28 May 2011

Its meeeeeeee.

Hey guys! I'm still here, honest!!

Laziness, moodiness, lots of sleep and 2 days with no internet, meant I was pretty quiet while I was in Papworth.
But I am now home!! I was only there for 9 days!

I started to feel better, and asked if I could go home, and it was all good. =)
Lungs functions were up to 45%, not perfect, but better than the 37% I had when I went in.
I'd reached the point, where the benefits of being at home, and getting decent food, and proper sleep, far outweighed the benefits of having drugs and doctors and physios.

Gavin came to visit me on thursday, which was nice. =) We watched Patch Adams (Love that film), and I ate HARIBO BEARS! I also took a mini shower in Cherry Lucozade, thanks to him. Grrr! Haha. He shook my bottle up, and I forgot and opened it... Oops.
Hes also responsible for the discovery that I like Cherry Lucozade. And Lucozade will now make EVEN MORE money from me. Lol.

Also, the most exciting thing everrrrr... I'm going to see Stiv!!!
Hes coming to London at the end of June for some geeky sonic thing, and I'm going to see him and Claire on the sunday, and spend the day with them!!
Means getting up. In the morning. On a sunday. The day after Danni's 18th Party... Haha.
There are no words for this kind of excitement though. After 3 years I'm FINALLY going to see Stiv properly! I can hug him!! =D
We're also planning for me to go up and stay with them in July. I'm so excited.
Stiv made me smile while I was in Papworth too. Sent me a Glee Easter Egg and Mug. LOVE IT!

Spent soooo much money this week.
Went a little crazy online on monday, ordered a load of DVDs (including season 1 of Glee!) and 2 tshirts.
Then today I went into town, and exhausted myself walking round every shop there! Or at least it felt like it. Did get a dress, some shorts, and 3 new tops though. And some shoes. And I dont need to buy another card until July.
Note to self: Do not become friends with anyone else born in June or July. Lol.

Love xx

20 May 2011

Sorry Guys... Moody Cow =/

Okay, so, I've become the most moody bitch on the planet the last 2 days.

I think its something to do with the drugs, because I just feel drained, and ten times worse than when I came in. I just feel really down, but I cant quite put my finger on what is wrong. I just dont feel right. My head is all over the place.

I can feel myself being miserable, but I cant snap myself out of it.
I daresay I'll settle, in a few days when my system gets used to everything.

My mood swings are epic tbh. One minute I'm giggling, the next I'm crying.

I've just got no energy like 95% of the time. I'm being terrible at replying to people, the only people I am really talking to are my parents, and Stiv, and Gavin. I just have no patience with anyone or anything. And I feel bad, but I cant seem to find the energy or the patience to sort myself out. Sorry guys.
Its nothing Personal. Love you all. Just struggling for a few days.

If you do want to get hold of me, inboxing me on facebook is probably your best bet.

On the plus side... Haribo are half price in the shop in the village. YAY!

Lots of Love xx

19 May 2011

Didnt see that one coming...

So I come to clinic yesterday morning...
My lung functions were down to 37%. Only 1% off my lowest ever. So things clearly arent great.
I see the doctor, and decide to start home IVs, while I wait for a bed. Which is exactly what I expected to happen.
So, I go and hand my prescription in to pharmacy. Make my appointment for next week. And go back to wait for the nurse to access my port... I'm sat there reading my book, and the nurse comes in and says they have a bed. Now.
That NEVER happens!

Turns out it was for the best. Had 2 bleeds last night. =/ Not fun.

Anyway, Dad was my hero. He finished work early, so he could bring my stuff up last night. =) Which was lucky because I had nothing with me!!

So. I'm back in Papworth. Fun Fun.

On Fosfomycin and Imipenem. So I feel like Death. =/ Nice.

Complete lack of energy anyway, so gonna leave it here for now.


18 May 2011

IV Stashes, Mega Cute Songs, and Broken Phones

Clinic in the morningggg.
I'm actually looking forward to it... Thats unusual for me. =/
After 3 days of coughing up blood now, I am desperate to get there, so I can start getting better! I'm going out of my mind.

