Tuesday, 26 June 2012


Grrrrr so unwell at the moment! :( My chest was so good on holiday and the milli-second I step back into England I plummet back down :/ Can't stop coughing and it's knackering me out, was in bed all day Sunday and yesterday; also my appetite is getting worse :(

I let the hospital know that I wanted to go on the bed list, but as usual they made it hard and want me to go up there AGAIN to see the docs! Not even joking, in the last month I have been up there 7 times- that's about twice a week, surely they can just remember one of those 7 times to see that my chest is getting worse?! I think they think I'm made of money, and traveling to london and spending the whole day waiting around in a hospital is my idea of a good time :/ I must have spent about £100-£150 going up there this month with petrol, £3 an hour parking and the occasional drink/snack. So annoyed with them, it's just not what you need when you're feeling rough! grrrrrrrr

Thursday, 21 June 2012

Turkey 2012

It's been a while since I've last blogged, been busy sorting out and then being on my holiday wooooo :D Before the holiday, everything was a rush with the hospital and booking the oxygen for the airplane, didn't have time to come on here.

The holiday was AMAZING! Me, Alex, Emily and Billy went to Marmais, Turkey for 4 days; it was so hot- 54 degrees celsius! My chest was good out there too, the heat helps it and I cough so much less. Here's some pics of what we all got up to :) .......

Me on the airplane with the overly expensive oxygen!

Me and Al on the beach



Jeep Safari

View of Marmais

In the sea

Me and Em on the jeep safari

Me at the hotel by the pool

Me and Em on the boat trip

On the edge of the boat

Tuesday, 5 June 2012


A busy week has been and gone, and I'm happy to say I can breathe again lol! My IVs have started to finally kick in, early days yet but it's so exciting when I start to feel better, because I can plan things and start up my life again. I'm going to go visit some dog kennels within the next week to see if there is any work going, whether it's voluntary or paid.

I need to work on my weight though, as after I reached the heaviest weight I'd ever been (48kg/7.5stones), I've plummeted back down to 45.5kg :'( sooooooo frustrating! It was such hard work just dragging it up to 48kg and in such little time it's dropped so much. But that's just one of the joys of CF lol, and I'm sure that other people with CF can relate to the frustration I'm feeling!

I still have just under a week left of IVs so hoping to improve even more :) fingers crossed.

Last week, in preparation for my holiday, I went for a fitness-to-fly test. I requested it just a few weeks ago and luckily they had a cancellation so I was able to have the test quickly- usually it can take 3 months just to receive an appointment. During the test, you sit in a small glass box with ECG wires, a carbon dioxide wire and oxygen level probes attached to you. You can't feel anything from them except the carbon dioxide wire heats up a bit so a bit of your arm goes warm. Next, the lung function/doctor person switches on a machine that sucks out the oxygen, to recreate the air inside an airplane that is something like 4,000 feet in the air. On ground level, the amount of O2 in the air is around 21% and up in an airplane it's around 15%. The lung function/doctor person had to switch on the 'emergency O2' because my sats had dropped to 82% (the lowest it is safe to be is 85%) and he said I had started to hyperventilate and my heart rate raised. To be honest, I didn't notice a thing! I just felt a bit sleepy but I didn't feel breathless or anything. Just goes to show that your body can go into 'emergency mode' without your mind really knowing what's happening or panicking. Anyway, basically from that it showed that I'm going to need O2 on the plane- which annoyingly the airlines can charge you an extra £150 for your ticket because of this! Talk about discrimination- it's not our fault we can't breathe! :/


My lovely daddy designs board games with his older brother and best friend. A few admissions ago, I was bored out of my mind as usual and moaning about it. I really enjoy playing Scrabble, so my dad suggested I played Scrabble with myself during the days or play it on facebook against friends and family. I explained that it would be rubbish playing myself because it would just make me cheat and that I already play on facebook, but if the opponent isn't online at the same time, you can't have more than one go. So with this, he said he will try and think up a game for me to play in hospital.

A few weeks later, he came up with a game! Similar to Scrabble in the sense that you have tiles and make up words; but different to Scrabble in that you don't have to have a wide vocabulary or know long, complicated words. Therefore absolutely anyone can play and enjoy it! 

You have 4 tiles that you pick out of two bags- vowels and consonants (so long gone are those Scrabble days of 7 vowels!) Then in each turn, you only put down one tile- this may sound impossible to create words from but the tiles make up the words any ways (the name of the game is ANYWAYS). So you can read them normally, backwards, up, down, diagonally... ANYWAYS :D 

This may sound complicated, but here's a piccy of a little game I started with myself- yes, you can play it by yourself when you're bored in hospital :D This may make my bad explanation of the game a bit clearer...
If you can see, the words I have made are: rota, at, won, now, raw, war, toys, loop, pool, no

So thanks to my dad, I now have something I can do when I'm admitted to hospital, to take away the boredom :D If you know anyone who would benefit from this game or would like to have one yourself; whether it's for hospital, education or just fun, visit my dad's business website at http://www.ragnarbrothers.co.uk or ask me for details :)

Lovesss xxx