22 July 2011

Totweek and Stuff =)

Hey guys!!

So, I had an amazing time while I was away!
I made it all the way to Darlington without any trouble on the trains, which is basically a miracle in itself. =P
And somehow I resisted the urge to go to Hogwarts...

And I reminded myself of just how gorgeous St Pancras Station is. It is such an amazing building.

And I loved every second while I was there. Everyone made me feel so welcome, and I cant wait to go back!!

Got my sinus operation booked for the 15th September now. I'll give myself a couple of weeks to recover from that, and then I think I'll be heading back to go see everyone. I cant wait!

Off out tomorrow night, to a BBQ/Party for Clives birthday. Will be strange because I havent spent any real time with that family for a long time. Me and Ryan grew up with Paula and Clives children.

Then next weekend is Liz's hen night! And the following weekend is her wedding!! EEEEEEEP! So excited for her. =)


12 July 2011

Catch Up


So yeah, I'm still here! I've just been really quiet for a few weeks.
Basically, because I've just had complete writers block, and nothing worth writing about.

I was only in hospital a couple of days after my last post, and then the doctors sent me home because the drugs werent making me better, and were just making me sick.
Shortest admission ever.

I had clinic at Addenbrookes about my sinuses, (FINALLY) and the Consultant, (Same one I saw last year!) thinks I will probably need another operation. We're just waiting on a CT scan, to confirm what he thinks.
So I have a CT scan booked for the 20th, and then clinic again on the 21st. Wow, thats a fun couple of days. Lol.

Its nearly time to go up north!! SO EXCITED. Just 2 more sleeps now and then off to see Michael and Clairey!!
Will be leaving Leagrave about half ten on thursday. Not long now!! I'm pretty much packed, just the last minute stuff left, like chargers.
Good job really, because half my case it taken up by bloody birthday presents!! 8-)

Anyway, I daresay I'll have loads to tell you when I get home next tuesday. And then theres lots of stuff coming up, so I should be back a bit more. Birthdays, Lizs hen night, Lunches with friends, lots of exciting fun stuff!!

Love you all.

28 June 2011

Sneak Tot Attack!

I'm back in Papworth. Today was day 4.

Fun times.
On Imipenem and Septrin. And wow, that combination has somehow majorly upset my reflux. I cant eat anything without wanting to be sick. Its not pleasant, and it hurts. A lot. =(

Which meant, I was all mopey and sulky because I had to miss Danni's party on saturday night, and I couldnt go to London to see Michael and Claire yesterday.
I did miss Danni's party... I was NOT expecting Stiv and Claire to turn up in my doorway yesterday afternoon though!!!!!!!
And they had orange lucozade, which is always good. Hehe.
(Trying to make the change from calling Michael, Stiv. Because I prefer Michael, tbh. But its habit to call him Stiv. Plus people would have no idea who Michael is... Lol.)

I was soooo happy. If was so good to finally just hug them! And now I'm even more excited to go and stay with them. 2 and a half weeks to go! =)

My signal here is even worse than it usually is, and its been driving me crazy! I do seem to finally have found a spot which at least allows me to get texts when they are sent, rather than 3 hours later. So thats an improvement! And it means I can actually talk to Gavin again now. (Poor Gav.)

Anyway, yeah, in hospital. Far too much time to think.

I've been particularly lonely this admission. I dont know people on the ward, which is unusual for me. I feel rough, and I dont always know who to turn to.
Its times like this I miss having a boyfriend, just because it didnt matter what time it was, if I needed someone to talk to, I'd just call. I didnt feel guilty if I woke him up.

Its silly really. But when you're throwing up at like 3am, or in agony and cant sleep, its nice to have someone to go to. =(


21 June 2011

Tot Birthday!!

Happy Birthday Stiv/Tot/Michael!!!!


Giant Epic Uber Hugs.


19 June 2011

Cough, Cough, BLOODY COUGH.

If they made coughing, a sport... I'd be in there!!

SO fed up today. Cant even catch my breath properly just laid on my bed, because I cant stop coughing long enough.
And I'm bloody exhausted, even though I'm napping loads. Because I'm not getting any proper sleep. Its always just an hour here and there. =/

So back to Clinic this week I guess.

