29 April 2011

Lonely. CF Friends. And Stiv.

Having CF, can be unbelievably lonely. Much like having any illness I imagine.
Being ill, being scared, being worried. Theyre all lonely things anyway.
When you are ill, people dont seem to let themselves get too close. A lot of the time they just dont know what to say. They dont understand. They dont always want to.

You start lying to please everyone else. It starts with the 'I'm fine'. Or 'I'm okay'. Or 'I'm good'. When that couldnt be further from the truth.
But its less intense than, 'Well actually I feel rough. I cant really breathe, I feel like I'm slowly suffocating, and this morning I coughing up a load of blood, and every time I breathe in it hurts...'.

Which then leaves all those thoughts inside your head. Afraid to let them out. Afraid to scare people, worry people, hurt people, push them away.


So this is why I'm so eternally grateful for my CF friends.

I joined the forum, on the CF trust website, when I was 13. It was actually my consultant who mentioned it to me. At the time I'd never had an inpatient stay in hospital (I miss those days!), and didnt know anyone else with CF.
I was a lot younger than a lot of the people on there, but I read a lot, and talked to a few people. Without trying to sound braggy (is that a word?), I've always been fairly mature, and intelligient, so my age didnt put me off too much. And it made things a little less lonely.

As I got older, I got to know a few people more personally. And we grew through the bebo and myspace phases too. Now its facebook. And I know so many people with CF.

When I have a problem, I know I can probably find someone to help me within minutes. Cf related or not. I've met people who have become my best friends. People I could not imagine a life without anymore.

I remember vividly, being upset in high school, because someone had passed away, that I knew online. One of the girls asked me, why I was so upset about someone I didnt even know.
I couldnt explain then, I didnt understand fully myself.

Now I realise, you dont need to meet someone physically, to know them, to care about them. You just need to let them into your life, and into your heart, and for them to do the same.
Thats all it takes to know someone.
Take Stiv, or Pete Franklin, they probably 'know' me, far better than most the people I went to school or college with.

Even my family dont understand really. There are 2 or 3 people that they would probably understand about, but in general, they dont get why it hurts when my 'online friends' are sick, or when they pass away.

I dont really see them as online friends anymore. I love them as much as if they lived next door.

Some of the people I love most in the world, I have never 'met'.

Stiv is the best example of this.

I'm a little reluctant to write about him. Because he gets really big headed when I mention him... ;) Haha. Bless him.
He is the one person I trust most, in the entire world. I can tell him absolutely anything, and I do. He knows pretty much everything there is to know about me.
I love the way we can have really deep and meaningful conversations, and then switch to being random idiots, just like that. He makes me laugh, every day. And can always make me smile, no matter how miserable I am, how angry I am, how much I want to scream.

We live on opposite ends of the country, but thats irrelevant. We text, we call, we webcam, we msn, we facebook... And hes my best friend, regardless of the distance.
Hes been there for me through everything with me. The ups and the downs. The hospital stays, and the partying. The falling in love, getting engaged, and the breaking up. The family stuff, the friend problems, the boy issues... Everything. =)

Never having met him, doesnt make him any less of a friend.

Hes not the only one, not even close...
I love you all.
Each and every one of you.

Every day, you make me realise I am not alone. You give me someone to talk to, when otherwise I wouldnt know where to turn. You teach me something new every day. You look after me, protect me, comfort me, entertain me... You make my life so much better, just by being a part of it.


26 April 2011

Crazy Magpies, and other fun.

OMG! A magpie flew into my window!!
I'm sat here, minding my own business, and then BAM! Magpie goes splat!
It seemed to be okay. It landed on the shed, shook all its feathers out, and then flew off into a tree.
SCARED the living daylights out of me though! And kitty who was sleeping on my windowsill!

Crazy magpie caused some major giggling, once it was okay, and I recovered from my initial surprise. Lol.
Which naturally resulted in a coughing fit. *Rolls Eyes*

Stupid lungs.
They're driving me insane. Even when I'm not sick, I'm constantly stressing over them. Every little thing makes me panicky.
Every coughing fit leaves me wondering how long until I have to phone papworth, how long til I need IVs, how long til I cough up more blood.