I've been to the chemist under my bed tonight, and sorted through what IVs I have stashed under there... So now I just have to remember tomorrow, and not let them send me home with any MORE! Get some of what I have used up!
Got 5 days worth of Fosfomycin and Imipenem.
And about 8 days of Tazocin... Which I'm allergic too. *Rolls Eyes*
And 3 weeks worth of Tobramycin.... Which we've stopped using because of the stupid ringing in my ears.
And dont get me started on the amount of saline and heparin I have!!

I'm trying to find little reasons to smile, because thats what keeps me sane when I feel this crap.

Dads being unbelievably nice to me today. I think he can tell how rough I feel. He took me out for breakfast this morning... Yum! And he came home with Lucozade and Milk bottles for me tonight. =) I'm easily pleased.

And Gavin made me listen to an amazingly cute song from Sweeny Todd. I've never actually seen the film, probably going to have to now. (Need to go to blockbusters anyway... Pay the fine for my late returns. Oops.) Lol. Its stuck in my head now, but I love it. I have also listened to it about a million times already, which wont have helped. Hehe. =)

♫ No one's gonna hurt you,
No one's gonna dare.
Others can desert you,
Not to worry, whistle, I'll be there.

Love it. =)

Stivs gone and broken his phone. While trying to fix it, ironically. Haha. Which is kinda silly. I'm a little bit lost not texting him constantly... He'd better hurry up and FIX IT! =/ MEH!

Thats what he gets for having a stupid fancy touch screen phone.
Should get an old brick, like I have. I swear, this thing is indestructable!! Probably just as well, my history with phones is... Dodgy... At best. Lol.

Oh well. Off to bed for me, I guess.
Got to get up at 7am. Eeeep.
Go and discover what my lung function is doing. Not looking forward to that. Its one of those things I never really WANT to know. =/ Lol.
Seeing as I'm out of breath just talking for very long, I'm not expecting great things.

Lovelove xx

17 May 2011

The Little Things.

Sometimes, its the little things that mean the most.
So I thought I'd explain some of the little things, that I have grown to appreciate. =)

- Text Messages. I've mentioned this before, I believe. But I do love getting text messages. From some people, in particular, but they know who they are. Lol. I love having texts when I wake up in the morning. Knowing that someone was thinking about you, without you having to text them first. =)

- Hugs. This one is fairly common I guess. I love hugs. I am very cuddly... And sometimes a hug can fix anything. Maybe only temporarily, but it can. I would be quite happy to just snuggle up on the couch and watch tv, and be hugged. Lol.

- Letters and cards. Proper handwritten post! Its so rare to get anything handwritten anymore! And of course, anything that isnt from the hospital, or the benefits people, is a bonus.

- Holding Hands. This is irrelevant, while I'm single, but I used to love holding hands. Just that small show of affection. Not over the top, making people gag... Haha. But just enough to show the world that you are together, and you're happy for them to know it.

- Stars. I LOVE the stars. Absolutely adore them. I quite often just sit on my windowsill, and stare out at them on a clear night. They're just another example, of the world at its most beautiful, and most simple.

- Nature. I have always been easily pleased. And always loved something pretty. So nature is a fairly obvious one. There is so much natural beauty, all around us, all the time. The trees, and flowers, lakes and rivers, beaches, and forests... So much, everywhere we look. Even the weather is beautiful at times. A fresh blanket of snow. The sunshine, hitting water. Frost settled on the trees and grass, like a layer of diamonds...

- My Best Friends. Stiv and Emma. The are both amazing, in their own ways. Stiv may be 250 miles away, but I know I can always tell him anything, and trust him more than anyone. Love him lots. Emma, I've know since I was 6. No matter what, I know if I needed her, she'd be here in an instant. They keep me going.

- Photos. At times, I think I probably take too many photos. But I love capturing all those moments, and memories. Sometimes, when I'm not well, its nice to sit and flick through them all. See the smiles, and remember exactly why I keep on fighting... So there can be more memories, and more smiles.


15 May 2011

Return of the naughty lungs...

Firstly, I would like to thank anyone that took the time to read my last post, about life with CF.
I had a few lovely messages from various people, who said it was well written, and it means a lot that people read the things I write, let alone take the time to compliment me on them.
Its easy, and hard, to write about something so close to your heart. Its really easy to know what I'm feeling, but not always so easy to put into words for everyone else, especially with a subject which has so many different emotions attached to it.

