, and I wont lie, am scared silly! Its not that I even expect anything to be wrong its just the chance they could find more problems that frightens me. I know my health is bad now, why else would I be on the transplant list? But I hate seeing the low lung function figures, rubbish x-rays and hearing the same information repeated again. It doesn't get any easier to hear. I also have a major needle phobia that although controlled now, still makes me terrified of having bloods etc done. Any thoughts, prayers, good/positive thoughts would be VERY much appreciated.
I'll let you know how it goes. x

Vent

When I decided to start writing this blog, I had 3 main reasons for doing it. 1) To document the struggles and triumphs pre-transplant so that I would never forget the journey 2) to raise peoples awareness of CF and organ donation, and 3) To help me get through the hardest time in my life by having an oulet for my feelings.
Writing my blog does soothe me sometimes and makes me feel as though I can get out some of the feelings that seem so huge inside me its a wonder they fit. I find it hard to be honest with people a lot of the time as to how I'm feeling and try to put a gloss on what i say. Not always, but sometimes.
Every now and again I feel like I'm having real trouble coping, and there are days where I just feel overwealmed by emotion. There are no reasons for it, it just happens.
I wish that phone would ring with the call that will turn my world around, sometimes I wish so hard it feels like I might burst with longing. It feels as though I am in a bubble and distanced from other people, my life is on hold while others rush around me doing normal everyday things unaware of how my life is so different to theirs. If they knew they wouldn't take anything for granted, but I don't begrudge them, how could they know how this feels.
I think of those who lost the fight and how their lives were so similar to mine. I look at old emails or texts and feel like crying inside at the hope they had for a future that never came. I want to live life to the full in their honour but its very hard when your world is getting smaller. Still I realise how lucky I am to still be alive, not in hospital and with my family, then I'm ashamed at my complaining.
There are (frequent) times when I realise how much I have gained from my illness and my current situation. I have a respect for life and I do believe I'm stronger for the bad times. I can't say I wouldn't change things if I had the chance but I dont regret anything. I've faced things I never thought I would overcome, but I have.

I don't want anyones pity which is why I use the glossing technique,but sometimes I need to vent so I don't explode. Thanks for listening to my vent.

xxx

awareness raising and cocktails!

Hello!

Not much been happening this week. My feet have finally touched the floor after the awards, thank you for everyones lovely comments.

I have been in the local press a lot lately! I was approached by 3 papers before the awards and then another 3 articles were written afterwards, I'm really not that interesting to be honest! You can view one of the articles herehttp://www.thisistotalessex.co.uk/displayNode.jsp?nodeId=170532&command=displayContent&sourceNode=170515&contentPK=20674730&moduleName=InternalSearch&formname=sidebarsearch.

I really enjoy doing publicity work though because it is so good to raise awareness of CF and organ donation which is obviously very important. At the awards there were a couple of ladies who do awareness talks etc for the CF trust which is something im very interested in doing myself, it definately appeals and would let me feel I am doing something to help myself and others in my position.

Unfortunately another life was lost to CF yesterday. I only knew the lady via the forum and hadn't really had much contact with her but it still hits you hard to hear of another loss. It is so sad that her death was needless in a sense but for lack of organ donors. This is the very reason awareness needs to be raised.

I had a slight blip last week when I started being sick repeatedly and had a temperature of 38! To say i got pretty worried was an understatement but thankfully it was the only temperature i seem to have had and it appears to have been a 24 hour bug thats going round. I had quite nasty chest pains afterwards which scared me witless but we are putting that down to straining the muscles when i was being so sick. Again, thankfully this has stopped now but it made me realise how lucky I am to have stayed so well.

Last night I went to TGI fridays with my friend Lindsay. I love TGI and it did not disappoint. I had jack daniels chicken and a sunset boulevard cocktail whic were both gorgeous! Yum yum! I also had some of Lindsays chips because I was still hungry when I finished my own (which is unheard of!) so thanks hun!

Stay smiley! x