On the plus side, I AM actually pretty well. =)
I even managed to CANCEL a clinic appointment today! Haha. I have my Annual review results next week. But for some reason they'd sent me an appointment for tomorrow as well.
I am not going up there 2 weeks in a row, when I'm feeling okay! Its pointless. I dont like them that much! I'll just stick to next week. Lol.
I cant remember when I last got to cancel an appointment! Normally I'm ringing them up to beg for extra ones! Haha.

I think the weather has had an effect on my health. I've been outside, and enjoying myself, and feeling generally happier, which has a positive effect on everything else. =)

Now I just want to make everyone else happy. I absolutely hate seeing my friends down, or sick, I just want to fix it!!
Feeling helpless is horrible.
I'm used to ME being ill. I can deal with that. I'd quite happily be ill all the time, if I could just see everyone else happy.

I'm definately looking forward to the summer now, and all the fun it shall bring.
I'm hoping that I'll be able to go and visit Pete in Southend at some point.
And Stiv in those strange northern lands where he lives. (This is code for, I've forgotten the name of the place... Lol.)

So YAY! =)


23 April 2011

20 Facts About Moi.

So this is something I'd seen someone else do. And decided to kill some time with myself...

1. I am insanely emotional. I feel everything so passionately. And I cry far too much. Not just when I'm sad, but also when I'm scared, when I'm happy, when I'm relieved, when I'm angry... Just all the bloody time.

2. I love to read. I would rather read a book than watch a film any day. Using your imagination to create a world in your own head, and then develop each character, make them your own, watch them grow, learn to love them or loathe them... I'd created my own narnia, long before the films came out. =) I've always loved to sit and escape into a world within the pages of a book, and I always will. Its got a magic of its own.

3. I love a good disney movie. I love the way the bad guys always lose in the end, and the good guys always win. I love the way everything always works out, and everyone is happy, and everything is beautiful. I love the way singing fixes everything. I love the happily ever after.

4. I love summer evenings. When the sun has gone, but its still warm enough to be comfortable outside. I love listening to the birds singing to each other.

5. I also love watching the sun set.

6. I am scared of Moths. I will run. I will scream. If there is a moth in my room, I wont go to bed. I panic, and my heart races. Despite the fact I KNOW they cant hurt me. I think its the way moths have no fear. They are quite happy to fly straight into your face.

7. I love my cat, far more than is probably considered normal. I also take far too many pictures of him. Because hes always either being cute, or stupid, both of which are fun to photograph.

8. The person I feel closest too in the entire world, lives 250 miles away, and I've never met in person... Strange? Maybe. But I would trust him with my life. I cant imagine not having him as a part of my life. I wouldnt want to.

9. I wish I could go back to high school and start over. I got good grades at high school. I passed my GCSEs with 3 As (Math, RE and Textiles), 3 Bs (English Language, English Literature and French), 2 Cs (Double Science) and a GNVQ Merit in ICT. I went to college to study childcare because thats what I wanted a career in, but my health and attendance meant I didnt finish. I passed everything I completed, but I was months behind. If I could do it over, I'd take A levels in subjects which were less practical, and could be studied from hospital more easily.

10. I do send far too many text messages. At least 2000 a month. On a quiet month. Lol! And I love it when I have 'Good morning' messages when I wake up. Its one of the little things I miss from being in a relationship. I would always have a 'good morning' and 'good night'. And the cute little text messages, to say 'I love you', or 'I miss you'. I'm also guilty of saving messages to read when I'm feeling miserable. =) Lol.

11. I always fall for the wrong guys. I think thats true of a lot of girls, I suppose. But I definately have a talent for it.

12. My lung function is now at a level where I almost certainly wont be having children of my own, unless I get magically better. Being a mum is the one thing I've always imagined myself doing, it comes naturally, I love being around children. It upsets me, but I'm dealing with it. It means I have even more love for the children of my friends, particularly Liz's little girl, Evie. And if Ryan ever has children, I will be the greatest Auntie EVER. =)

13. I am very close to my Mum. And it is rare that we fight. But when we do, we really go for it. We do it in style. LOL! I love her a lot though. And I love my Dad. I have amazing parents, I couldnt ask for anything more.

14. I take a lot of photos. I would love to one day take some kind of course, and learn how to do all kinds of fancy stuff, because I do enjoy trying to be creative.