Ah, so my lungs played nice for a little while. But they're back to their old tricks.
Went with Dad for a drink tonight. Did nothing but sit, and watch the band sing. And still ended the night with a nice bleed.
Stupid lungs. When will they learn they arent supposed to bleed!!
Wasnt my worst bleed ever, but it was still fairly nasty. And I'm still bubbling now.
I hate that feeling. You can only possibly understand it, if you've coughed up blood from your lungs. Its very strange.

Looks like a trip to Papworth next week then. =/

I feel very Meh.
Meh is a good word tonight. Meh Meh Meh Meh.
Bird is overrated. Meh is the word.
Even Gavin said so. And hes clever, so it must be true.

Oh well, better to go to Papworth, and get it sorted before I feel really bad. Leaving these things does no good.

On the plus side, I have milk bottles. Which makes everything a little bit better.

Went to Tesco with Dad and Ryan earlier. We've walked round, got what we wanted, I've wandered round a few feet behind them, head in my phone texting Stiv... (Nothing new there... Haha.) Next thing I know, Dads telling the security guard that some random girl is following them around!! LOL! I do love my Dad at times, hes a nutter. Security guard was intelligent enough to know it was a joke. Can you imagine if he hadnt? HAHA!
I do have the most random giggles with Dad. Think thats why we're still fairly close... Because we have the same stupid sense of humour. Lol.

Saw EMMA last night!!! Was extremely happy. It had been over 3 months since I saw her, and I was missing her loads! We just had a quiet night in, and watched the Eurovision with her brother and his friends.
They were playing drinking games. They gave us countries, but we didnt join in with the drinking. I got Romania, Serbia, Switzerland and Hungary though... So I wouldnt have drunk much anyway. LoL!
And shes home for the summer in 2 weeks. So I cant wait.

This summer should be awesome. Last year everything kind of revolved around Matt and what he wanted to do, but this year I can fill my time as I wish. =)
Hopefully I'll get to go and see Stiv at some point, because that would be awesome. And hang out with Emma. And then harass anyone else I want to. =)
I also have to force someone to watch Labyrinth with me. Hehe!

I also, thanks to Emma, have this overwhelming urge to make my own pizzas. Well, not the dough... Although, I'd do that if I knew how! But like toppings and stuff, and then cook it. She did it last night.

Also, on a random note, I have discovered the song chasing cars makes me cry. Like proper crying. =/ I swear, it is not normal to be THIS emotional. Unless you're like drunk. Or pregnant. And I am neither or these things!!

MEH! Lol.


14 May 2011

Life With CF

What is it like to have CF?

This is a post I've been working on for a little while. I've changed it so many times now, I dont think I'll eve be completely happy with it. But here we go... This is what has survived the many edits.

This is just what CF is like for me...

Well, to begin with, there is no such thing as 'normal'. No two days are the same, and when you go to sleep at night, there is no knowing whether the next day will be a 'good' one or a 'bad' one, or anything in between.

You cannot see CF, as such. Until you are really ill, and needing oxygen or a wheelchair, there are no visible signs that you're 'sick'. Maybe a bit pale and skinny, but thats about it. (Although, I dont even have the usual CF weight problems at the minute. My weight is very very good.)
Sometimes there are ports, or pegs, to give little clues, but theyre easily hidden.
This can be amazing, because it leaves you free to live life without being looked at funny, without people staring and asking questions.
On the other hand sometimes it can be a pain because people dont realise, or they forget, that something isnt quite right, or you might have trouble keeping up.
Its a constant battle between wanting to be seen as normal, and making the allowances that you need to stop yourself from struggling quite so much.
For all its nice to be treated like everyone else, sometimes thats just not going to work. Lol.

Most days, its an effort to breathe. Usually breathing is just something people take for granted. Its a reflex. You dont have to think about it.
But a lot of the time, breathing IS something I think about. Because its really hard to get a proper breath in. My lung capacity is only 45% ish, on a good day, and I can feel it. When I breathe in its like my body wants more, it wants to keep going, but my lungs cant physically breathe in any more. I just end up breathing much faster than 'normal'. Its part of the reason breathing is far more exhausting than people realise at times.

