Randomness

I think I am overdue a proper update, so this might be quite a random post of events from the past couple of weeks.

Health wise, it all went a bit haywire again but I am now back on track! I had finished those last IVs after my trip to Arran I was feeling better at the time, although still very breathless. However within a couple of days, my temperature was flickering back up again and it was clear that something hadn't quite been dealt with during that course of antibiotics. I went into hospital for a few days and started on an IV antibiotic that I have previously had an allergic type reaction to. This time however I had some steroids with the antibiotic to suppress the reaction, and much to everyone's delight, have been managing fine with them. The best news is that this particular antibiotic kept coming out as the most effective one (in the lab anyway) for my bugs, so theoretically it should hit them pretty hard (that is real medical term, honest). I would say that, so far, this seems true as I am much less breathless than I have been for months and my exercise tolerance is definitely better. I am almost scared that by saying this I am going to jinx it, but hey, I'm sure you all wanted to hear that bit of cheery news.

My other exciting news is that I was speaking at Scottish Parliament yesterday. The Live Life then Give Life Campaign (founded by friends of mine, who have CF) were presenting on the topic of organ donation, with particular reference to issues within Scotland. I was asked to attend and speak on the subject of 'life on the list' in an effort to illustrate that organ donation is a topic affecting real people. I thought it all went very well and I managed to stand up and speak without sounding too nervous, dropping my notes or knocking over any equipment in the process, which is always a good start. It was nice to have the experience of attending such an event, and to have a 'wee shot' at public speaking - my own experience being fairly limited to power point presentations at work. The Daily Record were covering the story, so you may have read an article about me in todays paper. I didn't really want to do an interview, as I do find these things very difficult - largely due to the fear of how things will come across in print and the lack of control I have over that, not to mention the emotional strain of telling my story all over again. Instead, I gave them a copy of my speech and they used that for the article, so at suppose I can't argue that it wasn't my words. I hope it helps a little in raising awareness of the issues, and keeping the topic of organ donation high profile. I must say well done to my friends who organised the event, as so much work went on behind the scenes (most of which even I am unaware of). I just turned up on the day and smiled a lot, and I'm the one who's face was in the paper. Doesn't seem quite right, but the sympathy vote always wins over. That, and my natural good looks of course ;-)

For those Seb fans, I can give you some serious Seb naughtiness that has gone on in recent weeks. The piste de resistance was probably on Sunday when we were having a family dinner for Frances Ann's anniversary. Mum was busy in the kitchen, cooking and setting out the dining table. We were all lounging in the living room, being typically unhelpful and lazy. Seb was wandering about between the two rooms. So, I'm sitting in the chair and I notice Seb come bounding into the room, looking suspiciously cheerful. I notice he has something in his mouth, and as I try to identity what this large, pink stuff is hanging from his jaws, when I suddenly hear mum shreaking "Where's my prosciutto gone?!" "Where's your dads prosciutto gone?!" I then realise what the pink stuff is in Seb's mouth. Seb realises I have realised. Seb turns his back and quickly mashes all 7 slices that he has stolen from the dining room table into his mouth and attempts to swallow them whole, and succeeds. I go through and inspect the dining table. Everything appears untouched, apart from the 2 plates which now just have a some melon and a few untouched strawberries but no prosciutto. Seb follows us through and stands innocently looking at the table, pretending he has no idea what all the fuss is about and acts as if he is also deeply puzzled by the missing ham. Who could have stolen it? Not me! Clearly feeling invigorated by his successful thieving episode, he then dived through the living room and tried to help himself to a bread stick. I highly doubt he even likes bread sticks, but was obviously still riding the adrenaline high and it didn't really matter what it was he was stealing. This was followed by stealing mums cousin's sandal (she made the mistake of taking her foot out of it for a second), dads slipper and a milk carton from the recycling box. I think he needs an ASBO.

Today is Frances Ann's 3rd anniversary. The CF trust have a webpage called Stars in the Sky set up in memory of people with CF, where each star represents someone who has lost their life and contains a message about that person. On a chosen special day, the star twinkles brightly in their memory, so if you go here today, you will see Frances Ann's star is twinkling and you can read our message.

(if you are reading this after Sunday, you can still click on the star. If you switch on the grid, her star is in C2).

On days like this, I have a little card that Frances Ann once sent me, which I bring out and read. She sent it to me after a long and difficult hospital admission, where I had taken some time off work to be at the hospital with her. I thought I would share part of the message on that card:

"The little blue fish on this card is like you, because you're not like all the other sisters in the world - you're a million, trillion, zillion, gazillion times more special! Thanks for being my supersis. Love you so much there's no word."

Those words make me feel sad for what I have lost, but they also make me smile because of what I have - memories that are free from regret and free from the feeling of words unsaid. I imagine in life that is pretty rare.