15. I keep things. Lots of things. I have pictures and letters from a CF friend, Shahara, who passed away when I was about 15. I have artwork and notes from a patient (and her parents) I befriended on the childrens ward, who was 2 at the time. I have good luck cards from my GCSEs, and get well cards from my college friends and the nursery where I was on placement. I have notes from Pete, and cards from Megz on my wall in my room. As well as a christmas card from Stiv, because he drew a tigger in it. And a christmas card from Nick, which I treasure because he wrote it himself, despite the fact his eyesight was failing, and he could barely hold a pen. He wanted to write it. He passed away on the 23rd December.

16. Joint pain had ruined my handwriting. I used to have the most amazing hadwriting, but now it hurts to hold a pen for longer than a couple of minutes. =(

17. I drink an insane amount of Orange Lucozade. It cant possibly be healthy. But its so good, and it hasnt killed me yet. Haha.

18. Sun burn sucks. (I got burnt on my chest today... Its irritating me. Lots.)

19. I cannot swim. Its something I hate myself for, because I LOVE the pool. I'm slightly afraid of water, but I do love swimming pools. Not logical, I know. Lol. I also LOVE the smell of swimming pools.

20. I'm very easily pleased. I dont need big fancy gestures. And I'm a complete romantic at heart. I'd love to walk along the beach, or the river, or through the park, hand in hand, on a warm summers evening, and then lay and stare at the stars.
Soppy, I know. =/ But ah well.

22 April 2011

Tan lines and other stuffzz.

I cant believe how awesome the weather has been the last few days! I've spent so much time sat in the garden, reading or listening to music, or just listening to the birds sing or the children up the road laughing. =) Its lovely.

I got tan lines today!
This is quite an achievement for me! I usually go from pale, to burnt and back to pale again. With no tanned stage in between. But today I have very definite tan lines! Haha. YAY! Slightly burnt on my chest, and my shoulders though. =/ Lol.

Ryans birthday tomorrow! Well, in under an hour now! Scary.
My little brother is all grown up now.
Still my little brother though. Bless him.
He bought me 3 Kinder Buenos yesterday. Because I didnt want an easter egg. I dont really like chocolate much, which is weird I know. I just dont. I'd rather have sweets, or crisps. But he knows I've had a slight obsession with them recently.
He can be sweet. When he wants to... Thats just not very often. Haha!

I'm still waiting patiently for any kind of response from the ESA forms I sent off. Its only been 3 weeks, but just some kind of acknowledgement would be nice. Meh. =/

Urgh, on a side note, why are matters of the heart so damn complicated!! GAH!
Love, and relationships, and all related topics... They all just cause so much heartache.
Why cant it be like the movies. Where everyone just sings to each other, and lives happily ever after? =) Lol

Lovelove xx

Oh, just over 2 weeks til our walk!!
I'm actually looking forward to it, because this weather has me feeling pretty good, and I'm actually feeling rather positive about it all. =)


20 April 2011

Sunshine, Doctors and the better side of CF

I love the sunshine!
So so much. =)

I finally, after weeks of needing to, went and sorted myself out a GP appointment today to go through all my repeat prescription stuff, and make sure the GP and Papworth have lists that match.
Technically, this isnt my job. Because Papworth always tell them about all my changes. But unless I physically sit with the Dr and watch him change each thing in the computer, nothing gets updated. Lol.
They shouldnt be too far off. I think its only the inhalers and calcium that have changed since I last did it. =/ But who knows. Lol. Papworth are always changing something.

I've had 2 people say they'll do the Adidas 5k with me in London in September! So it looks like I'll be doing it now. =)
Once I get there I'll know plenty of people. But it was to travelling to and from London alone that bothered me. So now I have friends! YAY!

Ashridge walk is getting scarily close now. And yet so far away too. 2 and a half weeks is far too long, because I can so easily get ill in that space of time! LoL! I want to get it over and done with while I'm feeling fairly good! Haha.
We've raised just over £370 now in sponsor money, which I'm very pleased with! =)

My sinuses are still driving me insane. Some days are worse than others. Last night I was back to being in tears with pain, and barely able to even see. Today has been slightly better.
I still cant stop the painkillers though, or its unbearable. =/ Not ideal. Especially not with my liver.

Oh well.

I'll get there in the end. I always do.