And thats just the usual problems. Theres the days when it hurts to breathe, those days suck. When my lungs actually ache, its hard to explain. Just like a dull achey pain when I breathe in.

Then there is all the drugs.
Now I'm lucky in some ways that a majority of my drugs are tablets. I dont have any antibiotic nebulisers because I cannot tolerate them. They just make my airways close up. I say lucky... Thats not really lucky. I'd much rather have the nebulisers, and need less IVs in the long term.
But even so. I'm taking about 50 tablets a day. Plus the enzymes when I eat. So probably about 80 ish tablets a day. On a 'good' day.
I'm only 20... Its not what most 20 year olds have to deal with.
And I have to remember to actually take them. Even after years of taking all these pills, I still manage to forget. I dont know how its possible. Lol.
And making sure I've eaten before I take them in the morning. Because some of them just make me feel sick if I havent eaten. And throwing them up again, kinda defeats the object of taking them... Lol.

And remembering CREON! (Creon = Enzymes to digest food.) Omg. I'm okay if I'm at home, but as soon as I'm out of routine and enjoying myself, I'm not great at remembering to take them. Either that or I go out and realise that I dont have any on me, and then its the dilemma of am I going to eat without them or not... =/
When I was younger I always remember Mum stopping at the front door if she was going out, and double checking she had her purse, keys and phone. It was a little habit of hers.
If only it were that simple when I go out. I need to remember all the normal things, plus creon, inhaler, pain killers, reflux medication, tissues (in case I decide to cough up blood while I'm out)... And then if I'm on home IVs... Well, thats a whole other story. Haha.

It would be easier if CF was just one thing, but it affects so much. Its not just the lungs, its the liver, the digestive system, the sinuses, the joints and bones... Everything.

One thing that frustrates me now, is getting so easily worn out. You have to start making choices. Little things that most people dont have to consider. For example, You can go to the pub tonight with your friends. All you will do is sit and chat and listen to music, but if you go, you'll be too exhausted to go shopping tomorrow for *insert thing here*.
Or one that catches me out a lot is being asked to go out last minute, and then realising that if I want to go out, I need to wash my hair. If I wash my hair, I'll be too worn out to actually feel like going out anymore... So then what do I do? Lol.
Its so frustrating. I want to be able to do everything... I want to do everything my friends are. =(

One of the hardest things I've found about having CF, is making friends with other patients. Its the most natural thing in the world, to start chatting with someone and get friendly. We understand each other on a different level, have things in common, share feelings and hopes and fears...
But once you know them, once theyre your friend, you have to watch them suffering with all the same problems. Knowing there is nothing you can do to help them. Its horrible.
One of the most horrible feelings I've ever had was being in hospital just before Nick passed away. He was only a few feet away, and I wasnt even allowed to go and give him a hug.
It hurt in a way I'd never felt before.
And all the time, all the time this crap is happening to the people you've grown to care about, you cant stop fighting for a second, because you have to keep fighting for yourself.

Theres always that constant feeling, of knowing things wont really get better. There is no cure, theres no magic fix... Things might be stable for a while or they could get worse, but getting significantly better isn't really option.

As much as it hurts though, my friendships with other CF patients mean the world to me. I wouldnt give them up for anything.
Some of them have grown far past the fact we have CF, and become my closest friends.

Its one of the very few advantages to having CF, it has brought some amazing people into my life. For that, I am very grateful.

It can be completely depressing at times. I have my days when I just want to stay in bed all day, and cry, and ask 'why me?'.
But at the end of the day, it could be worse.

It could always be worse.


(Hope most of that made sense in the end... Lol.)

13 May 2011


You know when theres someone on your mind, and everything you see, everything you hear, every song you listen to, EVERYTHING makes you think about them, and your mind somehow connects everything to them...
Fucking annoying, isnt it? But I still love it anyway. Makes no sense. Lol.
I'm already the most insanely emotional person I know, with an ability to cry at anything. I dont need any added help! Sigh.


I dont really understand it. But I daresay I'll pick it up as I go along.
Only really got it as a new way to stalk Stiv. Haha. =)

FINALLY heard from the ESA people today. Theyre going to give me money!! Just need to send them a medical certificate, and like prove I'm not pretending to have CF or anything... (I bloody wish...) Haha.

