Monday, April 30, 2012

CF Awareness week

So it's CF awareness week, so each day (hopefully), I am going to blog a post with something CF awareness related. The first of these posts belongs to the Oli and Nush youtube video. A great starting point for sharing what CF is all about!

Monday, April 23, 2012


So first of I have to say- if you get the chance to see 'Singing in the rain' at the theatre then you should go! It was amazing. I didn't know the story line of the show before I went as I had never seen the film, just knew its most famous song! I thoroughly enjoyed my afternoon there with my mum. The coach trip either side of getting to London was abit long, with a very aggressive driver but the show was good!

I was at clinic on thursday and somehow came away with no antibiotics what so ever even though my lung function is 20% below baseline. Go figure that one out if you can, I said I didn't feel ill enough to need IVs but was prepared to have orals but then the doctor said to not bother with anything unless the sputum sample comes back growing something other than the pseudo I always grow! I also came to an agreement with my diabetic nurse that I would spend the first week of every month doing lots of blood glucose testing (that means at least 4 times a day) and then the rest of the month I can just test as much or as little as I like. The blood testing bit of the diabetes I really struggle with because I live alone and dont like the fact that my food is sitting on its plate and then I have to test before I can eat it. If I am eating somewhere else testing is easier as your not cooking and serving your meal up so you have more time! I will also be doing a week long food and insulin diary to see if my insulin ratios are correct for the carbs I eat and if my carb counting is accurate!

This weekend was St George's Day parade for scouting. It was the worst parade I have ever been on! About 5 minutes before we were due to set off the heavens opened up and it didn't stop the whole time we were walking to church!! I was completely soaked, my trousers were wet all the way upto my bum and despite wearing a waterproof coat my shirt underneath was also very damp! None of the kids really complained about how wet they were but boy was it wet!! In the church we were sat near the radiator/radiator pipes that ran along the wall and I sat/stood against the pipes through the whole service to try and dry myself out abit. As when I got into church and stopped moving I went very cold and felt very ill!! So by the time we left the service I had gone from soaking wet to mildly damp. The rain had stopped by the time we left but then it was just windy and I don't think that was much better to be honest as we all just got very cold walking back because we were wet! Alot of credit must go to all the young people who turned up-the church was still full (and its a big church!) inspite of the weather. I know my beavers will be getting an extra awesome reward for turning up and not complaining. When I finally got home and took my boots off, my socks were soaked through and my toes had started to go wrinkly as if I had been in the bath! I spent the evening feeling very cold despite the heating being on at 20degrees, my warmest fleecey pjs and a dressing gown on! I also spent most of the evening sneezing. I went to bed feeling decidedly unwell and just hoping that a good nights sleep would make me feel better. The good news is this morning I dont feel as bad but feeling abit chesty so will have to see how things develop.

The plus side to my weekend was that I got to spend saturday afternoon/night and sunday morning with my bf, which was a definite bonus in th emiddle of st george's parade practice and parade!

Tonight I start my sign language course, which I am looking forward too and will no doubt blog about soon. However I am currently awaiting the delivery of my TOBI nebuliser drug (it is too expensive and GPs in my area refuse to pay for it, so the hospital have managed to sign a contract with a company who will deliver it to the patients instead, meaning the cost of it is coming from the hospital budget). By expensive I mean it costs £1187 a month to be on this drug!

Sunday, April 15, 2012

Almost a third of the way through the year......

..........and what a year it has been so far!!

We are only in April and already so much has happened this year that I would never of guessed at or anticipated if I was asked at the start of the year.

Some of it is good, some of it is bad but I guess I can say it hasn't been boring.

2012 has so far seen the loss of someone who I thought was a very good friend all because of a difference of opinion, I thought our friendship was stronger but it seems they did not want to fight for it and just wanted to let it go, the sad loss of a 10yr old cub after a very quick fight against cancer (just 6weeks). However positively 2012 has also seen the birth of my beautiful god-daughter, the start of a new relationship which I feel very positive and happy about.

I have been to see 2 shows at the theatre already and have 2 more lined up for definite.

There are also trips to York, Cadburys World, Wales and Gilwell all promised for the next third of the year alone!

Heres hoping the next 4 months of 2012 bring more positive and happiness than negativity and sadness for all.

Wednesday, April 11, 2012

Catch-up time!

So- what have I done since the last time I blogged I can hear you all asking! Well here is a little run down!!

I went to see Sister Act in Nottingham (which was amazing) with my mum. We have discovered that because I am on DLA, we qualify for 'carers' priced tickets at nottingham theatre. Which effectively gets us in at half price each, which means shows become a lot more affordable! The great thing is, they dont specify who your carer has to be, so if  I want to go to the theatre with a friend I will still qualify for this bargain pricing system. I have said it before and I will say it again- there has to be some benefits to having CF and this is one of them! It allows me to enjoy one of my few pleasures in life without worrying about the bills.

I went on a date and the end of March and now have a boyfriend! It has been about a year and a half since my last relationship and I am currently very happy with the way things are going between us!

I spent the last weekend of March helping to sort out Gangshow costumes as they moved from their old storage unit to a new one. This was a surprisingly fun day, but also hard work and very dusty work!! Which my chest didnt appreciate that much but still never mind.

I spent easter weekend with my family. We did various things such as taking my nephews and nieces to fun farm (a big soft indoor play area in my town) and an easter egg trail round a local national trust place. It was good to see them all together, as it doesnt happen very often.

Thats about it really! I dont have any plans for this weekend but next week is pretty busy as the holidays are over. I will be back to doing all my usual term time activities (beavers, volunteering in a school) and on top of that I am going to see singing in the rain in London with my mum and got some all day hospital appointments too!