I'm trying to accept that things wont ever be perfect. And I just have to make the best of it all.
Of course, some days thats easier to accept than others. Some days I want to scream, and cry, and punch things. (Which of course doesnt help, just means I'm more breathless than usual... Lol.) On the good days its easier to just try and accept everything. I guess thats what keeps you sane on the bad days. If I was just constantly angry and upset, I'd never survive, I'd go insane.
The good helps balance the bad, and so we continue...

Just have to keep reminding myself that yes, this is rubbish, and its not particularly fair, but its also not the worst thing in the world. I have my family, I have my friends, I have a safe and loving home, and I have food and water. Some people dont have that.

Plus, as much as I hate CF, it has had its positives.

I've grown up with a more understanding attitude towards other people I think. I try to be thoughtful of other peoples feelings.

I've met some amazing people through being in hospital. With and without CF. I've learnt a lot from them. About health, about life, and about everything else too.

I'm far closer to my parents, in particular my Mum, than a lot of people my age. Shes put up with a lot for me, and given up a lot to make sure I have the best life possible. I love my Parents so much.

I've made some truly amazing friends. I wouldnt have met Ellis or Danni if I hadnt been in hospital. I wouldnt know Stiv, or Pete, or Megz, or Tori, or so many amazing people if it wasnt for the fact I have CF. And to be honest I cant imagine a life without ANY of them. Stiv and Pete in particular, I can tell ANYTHING to, and there arent many people in the world I trust more than them.
I love my CF friends just as much as all my other friends. I care about them just as much, and they've made my life better in so many ways.
They understand me in different ways, better in many ways than my other friends, and even my family can. I can laugh with them, cry with them, and they are just as important to me.
Theyve taught me that I'm not alone. And I love each of them a lot for that.

I would make an awesome nurse. Or pharmacist. ;) HAHA!
I know far too many drugs, and can pretty much diagnose and prescribe treatment for half the things my family get wrong with them. Hehe.

I've also learnt to appreciate the work of medical staff so much more. As much as they can be annoying, and frustrating, they are working tirelessly to take care of other people.
Especially nurses, who have to do their own job, and being on the frontline, take all the blows from the patients when they get fed up, and keep the familys happy, and still keep a smile on their face.

CF has given me a sense of humour. I have learnt to laugh at things that would worry or shock other people. I often get asked by people how I can laugh about things.
Its simple. Laugh, or cry. I'd go insane if I didnt learn to laugh at myself. Lol.

Although I have lost friends to CF, its taught me to appreciate life, and friendship. I miss them everyday, but it gives me something to focus on. However bad things get, I have this overwhelming desire to live my life, and do the things they didnt have the chance to do. I dont want them to see me wasting what I have.

I try to appreciate everything, however small. And I'm easily pleased.
Sometimes its hard to show, but deep down, I know I'm lucky really.
I'm here, I'm safe, and I'm loved.

Lovelove xx

18 April 2011


Wide awake at bedtime again. *Rolls eyes*

My own fault though, I slept most the day away. Oops.

I went out last night. A friend of mums from work, her husband had a retirement/birthday party. And as dad was doing the disco with Ryan, and mum was going, I got invited along.
I wasnt too sure on whether I wanted to go to be honest. I know a lot of mums work friends, and they're lovely, but they're all older than me, and I wasnt sure what it would be like, or if I'd enjoy myself.
But in the end, I didnt fancy sitting home alone either, so I decided to go. It wasnt too far from home anyway, if I decided I wanted to escape.
But I went. And I kept an open mind, rather than telling myself it would be rubbish.

It was an awesome night though!
Had several drinks. Enough to get happy, giggly drunk, but not stupidly drunk. And danced the night away! Its the first time I've had a proper dance, and enjoyed myself like that in a very long time! I even wore heels. Thats a first since August I think! Lol.
I dont usually wear heels, because I'm 5ft 7 already, which generally makes me taller than most my friends. Lol.
Mums work friends may be older than me, but that certainly doesnt stop them!

Today though.
Today I suffered. =/
This is the bit that drags me down again. A few hours of enjoying myself, and now I'll suffer for days.
Always have to make a choice. Like I couldve gone to Ashridge with my friends today, but I wasnt well enough. So I couldnt go.
Just once it'd be nice to be able to do both, like my friends can.