Anyway, once thats done, I'll go on the assessment rate while their doctors assess me. Again with the making sure I'm really ill. Lol.
But thats £50 a week I didnt have before!! Plus they'll backdate it to when I sent my forms off. Yay.

I FINALLY wont be reliant on mum and dad for every tiny little thing!! There are no words to explain how happy this makes me.

In other random news, I have an obsession with dairylea cheese spread!! Omg, I had forgotten how much I love it.
Oh and I managed to throw myself the WHOLE way down the stairs yesterday and not hurt myself! Proud much, that takes skill.

Lungs are acting up a little bit. =/
It has been 6 and a half weeks off IVs, but I would like them to hold out a little longer.
I dont feel terrible, yet, but I'm getting quite coughy, and I've had a couple of little bleeds over the last few days. (Which I'm working on hiding from Mum... Cos she gets all over protective.) I've got tranexamic acid at home anyway, so I've started that, and I guess I'll ring Papworth next week if I still dont feel great.
I've learnt not to leave it til the last minute, I only end up regretting it when I feel like shit, and wonder why I didnt listen to mum. I'm relying on the power of positive thinking a bit though. Lol.

Got to stay well anyway. Got lots planned at the end of June.
CF Charity night down the pub. Evies 1st birthday!!!!! (Excited for that, much. Although she cannot POSSIBLY be nearly 1.) Danni's 18th Party. And Race for Life.
All in the space of 4 days!!
Got to find a costume for Danni's party still. ARGH!


12 May 2011

Bored of pretending.

I'm having one of those days today, I think.
I am just bored of pretending things are okay, when they arent. I dont specifically mean now, I mean in general.
Its been coming for a couple of days. It was Ryan that started all this off this time.

Ryans currently at college, studying his second year of a mechanic/engineering course. He goes to college all day Monday and Thursday, and half days on Tuesday and Friday.
He works sundays in the Co-op, and 3 hours on a wednesday. (Plus various overtime.)
Hes now got himself some work experience at a BMW Garage on a tuesday afternoon and all day wednesday, which will hopefully lead to an apprenticeship.
Now initially, I was really happy for him. But then he goes and ruins it all by being bitchy.

He turned round to me a couple of days ago, when I'd asked him if he could empty the bin, cos I was cooking dinner, and started on me, big time.
Going on about how he has 2 jobs, and is at college, and all I do is 'cook the bloody dinner sometimes', so I could do it myself and stop being so pathetic and lazy. Then went on to go on about how I should go and get a job, and then I'd understand how everyone else felt.

I added to my 'patheticness' at this point, and burst into tears.

Now, hes 18 years old. Hes not stupid. He knows WHY I dont work. He knows how often I'm ill and in hospital.

Its partly my fault I guess. I've always had this overwhelming urge to protect Ryan from the truth about CF. Obviously, as hes got older, thats got harder, but I'm still not completely honest about how bad I feel with him.
Hes my little brother at the end of the day, I was to be his big sister, I want to protect him and look after him. I dont want him to see me as being ill and sick all the time, regardless of how accurate that is.

I've always tried to protect my family anyway. Its just who am I. Right back when I was 14/15 and started being in hospital a lot.

Silly things like, the first time I had a longline put in, was gonna be first thing in the morning (like 7am) and I knew mum couldnt get there at that time, and she'd be upset that she wasnt there. So I didnt tell her. It seems silly now, but at the time it was a big thing! She came up later in the day, and there I was, with my longline. Lol.

I'd do pretty much anything to keep them from worrying. So its just annoying when I get stupid bitchy comments from people.
I just felt like turning round and telling Ryan exactly how much I would LOVE to have a job, and be healthy, and not feel like its a bloody effort to breathe most the time.

So, thats todays moan over. Lol.


10 May 2011

Crazy Cat Lady?

I have decided that between Guys, and Families, we would all be much happier, living alone with crazy numbers of cats for company. FACT.
Have you ever met a crazy cat lady, that is miserable? No, I doubt it. Lol.
So, thats my plan.
I'm gonna be a crazy cat lady.
My little hearts been working overtime recently, and it cant take much more. Loving hundreds of cats would be much easier. =)

Ah, if only life was so simple. Haha. It just doesnt work like that.
I guess it'd be awfully boring if we didnt have all these little dramas to keep us occupied.
Sometimes, boring would be nice though. Just once in a while. Lol.

