Saturday, June 30, 2012

I have a tendency to not believe people when they tell me this, which is why I am posting this one.

Friday, June 29, 2012

Thursday, June 28, 2012

So I'm not really sure I have a lot to blog about at the minute, so for the next few days you will see a picture a day of some kind of saying that I think is nice or relevant to my life in some way. There may or may not be explanations.

This is my first and hopefully any followers of my blog will get this one straight away:

Sunday, June 24, 2012

Guess who I met

Look who I got to meet while out at a scouting event yesterday!
It was amazing. There was no fanfare or anything that she was there helping out (in a tent that was planting seeds of different varieties), so were a little stunned at first. We recovered enough to ask for a photo to be taken. Didn't have anything to get an autograph on, otherwise I would of asked for one of those too!!

Thursday, June 21, 2012

Clinic update

Well that was an interesting clinic appointment and not really in a good way.

Since my last clinic appointment 2months ago I have lost 3kg in weight (I thought it was only 1), this is not good. My lung function has remained the same at 55% (lung function is worked out on your gender, height and weight of an average person. So it is possible to get more than 100% as you have better scores than expected of an average person of your gender, height and weight).

So yay lung function isn't worse but this is still not great. As when you look at it, it's only really 1 working lung out of the 2.

Then the dietician came in! She started looking back on my notes which show what my weight and lung function have been previously, in a nice handy sheet where they get written on. This time last year my lung function was 20% higher and my weight was 7kg heavier. To think that 55% has now become my accepted baseline is worrying.

Even at the start of this year I was about 65% so in 6months I've lost 10% and they aren't bothered and think its ok.

It's a little bit scary and depressing when you look at the numbers like that.

However as is the case in Cystic Fibrosis numbers aren't everything and you have to go on how you are feeling as well. Sometimes the numbers can be great but quality of life and how you feel can be rubbish and the other way round. My numbers aren't great but I feel ok. I am capable of doing pretty much everything that I want to do without too much trouble. Ok it takes me longer to recover than most people but that's life and I deal with it.

All I know is the dietician is going to bring these points up at the end of clinic in the team meeting that they have. So who knows what will happen next, if they will continue to just see how I do, or if they will want to make changes now.

After this clinic appointment all I know is- my annual assessment review (a yearly thing where there is a day of lots of different tests to assess overall health and then an afternoon where the results of said tests and review of the years events are relayed to you) is not going to be a particularly positive one!

Monday, June 18, 2012


So my weekend was spent in the grounds of Burghley House on LinCub. Which was a county camp for all cubs. We went as a district contingent (there were 10 districts there in total), with a total of 90 cubs and 37 adults camping in our contingent alone! I think in total there were about 800 cubs there and then enough adults to cover every groups required 1 to 8 ratio plus 1 and then whoever they had as their catering teams for the weekend!! Thats alot of people.

We arrived friday evening at about 5.30pm after delays before leaving which due to proper lack of communication shouldn't of happened but there we go. It certainly wasn't our fault but the actual leader in charge of our contingents fault (which was just 1 of many really over the whole weekend but there we go). So we arrived to find that due to the high winds that the tent we were going to have our cubs sleeping in was now broken as the pole had shattered and that our 5 cubs would now be sleeping in a tent really designed for 4. We weren't too worried as a few of them were quite small and it just meant they wouldn't get cold at night! All the cubs were in bed by half 10, quiet by 11 and asleep by midnight. This is pretty good going for a first night on camp, so no complaints there. I was in my tent at about half 11 and was all comfy cosy. I always share with my fellow leader Jo, who I have known literally all my life (she is 5years older than me and was good friends with my older sister but now we are the close friends and she held me as a baby!). We share a double air bed in our own sleeping bags, it just helps to keep us both a bit warmer at night. So double air bed, blanket over the air bed (helps retain warmth better), then I was in a vest top, my pjs, a hoodie, wrapped in my camp blanket (just an ordrinary blue fleecey one but it has all my badges sewn on it from camps and stuff, which you show off round the campfires normally hence 'camp blanket'), then inside my sleeping bag. I also had my pj trousers tucked into my socks so my feet warm and they didnt ride up in the night making my legs cold. I must say despite the wind I was quite toasty so all good :o) (I am aware this paints quite an image!).

Saturday morning I was woken up at 5am by the noise of lots of cubs making lots of noise for such a very early start in the morning. I dozed until about half 6 where I gave up and realised there was no chance at all of anymore real sleep, so I got up. I was pleased to see that my cubs had listened to my instructions (of staying in their tent even if they were awake and had got dressed until I told them it was ok to get out of their tent). I couldn't believe that groups were letting their cubs get up and roam around and make as much noise as they were doing. Some groups cubs were playing football at half six in the morning as if that was acceptable- not overly impressive! By the time breakfast was served at 8am, most of the cubs were absolutely starving because they had been awake since 5am. Breakfast was cereal followed by a full cooked breakfast of bacon, sausage, beans and eggy bread.