Then I got annoyed by a friend. Who was comparing how quickly they can walk a km with how fast I can. And they're faster, despite having a lower lung function.
But theyve also had a lower lung function for much longer. Whereas mine has dropped 20% in the last 6 months or so. My body is still struggling to adapt.
Being told that you need to be faster for the sponsored walk you're doing and you could do better if you put in 100% is not helpful sometimes. =/
Its wasnt meant spitefully or anything. Just trying to show me that I can get better if anything I think, bit of encouragement and hope. But it really really got to me in a way they wouldnt realise.

So I sat and I cried. Until I fell asleep, because I already felt rough, and tired and was in pain.
Hence the being awake now. Meh.

I am stressing more about this walk than I'd like to let on. I'm terrified that I'm gonna struggle too much. Or start coughing up blood half way up a hill, cos I usually save these things for the least convenient moments.
I have to do it. Partly because I've been sponsored, but mainly because I'm bloody determined, and I WANT to do it.
All my reasons for originally deciding to do this still stand. I've still lost people who meant the world to me. And my friends are still fighting CF. Nothing has changed. So I'm still doing this.

I can do it. I can do anything I put my mind to. Marc taught me this, and I believe in him, even if I dont always believe in myself so much.

Haha, and despite all the stress, I still want to do Race for Life in June. I've wanted to do it for a few years, but I never have, and I've always done Relay for Life. This year I wont be taking part in Relay, so I am determined to do Race.
In memory of Lyndsey, my friend from school. And in honour of all the people who fight cancer each day, and each year.

And I still want to take part in the Adidas Womens 5k Challenge in Hyde Park in September for the CF Trust.
Its a little more realistic than this crazy 10km stuff I'm doing in 3 weeks. Haha. And if I can find some people who wish to join me, I will probably go for it.

I've kinda thrown myself into fundraising stuff recently.
With each person that passes away, the more determined I am. I want to see a cure. Or at least some kind of treatment. Whatever that may be.
Even if its not something that will be able to help me, I want to see it. I want all the little babies, and children, and all the future CF patients to lead happy and healthy lives, and have their own families.

I dont know if thats realistic or not really. But hey, no one ever said dreams and hopes had to be realistic.

Oh, and then tonight I had a random moment. Dad was messing around outside, while I was watching in my bedroom window.
He cut a glowstick open... And made pretty patterns on the floor. Haha! Much picture taking ensued...

This has been kinda long and rambly. I'm not sure how much makes sense tbh. Apologies. Lol.

Lovelove xx

15 April 2011

Ryans 18th =) And stuff.

I cant believe that in 8 days, my little brother is going to be 18!
I guess that in some ways, he seems older, just because I dont always think of him as my 'little' brother. He's 6ft 3, and he just doesnt seem the kind of person who needs looking after. Lol.
But in others, he is very much my little brother.
I'd do anything to protect him, and keep him from getting hurt. And for all we fight and argue, I love him to bits.

Hes not doing much for his 18th, because he wants to save the money for his car. Bless him. It'll be nice now hes 18 though. Just to go down the pub if we want to. =) And it means he can come to the Charity night down the pub if he wants. Yay.

My sinuses are still very much driving me insane. They arent allowed to be bad, because I have too much going on this summer! I cannot schedule surgery time! Lol. I'm supposed to stay home for 2 weeks after... Because they cannot cover a wound thats inside your nasal passages, and its an infection risk.
I dont want to give up 2 weeks of my summer! LOL!

My breathing is kinda dodgy too.
Its hard to explain really. When I'm just sitting around, not doing anything to use any energy, I feel really great.
Then I move...

I hoovered the living room today, and I was half dead. And walking home with mum, after meeting her at work... Its only about a 5 minute walk, but I had to stop twice. The second time I was so out of breath and dizzy that I could see about 4 of everything. =/ Not great.

I'm sooooooooo fed up of having no money. Its driving me mad. I've heard nothing from the ESA people. And the DLA people had just sent me a letter to acknowledge receiving my forms, and tell me it could be up to 11 weeks for a decision.
I wish I could get my health under control enough to work. I WANT to work. I dont want to be on benefits. GAH! But unfortunately, until I can stop being ill constantly, and in hospital so much, its not even an option.
I'm sure people just think I'm lazy. =/ I spent 21 weeks on IVs last year. Its not laziness. Its not a choice.
So why do I still feel so guilty? Lol.