I dunno how girls do it in the movies. They meet to handsome guy, make them fall in love, beat the bad guys, learn some amazing moral lesson, and manage to look hot the whole time. I cant manage to do any one of those things at a time! Haha.

I'm so bloody achey from sunday. Lol. The muscles in the backs of my legs are suffering. My lungs arent 100% happy either.
But I'll be alright. I feel better than I expected to be honest, I thought I'd spend most of yesterday in bed. Lol.

I feel amazing considering I've been out of hospital 6 weeks now. Normally I'd be struggling majorly by now, without throwing a 10km walk up hills into the equation!!

I had a good run this time last year too. Apparently April and May are good months for me. =)


8 May 2011

The Walk!


It was a fantastic day! Even the weather was pretty much perfect. The sun came out, most the time, but it wasnt hot enough to make it difficult. =)

This is us, before we started. =)

We set off at around half past 11. Everyone set off together. There were a few of the nurses who we knew from the childrens ward at the luton and dunstable hospital, as well as our old CF Consultant and CF Specialist nurse. Back from when we were still 'Children'. Hehe! ;)

The first half of the walk was definately easier.
Well, except a fairly nasty downhill part. Walking down a fairly steep slope, covered in leaves, when its rained overnight... NOT fun times! I'm amazed I didnt end up in a heap at the bottom!

We stopped at the Halfway point, just on the edge of Dagnall, for a rest and drink. We munched on Kitkats, and there were cakes, and muffins, and water and haribo. Clearly they know how CF Patients think... LOL! It must have been quite a sight for all the people driving past in their cars. About 60 of us, just randomly sat on the grass on the side of the road, munching away!
I tried to ring Mum, or Dad, or Ryan. But the signal around Ashridge is terrible. I had signal because we were a couple of miles out, but they were still back at the start, where there is no signal. So I failed at letting them know it was okay. Lol.
So I rang Gavin and said hi, and updated my facebook status (naturally), and took pictures, and munched. =)
And Stiv was texting me all the time I had signal too, the encouragement was much needed... Especially for the second half!
I was so grateful for all the support we got today. I had lots of facebook messages and texts, wishing us luck, and it was really appreciated!

Setting off the second time was always gonna be harder. And this was BEFORE we discoved most of the second half was uphill.
We definately struggled. Ellis got left behind a bit with one of the Nurses. My lungs felt like they were gonna explode. It was rough. Lol.

Then we decided to hang back, and wait for Ellis and Viv to catch us up. When we finally all got back together, we realised we couldnt actually see anyone else...
So yes, as was bound to happen, we ended up lost in the woods.
I'd joked about it. But it was bound to happen. Haha.

But, we found our way eventually. Probably not the proper route, but hey. We never like to be normal! Haha.

The worst part of all was probably realising we had finished, but the car was still a 10 minute walk away! Lol. And I couldnt even get a signal to get anyone to bring the car nearer.

Still, we made it. Despite everything, Me, Ellis and Danni, survived walking 10km around Ashridge, and so far have raised £609 for the Cystic Fibrosis Trust.

And at the end!! Finally!

7 May 2011



Tomorrow morning, just before 10, I will be heading off with Ryan, to pick up Danni, and go to Ashridge!!! =)

Little bit excited.

Although, the signal around Ashridge isnt great... So how I will survive without my constant texts to Stiv, is a worry. Lol. Because normally I cant go longer than about 20 minutes without speaking to him.

So far we have raised over £550, and I am so proud, and feel so lucky that our friends have been so supportive! I am so grateful to everyone that has sponsored us. And to those people who are even coming down tomorrow to see us!

I'm looking forward to seeing Ellis and Danni anyway! Because I havent seen them for a while.
A year ago, I'd never have imagined that I'd be sharing this experience with Ellis, and I'm so happy that I can, because I love her to pieces, and I love seeing her enjoying her new lungs. =)

Basically, I'm just very happy, about everything! Lol.

