Believe in yourself

Believe in yourself!

Don't let anyone stop you doing what you want to do! Original thoughts are what create amazing things

Tea

Do not get between me and my brew!

CF

Pretty accurate description.  I feel so extremely lucky that I have found someone who is happy to take on the burden of CF

8 months and 23 days

Thats how long it has been since I last started IVs!! Or will be based on when I next start them, which will be next tuesday.

After spending the last couple of months gradually and almost unnoticably getting worse. Day to day tasks getting that little bit harder to complete, things like that.

Also despite my best efforts the weight is dropping off. I have now lost a kilo in weight since being at clinic two weeks ago-thats not great news.

So on Tuesday I will be starting 2 weeks of IVs and will be doing them at my parents house so my mum can help do some of the doses and things like cook for me so I dont have to, so hopefully can get the best benefit from them.

I am getting my 'wonder' drug and 1 other, so although the side effects from the tazocin are not great the good stuff it does is worth it. I will be on anti-sickness tablets from the start this time so hopefully the tazocin side effects wont be so bad.

Gangshow

A Gang Show is a theatrical performance with a cast of members from Scouts and Guides. This includes adult leaders! There is a senior gang made up of anyone aged over 12 usually and a junior gang of anyone aged 8-12yrs.

The format of a Gang Show is essentially a revue or variety show; song, dance and short comedy sketches are the most common items. The number of items varies (commonly ranging between 12 and 25): some are stand-alone, others are a series of songs conforming to a chosen theme, or a running gag.
A typical show will include a big opening number, some comedy sketches, several musical items with a mix of group and solo work, dance numbers and of course a grand finale. Some of the material is well-known, other material is original to Gang Shows, sometimes even penned by the young people themselves.
The show's format was created by the late Ralph Reader CBE, the original Gang Show producer, who went on to write much material for Gang Shows, sketches musical numbers and Pageants including the signature tune On the Crest of a Wave.


So now you all know what a gangshow is- you are probably still wondering why I am blogging about it. Well the district that I belong to as a beaver scout leader has just started their rehearsals for gangshow. We hold one every 2years. This will be the second gangshow I will be a part of.

The last show my lung function was at 68% during rehearsals and I was ready to go on IVs at the end of the week with a lung function of about 62%. At the start of the rehearsals my lung function is sitting at 56% which is my apparent new norm. I thought I would be ok and that although I found some of the rehearsals tough last time I would still be ok. I am currently being proven wrong. So far we have only sung through the finale songs and that is enough to make my chest sore and achy because its getting tight and wheezy and generally making me cough my guts up. Things could get interesting but I still plan on perservering. I refuse to let this disease stop me from doing something else I enjoy doing.

So singing songs such as 'Religion of life' and 'crest of the wave' is most definitely interesting with a 56% lung function but I will not be deterred.............

Friendship musings...

So I've been doing some thinking, mainly about how so much has changed in the space of 9 months. Someone who I considered to be one of my best friends stopped talking to me, mainly from what I can understand was a difference in an opinion and she didn't like it. I've been luckily enough to meet the man I plan on spending the rest of my life with and he has never met her and she has never met him. I never dreamt she would be out of my life, but so it seems is the case. Every day I see things around me that remind me of her, I still have photos and presents that she gave me all around my house and I dont think I will ever be able to get rid of them either. Just tonight I used the 1 person teapot and cup set she gave me, realised Freddy is still sat in my living room (hes a me to you bear she gave me in my 2nd yr of uni) watching over me and in the kitchen above my sink is a plaque about friendship, also from this person. Then on facebook I saw these 2 photos which resonated with me quite alot over this situation:

The first one especially as I have tried 2 or 3 times in the last 9months and there has just been no response or interest. I don't even know if she still has the same number or email address. The second one is true also because all I did was speak honestly about my feelings and thoughts and offered an opinion and its been blown so out of proportion that it seems she was angry about honesty.

I need to look to the future and stop thinking about what could have been and why some friendships survive and why some die. I think about this alot and there will be many a musing on this topic.

The fleetingness of happiness......

Life is a funny thing. True happiness is this rare and fleeting thing that can pass many by completely while others seem to be able to keep a grasp on it for longer periods of time and feel perfectly content.

A psychologist called Maslow has even developed a theory on this called the hierarchy of needs, with the highest point that any body can reach is self-actualisation. The theory starts with the most basic of physiological needs- food, water and sheleter. How is anyone meant to survive or feel happy if any one of these are removed and continues to progress with things like comfort and security in job or home. The need I want to talk about is self-actualization, which for many believe is only a fleeting achievement and easily taken away. Self-actualisation is when every other need in the hierarchy in the system is fulfilled and you literally are on top of that world. A good example for self-actualisation is an olympic athlete finally acheiving that gold medal. The feelings this provides will fulfill the self-actualisation need, but only for a temporary time before some other thing will come along which takes the shine away from it, the need to train harder and faster for the next competition. So for those athletes never lucky enough to get a gold medal may never achieve self-actualisation but then you have examples like Michael Phelps who have received lots of gold medals and thus have a prolonged period of self-actualisation.