14 April 2011

Glee - Get It Right

Get It Right - YouTube

I am completely in love with this song at the minute. I dont know why I just am.
Some of the lyrics are just amazing. Because everyone has times when they feel like this about something or someone.

♫ What can you do when your good isn't good enough?
When all that you touch tumbles down?
'Cause my best intentions keep making a mess of things
I just wanna fix it somehow
But how many it times will it take?
Oh, how many times will it take for me?
To get it right
To get it right ♫


13 April 2011

Random Chattyness

We reached the £300 target for our sponsored walk! I'm very happy right now!
And we're going to beat it! Because my parents, and mums work friends havent even sponsored me yet. As well as anyone else who decides to sponsor us!


Its amazing, and I'm so so grateful for every single penny that people have given the CF Trust because of us.

If you click here, you can read the post I wrote last month, explaining some of the reasons why I wanted to do this walk.

But basically, I want to do this, in memory and honour of all those people, who cant. All the special people, who have touched my heart, and made me a different person. People who were not much older than me, younger in some cases, who should have had their whole lives ahead of them still. And not just them either, but other people with CF, all over the country and the world, who were loved by their own family and friends.

I have lost a lot of friends to Cf over the last couple of years. Its been hard, and sometimes its easy to just feel like giving up. But I'm still here. And its no good giving up, when I could live my life the best I can, and try to make them proud. And to make sure they are remembered.

And I have a lot of friends who are waiting for transplants. Desperately waiting for that call that will change their lives.
Three beautiful ladies, Chantelle, Kirstie and Lisa, have all just been accepted onto the waiting list for new lungs in the last couple of weeks. Theres nothing I'd love more than to see them get those calls, and be able to do all the things that they cant right now.

This time last year Ellis would never been able to even think of doing this with us. Now, thanks to some truly amazing person, who we'll never know, she is able to. =) I will forever love the donor, who gave her another chance at life. I love my Ellis.

Yeahh, feel the love people. Lol.

I have a lot of love for a few of my friends at the minute. Because as well as Ellis and Danni who are doing this walk with me, some other friends have been plotting away behind the scenes. =)
With no prompting, or suggestions from me, they started planning a Charity night down the Pub. As well as several other individual fundraising sponsored things.
It means a lot to me that they care enough to even think about doing it, let alone actually going ahead with it!

Health-wise, I'm doing okay for now. My sinusitis is playing up, which means daily headaches, and keeping myself constantly dosed up on painkillers. I'm going to have to get referred back to Addenbrookes to get looked at. Which is annoying as my last Sinus surgery was only March last year, and I have a feeling they'll suggest the same route again. =/
But my lungs are okay.
I'm constantly tired, but thats not really new anymore, I am just easily exhausted these days.

I'm looking forward to the summer now.
Theres loads of birthdays coming up over the summer. Liz's wedding in a few months. Danni's 18th to look forward to. Lots of fun stuff. =)

Lovelove xx


Sinus pain.
Is crap.


Looks like I'll be getting myself referred back to ENT at Addenbrookes, just what I needed. =/

Oh well. Funtimes.


12 April 2011

30 Day Song Challenge

I finally reached Day 30! So heres a re-cap for those of you who've been paying any attention to my facebook! =)

Day 01 - your favorite song

Breakaway - Kelly Clarkson

Day 02 - your least favorite song

Telephone - Lady Gaga Or anything by Lady Gaga tbh.

Day 03 - a song that makes you happy

Freak Out - Avril Lavigne

Day 04 - a song that makes you sad

Please Remember - Leann Rimes

Day 05 - a song that reminds you of someone

I'll Stand By You - Girls Aloud My Mum.

Just A Day - Feeder Stiv.

Day 06 - a song that reminds you of somewhere

Cant Stop - RHCP Car, on the way to Prom.

Day 07 - a song that reminds you of a certain event

Teenagers - MCR My 16th Party.