Link To Our Justgiving Page.

I'm feeling fairly positive at the minute.
Theres a lot to look forward to. I'm concentrating on keeping myself well so I can enjoy it all.

Anyway, I'll update tomorrow evening no doubt, and let you all know how it went!


5 May 2011

Midnight ramblings

Sooo. I wasnt gonna write a blog tonight. But Gavin apparently actually likes to read the utter rubbish I write, and he said I should.
Personally I think he just likes the excuse to read something that isnt about Biochemistry. Lol.
But I do like to keep him happy, cos hes pretty awesome. So here we go...

Disclaimer: I have been to the pub to see a band tonight, and had several drinks. I will like, triple check this before I publish it, but I apologise for any spelling mistakes that sneak through... Lol!
My phone usually saves me from those horrible alcohol influenced typos and spelling errors, because I use predictive text, and I can only use words in a dictionary... Haha!

I've had a good couple of days really. Yesterday evening I went out with Mum, Dad and Ryan, we drove up to ashridge and went for a wander. Did plenty of climbing. Well, not sure you can call what I did climbing. I wasnt quite so brave as the boys were. Haha. But still, it was a giggle. I'm sure I'm closer to my parents, just because we all act like idiots together.
And its sooooo pretty up there too, I love it.

Today I went shopping in Harpenden with Liz and Evie. Originally we planned to go look at Wedding cakes for Liz and Ashley, but the shop was closed, typically! So we wandered round the other shops. Lots of clothes and toy shops. Personally, I was with Evie, and prefering the toy shops. =) I'm such a kid at heart.
There was one shop that had this gorgeous wooden castle, and all the little wooden people, and I so wanted it!! And the little wooden train set.
Not sure I can ask for a wooden train set for my 21st Birthday though... Might get some strange looks.
I'd love to be a kid again. Watching Evies little face looking at all the toys, and pretty things. It would be amazing to be that carefree and content again.

ARGH! My arm hurts.
* Just tried to brush my hair... *
Yes, I have the attention span of a goldfish. Or worse.

I woke up this morning, and I've done something strange in my sleep, because my left arm REALLY hurts. I can barely move it without getting really sharp pains shooting up it.
I'm not used to these 'normal' pains.
I can deal with the CF related stuff, but I whine like a bitch about this kind of thing. LOL!
Dad says its a symptom of too much texting... LOL! I say hes just jealous because Gavin and Stiv dont text him... Haha.

Its only like a couple of days til my walk now!!
I'm so excited.
I'm so terrifed.
Haha. I am sure I can do this now though. Powered by adrenalin, determination, and probably Lucozade. ;)
Also, Got my CF Trust Tshirt in the post today. =)

I just hope that I can make Marc proud. He meant so much to me, and had such an impact on the person I am, and the person I will be. I wish there was a better way I could show it.
Miss him, very much.

So, thats my ramblings for tonight.

Love xx

4 May 2011

Annual Review Results =)

Had my results todayyyy...

All in all, it was better than I expected.

My lung function was the main down point. It has slowly declined over the year, as always. They showed me the graphy thing, its all a bit downhill. =/

BUT, on the other hand, my walk test was really good. The consultant said it was better than expected, for someone with my lung function. So thats always good. And the fact that my oxygen levels are normally pretty good, is another positive.
Just have to hang on to my lung function now. Try to stay in the 40's and not the 30%'s.

My IV requirement is higher than they'd like. But they admitted themselves, that theres not much they can do about that because I cant tolerate most nebulised drugs. Its just a case of doing the best we can.

My liver stuff was all pretty stable from last year. Had a few blips, but my IV requirement means my liver is always gonna suffer a bit.

And somehow, the glucose tolerance test results were actually better than last year!
Apparently overdosing on lucozade is the cure to diabetes... ;) Haha.
I still have 'impaired glucose tolerance', but the fact it was better, and not worse, is always a bonus.

Theyre referring me back to Addenbrookes now, because of my sinuses. Because I complained loudly today about how much pain I'm having. I'm reliant on painkillers, which I dont like. Fun times. Probably gonna mean more surgery eventually. Meh.