I have plans thursday night, saturday night AND sunday. Which even if I still manage all of, will probably be ruined by coughing, exhaustion and IVs.

CF Sucks. It ruins EVERYTHING.

17 June 2011

I Hate Stairs.

Rawr! =)

Feeling slightly better than a few days ago, which is always good. Still not right though. My lungs hate me at the minute, I am CONSTANTLY breathless, on the most tiny and minimal effort. And then it takes me ages to get my breathing back under control. =/
Was getting home from town yesterday... 3 flights of stairs to get up to the train station... And then another flight of stairs when I got back to Leagrave. Its only a 4 minute train ride, I hadnt even recovered from the first lot!! I NEED TO DRIVE!

The stairs at home arent really fun either.
Its funny, because if I'm distracted, or excited, or hyper, I forget myself and try to run up the stairs at home.
It lasts about 4 steps.
I sort of crawl up the rest...

But oh well. We'll get there. I have far too much to look forward to, to let this get me down.

I escaped Clinic without IVs on wednesday... WIN! My lung functions were fairly stable at 41%, but I was wheezing a bit and feeling tight chested, so we decided to try some steriods and see how it goes. Doctor didnt seem to think my problems were infection based, and I agree, so home IVs seemed a bit of a waste of energy.
Got to go back on the 29th. To check I'm well enough before going up north. =)

Got to see Gavin after Clinic too. (More WIN! Lol.) I dragged him round town shopping for birthday presents. He survived the Disney store... AND Early Learning Centre! I'm quite proud to be honest.
He has this obsession that I am like Pam, from The Office US. Personally I have never watched it, so I have no idea if this is a good thing or not, lol. But he thinks I should do my hair like her now.
She actually has amazing hair, I would LOVE hair like hers. Might try it sometime, just to keep him happy.

Want to get this weekend out the way now.... Looking forward to next week. Got the Charity night down the pub on Thursday, and then Danni's Party on Saturday, and off to London to see Stiv and Claire on Sunday.
Gonna be exhausted by Monday, but it will be soooo worth it. <3
Will get lotsss of pictures too. Need to add to the collage on my wall. =)

Some of you will know, that the very beautiful, and amazing Kirstie Mills got married yesterday. She is now Mrs Kirstie Tancock.
She looked absolutely perfect, just like a princess. I wish her and Stu all the happiness in the world, and hope that she gets that call for new lungs very soon.


13 June 2011

Poorly, Whingey, Puppyish Tot.

I has GERMS!

Mum was off work during the week with some nasty virus. There were a few people she works with that had the same thing. I tried to look after her, from a distance. Then Dad got it. Then I gave up hope. I knew it was gonna come and attack me.
And it has.

Definitely not feeling too good. I've not been quite right anyway, I think if I'm honest I shouldve stayed in hospital a little longer last time. But I left as soon as I felt better so I didnt have to stay for the bank holiday. Its my own fault.
Now I have the added joy of constant headache, (Thats normal thanks to my sinuses, but I have pains in new parts of my head now) sore throat, stinging nose, constant sleeping, lack of appetite, and general crappiness. Plus its already hitting my chest. Coughing, wheezing, and general achey lung feeling.
Oh keep losing my voice too. <_<
Not fun.
Not funny either. Even if Gavin found it funny on friday.

On the plus side, my weight has been bothering me for a while, not helped by a little brother who likes to tell me I'm fat and/or ugly. Even if hes 'joking' like he claims, its still hitting my insecurities hard.
So the lack of appetite thing. Not bothering me so much.
Will have to be careful though. I have no problems with my weight, which is lucky as a CF patient. BUT when I do stop eating properly, it does just tend to drop. I dropped a stone after I broke up with Matt, in a couple of weeks. Gained it again over the next few months, but the hospital arent happy when it drops like that. They send the dietician to drive me insane.
I've lost 5 pound in the last week, what with reflux problems and being ill affecting my eating patterns. =/

So, I'm all moany and whiney at the minute. But I have no voice, so I am mainly just whiney. Like the noises a puppy makes when its sad. Lol.
Stiv referred to me as Puppyish, in his blog, last week. I think its appropriate to be honest. When I'm sad or ill, I get all whiney, and mopey, and just want to be cuddled. Lol. So now Puppyish is my favourite term.
Although, must remember that most sane people will not understand that. Lol. Do not use Puppyish to describe feelings to the Doctor...