Day 08 - a song that you know all the words to

Far Away - Nickelback

Day 09 - a song that you can dance to

5 6 7 8 - Steps

Day 10 - a song that makes you fall asleep

Yellow - Coldplay

Day 11 - a song from your favorite band

Science & Faith - The Script

Day 12 - a song from a band you hate

Baby - Justin Bieber

Day 13 - a song that is a guilty pleasure

Born to make you happy - Britney Spears

Day 14 - a song that no one would expect you to love

Word Up - Korn

Day 15 - a song that describes you

A Place In The World - Taylor Swift

Day 16 - a song that you used to love but now hate

Fight For This Love - Cheryl Cole

Day 17 - a song that you hear often on the radio

Someone Like You - Adele

Day 18 - a song that you wish you heard on the radio

If I Fall - Alice Martineau

Day 19 - a song from your favorite album

Push - Avril Lavigne

Day 20 - a song that you listen to when you’re angry

In the End - Linkin Park

Day 21 - a song that you listen to when you’re happy

Marry You - Bruno Mars

Day 22 - a song that you listen to when you’re sad

Starlight - Muse

Day 23 - a song that you want to play at your wedding

At The Beginning - Anastasia Soundtrack

Day 24 - a song that you want to play at your funeral

Keep Holding On - Avril Lavigne

Day 25 - a song that makes you laugh

Picture To Burn - Taylor Swift

Day 26 - a song that you can play on an instrument


Day 27 - a song that you wish you could play

Hanging By A Moment - Lifehouse

Day 28 - a song that makes you feel guilty

Breakeven - The Script

Day 29 - a song from your childhood

Girlfriend - Billie Piper

Day 30 - your favorite song at this time last year

Fireflies - Owl City

10 April 2011

Sunny Days = Ice Cream

Soooo! Its been a good few days!

I saw Sammi on thursday! Which was awesome. I havent seen her properly in years. Definately missed her, and need to see her more. =) And Emma is home for Easter now too, so hopefully I'll see her soon.

The weather has been amazing! Had several days of sunshine, and 20 degree heat! I've even managed to catch the sun, slightly! Yesterday we headed up to Stockwood Park, to go for a walk. And then today we decided to go to Ashridge for a picnic when Ryan finished work. Lots of sunshine, lots of walking, and LOTS of ICE CREAM! =) YAY!

I took loads of pictures in amongst the trees. I definately need to get myself a decent camera, because I love taking pictures. And the 2 megapixels on my phone camera are not cutting it! Haha.

Health wise, I'm doing great! Which makes a nice change. Had a fairly nasty bleed thursday afternoon, but it seems to have been a one off, and after a nap I felt fine again. So its all good I think, for now. =)


6 April 2011

Get in mah Belly.

Dont ask about the title. I dont even know. Michelle mentioned Austin Powers, and thats all I can think now...

Sooo, now I'm not overdosing on Septrin, I'm picking up nicely. Feeling much more like myself, which is good, cos sunday and monday were scary.

Went up to clinic today so they could take my blood... SEVEN attempts later. Not impressed. But to her credit, the poor nurse kept on apologising. I was upset, but I do know its my veins, and not her at fault, so I kept telling her not to worry.

Bloody hurt though.

Had a crap night last night. Some personal friend issues which are far too complicated and pathetic to bother explaining, but yeah, woke up feeling pissed off with the world. And then the sun came out.

Somehow, the sunshine has this sort of magical way of just making everything seem better. So who cares if one person is being an idiot, I have plenty of other people who I love, who deserve my time. I will be happy and enjoy my life, for them. Screw everyone else. =)

Well, I'll try. Lol. Its not always simple, but I can try.

Went and saw Mel today too. Not seen her and Scarlett much since I split with Matt. I guess I was worried that friendship would be awkward, seeing as it was only really started because of him. But it was fine, so I shouldnt have worried. =)

And seeing Sammi tomorrow! Not seen her in years! Literally! Lol. So that should be awesome! And Pub tomorrow night I think. I wont be drinking because I'm playing nice with my liver for a bit... But some giggles and sugary coke, and who needs alcohol? Hehe.

Finally, the lovely Kirstie Mills got to meet Russell Howard yesterday! Or 'Russ' as she likes to call him now... ;) Lucky girl. Hehe. You can read all about it on her blog.



5 April 2011

Overdosing... Oops.

Sooo. I'm an idiot.

For the last 5 days, I've been overdosing myself on Septrin.

When I'm in Papworth, or I've had a prescription from there, I have to take 2 480mg tablets. But my chemist at home supplies me with 960mg tablets.

Now I KNOW this. My chemist has ALWAYS given me the same version. But for some reason. Since I came home wednesday night, I've been taking 2 960mg tablets, at each dose. Habit I think.

I only discovered this today.