For those who are interested these thoughts and this blog come from the fact I got engaged. This for me is one of my periods of self-actualisation. I could not be more happier than I am right now. However what I am failing to understand is why there are people out there, people who are supposed to care and mean alot to me are trying to take away my happiness by only uttering every single negative thought they can think of instead of just being happy for me. I am pretty certain that when my sister and brother both said they were engaged they just got 'congratulations' and 'when is the wedding?' and were not bombarded with questions such as where are you going to live, what about hospital appointments, what about getting your medication, are you sure thats a good idea, wont you miss people if you move away, what about your hobbies, will you give up scouts, are you sure its a good idea.

So to clarify my situation- yes i am engaged, yes in a few months time I will be moving an hour away from my home town to live with my fiance. Yes I will still continue to go to hospital appointments and take medication.

Fine be worried about me and miss me but let me enjoy my happiness for a short while before you bring these things up. I am not a naive 18 yr old, I did think about all of these things and they were talked about before a proposal even happened, please give me some credit.

I feel like I may very quickly tattoo on my forehead 'if you cant say anything nice or positive dont say anything at all'.

So now I have ranted and feel ever so slightly better for it and even made some use of my psychology degree (which I will also point out the same negative people over the news of engagement and moving house were also extremely negative about me going to university and oh look I survived and did do well there) I will end with a picture of my ring!

Exciting news!!!

Exciting news going on in my life right now:

I got engaged at the weekend!!!!

So extremely happy right now. When you find the person you can't live without and feel like you are complete when they are around you just know. I've never felt this way before and can't wait to begin planning the wedding and spend the rest of my life with D.

My last week of August was spent in Wales with my bf and his son. It was a good week and we did lots of different things, including celebrating 2 birthdays! Below is some photos from the week:

We spent our days playing and visiting his family. I got to try out Mario & Sonic at the london olympic games on the wii whilst visiting his sister and nephew and nieces. The kids managed to beat me quite thoroughly but I enjoyed it and it reinforced my wish to have this game in my possession sometime soon. Hopefully I will be able to convince my bf he will want to play on it occasionally too.

We visited his other sister for tea one evening as well which was highly yummy and was to my knowledge the first time I had eaten chilli and I enjoyed it!

A soft play area was visited and a walk round some shops was indulged in afterwards for the adults whilst the child slept.

We spent sometime at a place called Gypsy Wood (which I think was most definitely for the adults) which had a model railway set-up and you could look for fairies as you went exploring. A trip to the swimming pool was included and was an experience which was enjoyed by all.

Since getting home I spent my birthday money on amazon purchasing some items of my wishlist. These items include: Brothers & Sisters Series 5, The big bang theory series 5, Life Season 1, Ladybird classic collection 1000piece jigsaw, The greek myths: The complete and definitive edition (book), Best shop in town jigsaw (1000piece), The hour I first believed by Wally Lamb (book), For One more day by Mitch Albom (book) and The IT crowd series 4.

That was some good money birthday spending. I am still waiting for it to arrive though as I went for super saver delivery and I got an email yesterday saying they had been delayed and wont be dispatched until the 10th.

After spending my birthday money I then continued to browse online at different things and managed to find christmas presents for my bf and his mum at some bargainous prices. So they were also ordered and bought and still being delivered in the post. I am going to feel extremely popular over the next few days with lots of different parcels arriving!

A hotel stay

So on the 22nd August I used the raffle prize that I won back in May. A night in the Lincoln Hotel for 2 with complimentary dinner included.

The lincoln hotel is a pretty posh hotel and our room offered us a cathedral view.

We arrived in Lincoln wednesday morning and did some shopping in the centre of Lincoln before moving upto the hotel, checking in and then browing some of the shops in the bailgate area. We also went into the first part of the Cathedral so I could show D the interior of it. I on principle refuse to pay to visit a church or cathedral as I dont believe you should pay to enter a religious building (I would however willingly give a donation if I was to enter a building like this), so we didn't go round it and consequently I've still not seen the famous Lincoln imp in there.

We then went back to the hotel to get ready for our evening meal. I must admit we both scrubbed up very well! I wore a dress for the second time in a week (!) and D wore a very nice shirt and black trousers. The resturant was really rather posh and 'fine dining' indeed! I had mushroom soup, steak and chips (6 chips on the plate!) and D had roasted leg of duck, corn fed chicken breast followed by chocolate fudge cake. The fudge cake was so rich that it was basically chocolate covered fudge rather than cake!!

After the meal we went for a walk down steep hill and then back up it!!

The hotel breakfast was particularly sublime. I dined on cereal, fry-up and fresh fruit. It was the most I had eaten for breakfast in a very long time!! We then checked-out and made our way back down into the main part of Lincoln and visited the Range. Where we purchased a couple of photo frames to adorn D's living room walls and a couple of other pieces.

The experience was amazing and there is no way I could ever afford to stay in a hotel like that just because. We worked out with the room we was given and everything that was included in the evening meal it should of cost around £400 to stay there!! Thats a crazy amount of money to spend on one night away.