As for todays general clinic-ness, my lung function was 44%, which I was quite happy with cos I feel okay. Been started on Steroids and Antihistamines, because I've had a slight cough, but we think that could be more hayfever than anything.
Andddd, providing everything goes to plan, they dont want to see me for SIX WEEKS!!!!!

I'll believe that when I see it... ;)
Gonna have a damn good try though.

Now, time to enjoy my summer! And plot all kinds of fun stuffffff!


2 May 2011

RIP Charmaine xx

As if I needed them, CF has decided to come along and give me even more reasons to do this walk on sunday.

RIP Charmaine xx

Its a harsh reminder, of just why I wanted to do this in the first place. So that this will STOP happening.

So that we can stop losing our friends.
So that parents stop losing their children, and children stop losing their Mummys and Daddys. So that people stop losing their partners, the ones they love, the ones they care about.

Walking for those who cant...
Its a phrase I've kind of adopted the last few weeks, when I think about this. It keeps me focussed, on exactly why I'm doing this. Because I've had my moments when I wonder what on earth I'm thinking of.
And then I think of Marc. And Georgie. And Louis. And Ed. Ally. Jordan. Suzy. Gaz. And the list of people which is just far too long.

I want to walk for all those people we've lost along the way.
And all those people who physically cant anymore. I still can. I'm not reliant on oxygen or a wheelchair yet.

And not just them, but all the families and friends too. Everyone that CF is hurting or has hurt.
In the hope that one day, this will all be over. One day, CF wont be able to hurt anyone.

I know 10km/6 miles isnt THAT far, in comparison to marathons, and people who climb mountains and stuff. But to me, with my lungs, its practically a mountain. With a lung function that sits between 35-45%, it makes a big difference.


Thankyou, to everyone that has sponsored us so far. People have been amazing. =)

I'll leave you with a few pictures from Ashridge.
Drove up with Ryan today, so he knows where hes going at the weekend when he takes me and Danni.
Note to all Sat Nav users: Sat Navs LIE. Lol.

Love xx

1 May 2011

OMG. Its MAY?!

I cant believe its MAY! Already!!
I swear, its only JUST been christmas! This year is disappearing, I dont understand! Lol.

1 week to go, until our Sponsored walk!

The weather has been amazing the last couple of weeks, and I really hope it can hold until next sunday for us. It will be much nicer if the sun is shining. And we can take some really pretty pictures, because Ashridge is gorgeous at the minute. Its like a carpet of bluebells in places.
We've raised just over £430 so far, and we're still going! Its been amazing. =)

My friend Pete had his head shaved friday night as well. He has raised over £350 so far for the CF Trust.
My friends are so amazing at times...

I have sent over 1800 text messages in the last 2 weeks. Haha, I dont know whether to be proud, or a little scared.
I think Stiv and Gavin are probably responsible for most of those tbh. I dread to think how I'd cope if I wasnt on contract. Lol.

Gavin has been amazing, the last couple of months. Hes very quickly become one of the most important people in my life. =)

OMG. Royal Wedding!!
Now, I have to admit, during the lead up I was completely fed up of hearing about the wedding, and had very little interest in it.
But I got up friday morning, and put the TV on, and started watching... And I was hooked. It was amazing, the way William and Kate look at each other, the love was so clearly visible in their eyes. They looked so happy, and natural together. And of course, she was BEAUTIFUL. As was everything.
Except that hat Beatrice was wearing... LOL! She looked like a reindeer. Hehe.
I was so loved up by the end of it, and it wasnt even me getting married! Haha. It really was like watching a disney film.

Now, I just have to go find myself a prince. =)

Annual Review results on wednesday... Yay. Not.
That'll be fun. Go sit in a room, while they tell me things that I could have told them. That my lungs/liver/blood sugars/everything is slightly worse than last year. But not bad enough yet to do anything about. Thats pretty much what theyve said every year. Haha.
On the plus side, I'm single this year. Which means they wont surprise me with the whole sex and making babies talk I got last year. Lol.

Its my last chance for a check up before I go wandering 10km through the trees too, so hopefully it'll all be fine.
I feel okay, anyway. Not 100%, but okay. Just need to take things easy this week, and keep myself okay. =) And keep this stupid sinus pain under control. Lol.

Anyway, thats all for now I think.

Lovelove xx