My chest was really tight, and my breathing is pretty rubbish. My resp rate and pulse have been stupidly high. And I've been having really bad headaches, which I had assumed was my sinuses, which had confused me anyway, cos my sinuses normally improve with IVs... But this makes sense now! Lol. And I'd just felt generally rough today. I was shaking and shivering constantly, had no energy and I was scaring myself a little.

I actually text Matt, to see if among his medical contacts, he had someone who would know what the best thing to do was. We're getting on okay-ish recently and we're back on speaking terms, and I hate on-call doctors. With a passion. But between texting him, and him ringing me back, I totally panicked at just how bad I felt. And everything always feels worse and more significant when you actually KNOW there is a problem. So I rang Papworth, and put up with the fact I'd have to deal with some on-call dr. (Because naturally this had to happen after the 9-5 CF nurse hours. GRR!)

So anyway, I rang Papworth to inform them of my stupidity, and ask their advice, and theyve said to stop it completely, and come in for clinic on wednesday. Need to have blood tests done now to check if I've done any damage to my liver, because thats already temperamental.

At least I now know WHY I felt so bad. And hopefully I can start to improve now.

I still feel pretty crap, but I'm hoping it'll slowly ease up.

I amaze myself with how thick I am at times. I mean, with the amount of drugs I'm on, I was bound to mess up one day. But 5 days in a row is kinda extreme... Certainly wont be making this mistake again.

And yeah... Let the mocking commence.


2 April 2011


Random Picture Update.


My Morning and Evening Pill collection... Except Domperidone. Which I have somehow run out of. Ooops.

And me. Posing. Cos I could. =) Lol.


72 hours.

72 hours...

Thats now long I've been at home.

3 days. Or 72 hours.

And already I am exhausted. I've done nothing major. I went into town thursday yes, but only to pick up a mothers day card, and a birthday card. Not to do anything majorly exciting and energetic. And I went to the pub. But thats all, I wasnt clubbing, I didnt dance. I just sat, and chatted and giggled.

I'm 20 years old. I should be able to handle that, yeah?

But my body has other ideas.

I'm wheezing. My lungs are bubbling and crackling when I breath. Last night I had a bleed. Not a massive one, but still not ideal. When I laugh, I end up having a coughing fit. When I cough it hurts my chest. My sinuses are playing up too, so I've had a constant headache, and every cough hurts my head too.

My joints are playing up. Particularly my fingers. They are temporarily okay right now, because I'm dosed up on diclofenac, but when I'm not drugged up on painkillers, I cant type, or text properly, or even hold and manage a fork properly, without it hurting.

And this is 3 days out of the hospital. This is when I should be feeling my best!

I'm trying desperately to convince my parents I'm okay. I hate them fussing and worrying. Mum knows something isnt right, she just doesnt realise quite how 'not right' things are. I dont want to ring the hospital yet. I want to be at home, I want long enough to actually enjoy being home.

Today, CF wins. Because I dont have the energy to fight. Maybe tomorrow will be better, maybe tomorrow I'll win. Maybe it will be worse. Who knows.

This is my life right now. And sometimes, it sucks tbh.


1 April 2011

Home stuff

Home is good. =)

I have completely exhausted myself, already.

Went into town yesterday, to see Liz and pick up a couple of cards. Which meant walking to the train station, (15 minutes, and a hill) walking round town, then walking back from the station.

Then I went to the pub. And overdid it a tiny bit.

So yeah, suffering today. I need to learn to slow down a little I think. I do like to do everything at once. Lol.

But I got to see Liz and Evie. And look in a wedding dress shop. (PRETTY!) And get dirty looks for pushing a push chair around. Apparently I dont look old enough to have a 9 month old baby. Haha.

And I drove Ryans car yesterday! Haha. Only to the end of the road. And only at about 3mph. LOL! But I drove. It was scary. But awesome at the same time. I've never really had any desire to drive. Its always just been something that I figured I'd do eventually. But now, after a couple of minutes in a car, I am desperate to start driving!! =)

I sent off my DLA and ESA forms today. The social worker sorted them out for me. So in a few weeks I should know what I am entitled to, and hopefully I'll be a little less reliant on my parents for every little thing. The social worker couldnt believe I'd only been claiming lowest rate care DLA until now. Hopefully the DLA people will agree with him. Haha.

Lovelove xx