Up The Farway Tree

Health and Horse Racing

Health wise, I'm not so good this week but I went up to the hospital yesterday and got kitted out with some IV antibiotics, so hopefully will be feeling in top form again soon. I had expected to need some IV's fairly soon anyway, but hadn't anticipated feeling quite so unwell quite so suddenly. It's funny how these things can just seemingly come from nowhere and catch you unaware. I also had a sleep study done last week, where I spent a night in hospital getting my overnight oxygen and carbon dioxide levels monitored. I had been experiencing some bad headaches on wakening in the morning, which can sometimes be due to a build up of carbon dioxide overnight, so it was best to get this checked out. The test basically involved some large clothes pegs clipped to my ears and a wire running from one peg to a monitor. Needless to say I didn't sleep very well. Fortunately however the carbon dioxide level was ok - a little higher than normal but not enough to cause the headaches (or any concern). The oxygen was lower than the last time it was recorded overnight, and it was decided that starting some overnight oxygen would be a reasonable step to take. Although in a way this signifies a deterioration in my health over the past months, I feel surprisingly ok about it all. Mostly because the purpose of the oxygen is to hopefully allow a more restful sleep (your body tends to wake itself up when you oxygen levels dip too low) and therefore can increase energy levels the following morning. At the moment my biggest struggle with getting to work, is the getting up and ready part, which I tend to do in slow motion due to feeling so physically tired. I am hoping this will be a little easier with the oxygen, although I appreciate that not everyone benefits in this way. I also appreciate that it is fairly unusual to have made it this far along the transplant route whilst avoiding overnight oxygen, so I really can't complain at all!

On the more positive news front, my mum and dad hosted a very successful horse race night in aid of the CF trust and the Butterfly trust (CF family support services). In one evening they managed to raise an impressive £2656.89. I include the 89 pence because myself and Corey painstakingly counted the money ourselves (please note that any error in this total is Corey's fault entirely). It was a good night, and I was especially pleased when my horse "Puff-a-Long" came from behind at the last second to win its race. However I think I could hear cries of "Fix Fix" when both Andrews horse, and his brothers horse went on to come first in their race also. Probably just a sign of good breeding....or something.

A small update on the CF awards front. I had a phone call from their PR agency this morning to tell me that they had sent out a press release regarding the awards, and a few people were interested in my story. Eeeeeek! In main, the Daily Mail were very keen to do an exclusive story (I think for their Sunday paper). I agreed that I would speak to the journalist, but that I really needed to know what angle they are taking with this story, and ideally would like to see a rough draft of the article before it is printed. I have had some cringe worthy experiences in the past when our family agreed to do some awareness raising articles at the request of the CF trust. One example was an article for a well known Sunday paper, where mum said something along the lines of "You have faith that treatments will improve, or a cure will be found". This was translated into "They pray together as a family every night that a cure will be found in time" printed under a large photo of the family. I was mortified going into school the next day, fearful that all my classmates now had this visual image of me kneeling with my family, our hands clasped in prayer saying a few rosaries before bedtime. Another article claimed that "Jacqueline plays basketball on a regular basis to keep herself fit". I was very interested to read this, as to my knowledge I did not play basket ball and I certainly hadn't mentioned basketball during the interview. I then realised they must have noticed the basket ball ring we had put on the side of the garage a few years earlier. Talk about making assumptions. Back in school again, I had to explain to my friends that no, I was not a secret basket ball player in my spare time and nor had I pretended to be one. Needless to say I stopped agreeing to do these articles after a while, and became very tired of the sensationalist angle they always have to take. However I do feel a certain obligation to raise some awareness of CF - in particular that it is no longer the childhood disease it once was. Most people with CF are now living well into adulthood, and more importantly, they are managing to lead a so called 'normal life'. If the article is going to be related to the awards (as opposed to a sob story approach) then I think it's a positive message for young people with CF, and their parents to read; the message that people with CF can go to university, can work, can get married, can be the proud owners of naughty little dogs like Seb, and essentially can live an enjoyable and fulfilling life.