Most of saturday was spent checking the cubs were happy on the many activities they could do, helping out on the activities we as a district were running (camp donuts, fondant icing sweets and a craft activity. The cubs coloured in some pictures that were on a sticky acetate and we then transferred them to plastic tumblers, so they had a plastic cup with the lincub logo on as a memory of their camp). I was also our districts camp first aider for the weekend. Which meant I was in charge of all the kids meds (inhalers, hayfever tablets mainly) and dishing them out when needed and any minor injuries such as grazes, bumps and bruises. Anything more major than that they were sent to the first aid tent. So my day was also spent sitting in the marquee we had set-up doing basically nothing just incase one of the cubs came back hurt. This was the plan of the other leaders to ensure I didn't over-exert myself (which I have a rather large tendency of doing).

The evening meal saturday wasn't overly impressive choices for 8-10yr olds to be honest chilli or curry. I know at least 2 of my kids sat there with just a plate of plain rice and 2 slices of french stick. I think that planning could of been a bit better but never mind. The pudding was swiss roll and custard. Lunch had been sandwiches, packet of crisps and a slice of swiss roll. Fruit was available freely all day and quite a few cubs made good use of that.

There was a 'campfire' of sorts in the evening. The weather was too windy and rain was threatening for them to light an actual campfire but we all sat around for about an hour singing campfire songs all together. One of my cubs was so tired he fell asleep during one of the songs. Which was quite impressive as the song was 'Everywhere we go', and I'm sure if people are familiar with this song they will realise what a feat that is. So at that point I sent him away with one of the other leaders to go to bed, which he went to with no complaint. He is one of our youngest cubs though, as he has only just moved upto cubs from beavers and also has some behavioural and learning difficulties which he gets over 20hours of statemented one to one time at school for. So I wasn't surprised to see him falling asleep, and he did fabulously all weekend and caused us no trouble at all. At his previous group he had the nickname of 'the runner' as if they were in an open space or the hut door was left open he would wander off. However we have found he likes to know where we are at all times, so never really strays so that we have to worry about him at all and if anything you begin to wish he would wander away for a short while. You ever had the feeling you would like to change your name because you have just heard it too many times in to short a space a time??????

Sunday morning was a little better and most cubs didn't surface until between half 6 and 7am. Another morning of activities was held for the cubs, whilst the leaders spent the time getting all the tents down (about 40 for our contingent) as quickly and safely as possible whilst they were dry before the rain started and meant we would then have to find space inside huts and meeting places to dry them. The closing ceremony for camp was 2pm and was finished by half 2. One set of our parents was already there and the others weren't far behind. So all of our kids were gone by 2.45pm. I finally left the campsite at 4pm, by the time I was allowed to get my car on site to load up kit and finished helping the other groups and loading up the van with all the big kit.

I was extremely tired when I got home as I always am after any camp. However I was so proud of my cubs. Not one leader from our contingent had anything bad to say about our group, and I can't say that for any of the other cub groups in the contingent. I don't recall having to tell any of my 5 off for any reason, so a very successful camp.

I am still extremely tired now and going to bed for a nap!

Thursday, June 14, 2012

Feeling happy

Is it worrying to anyone else that we are now into the sixth month of the year??? As in half way through 2012, I still remember celebrating christmas 2011 as if it was only a few days ago let alone 6 months ago!

So much has happened in the last 6months, some of it bad, some of it good, some of it excellent but overall right now I am feeling very happy and content with life. It's a nice feeling to have. I've discovered many things in this year and learnt quite alot.

I am still so very happy with the new love in my life, we might of only been together about 3 months but I don't remember ever being this happy in any of my last relationships. This person makes me want to have a family and get married and settle down. I've never wanted children of my own, so to suddenly feel this way is a little bizarre but nice.

I've discovered that being near the coast is highly beneficial to my health. I spent a week in Wales right near the sea and that was the best week I have had in a long time in regards to the amount of coughing I did. Normally I will have at least 2 or 3 very long coughing sessions in a day and in that week I maybe had 2 or 3 all week. When I realised this it felt pretty amazing. Ok, so my health still isn't in the best of places it could be, I'm pretty sure when I go to hospital next week my lung function still won't be its greatest and I know my weight is down (not a good thing) but still I'm feeling pretty happy that I could spend a week away and not feel overly ill.

My diary is filling up with lots of good things to look forward to over the next few months. I have a week in Cyprus to see my sister, I get to spend 3 days with my 2 favourite doggies Buddy and Alfie while my friend goes away. My twin brother is getting married in August and I am also using a raffle prize which I won in August. The prize is a 1 night stay in a very posh hotel with dinner included for 2, I have just got that booked in and also hopefully another week in Wales as long as no health issues get in the way.

I've just realised I have gone 3months without IVs, which is pretty good as I think I will leave clinic next week without any either. Which will then make it the longest I have gone without IVs (At least 4months) since leaving university 3years ago. Also a pretty remarkable achievement.

Overall I have lots of things to feel happy about right now and hope it continues for quite some time!

Monday, June 11, 2012

So to randomly start this blog post I was just looking at my stats and since I started this blog in May 2008 it has had 5268 views. I thought it was alot until I realised how long I have had this blog for and then realised it really isn't. I don't even know who it is that is viewing my blog for the most part, can maybe guess at a few of the people!

So for the last week I have been away on holiday in Wales. I went away with my boyfriend and his little boy. We stayed with my boyfriends parents. It was a good week with lots of fun times and laughter. We even managed to get to the beach one day (yay!). A birthday was celebrated (my bfs), a jubilee party was held. I saw ALL of the tv coverage of the Diamond Jubilee. Now this was alot more of the jubilee than I ever thought I would watch but I'm glad I saw it.