One of the people I was referring to who I was on the ward with lost his battle to CF on Saturday night. He was a member of the CF community who use the message boards, and I had been in hospital once or twice with him. Sadly it is the same story; he waited, hoped and fought for a transplant which never came. I spoke to his mum quite a bit on the ward as when I saw her sitting in the corridor, all I could see in my head was my mum having to wait outside the room whilst they worked on me when I was so ill in the summer, so I just sat with her and we talked about anything and everything really. It is always very sad when we hear of a fellow pwcf’s passing, and I think particularly poignant at this time of year. It makes me all the more determined to enjoy and appreciate my Christmas.
What I omitted to mention in yesterday’s blog was the tremendous busyness that has been the last week. Someone (ahem - Emmie) came up with the bright idea of launching a Christmas Live Life Then Give Life campaign – a sort of mini-media hit revolving round the idea that this is the season of giving and goodwill, and linking that in with the gift of life. We are already working on quite a big project (all will be revealed…) but Em’s ideas are usually good ones and we like to keep busy, so true to form we stumbled forward enthusiastically without really stopping to think it all through.
We emailed various people we know who have been touched by transplantation and a whole host of them wrote back saying they would be more than happy to take part. We then came up with the bright idea (the majority of bright ideas associated with me are followed subsequently by the phrase “it seemed a good idea at the time) of learning to write press releases ourselves, as our Media Guru who usually does them for us is juggling about a million and one projects at present. So under her careful guidance, we attempted to sit down and write a press release for each person. Seemingly very simple; in reality, oh so not. Actually I don’t know why I am trying to make it sound as if I didn’t enjoy it because I did, I loved every minute (apart from the late at night minutes where I couldn’t get the wording to sound right and wanted to drown my laptop in the sink). We worked pretty hard on them, as these are not only important to us because of the awareness raising potential, but each individual story is about someone’s life, someone’s struggles and someone’s emotions therefore you have a responsibility to do each one justice. Excitingly every single volunteer had at least one result from their press release, be it a local paper, radio station, or TV. One of them even made the community presswire (a national newsfeed) and can be viewed here. We are overjoyed at this response, and of course very grateful to each and every volunteer, as without a "face" there is no story therefore no awareness (the family featured in the community presswire release won't even benefit directly from this which makes their effort all the more humbling).
I’m so glad I have this to keep myself busy with, as my lungs have been struggling a bit since I got home. I was feeling so much better when I escaped from hospital therefore dived back into life with a great deal of enthusiasm and energy which they were incensed by and are having an almighty strop this afternoon. It’s hard, very very hard, not to get despondent about this; I disappear off into hospital and somehow in a child-like naivety I still expect to come out better. However the team did say to me that this might not be an infection it might simply be my new “level” in which case I need to learn to manage it, rather than focus on improving it, and a hugely simplified way of managing things is doing less. Easier said than done when talking is the ultimate problem…I think I am quite lucky it is talking in a way, it creates a rather odd situation where at one end of the scale ultimately the most frustrating and difficult to comprehend thing to find labouring, but at the other those exact points create an amusement factor based on the irony of the whole situation which I think keeps me sane. Or insane depending on your view point. This is turning into incomprehensible waffle, I think I should stop. Now all I need to do is take that piece of advice and self-discipline and apply it to my every day talking habits…
The C Word
4 hours ago