Oh well. I have Clinic wednesday. I think.
(Must remember to ring Papworth tomorrow and check... Lol!)
Probably gonna mean IVs time again. I dont have any fall back oral antibiotics. Because I'm on Septrin permanently, and Cipro makes me ill. Migraines and vomiting, for the Oral or IV version. Nice. =/
But I need to be well enough to see Stiv. So I shall get over it.

Oh well. Enough moaning for now I guess.

2 weeks til Totday!
4 and a half til Totweek.

Excited to meet everyone. Mainly, of course, TOT! But his friends too. Maybe speak to them when they arent drunk. Hehe.
Just hope they all like me. =|


11 June 2011

Wristband =(

I was sat in the car today, being all thinky.
(Gavs fault for his silly music. Lol.)

A couple of weeks ago, the day I was discharged from Papworth actually, I broke my CF wristband.
Now those of you that know me very well, will know that I'd had that FOREVER. I got it years and years ago. And it was after Shahara passed away that I decided I was going to wear it all the time, to remind me of her and the reasons I need to make the best of every day.
And I pretty much have worn it all time time. On the rare occasions I've taken it off, its gone into a pocket and straight back on. When I went for surgery, Mum looked after it until I was awake enough to ask for it back.
As time went on, I lost other friends to CF, and it represented them all, but most of all Shahara. She was the first person with CF I 'knew' in person.

She was very poorly and we couldnt mix as she grew Cepacia and was in isolation, even back in the childrens ward days of no strict cross infection control.
She was also about 5 years younger than me. But we still used to write each other little notes, and get the nurses to run them back and forth. She drew me pictures, made cards, even made me a 'necklace'. She was lovely. She also had amazing handwriting considering she was about ten at the time.
When she passed away it hit me hard, because she was just so young. I was only 15 or 16 at the time. I was only just coming to understand CF properly, if I'm honest.

But yes. So I was very upset, when my wristband finally gave up. I meant so much to me. Silly, I know, but I did have a few little tears. =/
I'd only taken it off, so I could wash my hands and arms properly, because I'd got Imipenem on myself while I did my IVs. And it smells HORRIBLE! It had a slight tear in it already, and it just gave up and 'Ping'. Meh. =/
Both Dad, and Stiv, went out and ordered me new ones. Which turned up the same morning. I'm wearing both at the minute. And I love them loads. But, its just not the same somehow.

Also, saw Gavin today. =) We were sat in Luton, and he asked if we had an Apple Store, which we dont.
Then we started talking about how Milton Keynes is so much better because it has a LEGO STORE.
And then, we decided to just randomly go to Milton Keynes to look round the Lego Store and the Apple Store. Haha. Because we're cool.
I loved the Lego Store. I was so tempted to buy Stiv Lego for his birthday, so I can play with it when I go up north. <3 LOL!
Also, I was totally in TWO shopping centres today and never stepped in a New Look OR a Disney Store... Must be ill tbh!


9 June 2011

Tots, Sinuses, and Other stuffs.

Well! I'm much happier now.
I have heard from my Tot.
He had to have surgery today. Only sinus surgery, so not the most major thing in the world. He'd had it before. I've had it before. I knew it'd be fine. But I still worried constantly for those few hours.

I hate being helpless. Hes my best friend in the world, and I didnt like not being able to make him feel better.
It was very backwards. I'm supposed to be in hospital, and hes supposed to be at home. Thats how our relationship works! 8-)

Ironically, I got MY ENT appointment through this morning. So I'll be seeing the consultant at Addenbrookes on the 30th March, at 11.45. FINALLY.
I dont really care what they say, I'll just be glad if they can stop this constant pain, because its driving me crazy, and I cant stand it much more.

I was sat today, trying to work out what to get people for Birthdays. Got loads coming up in the next couple of months.
Pete, Stiv, Evie, and Danni are all this month.
And then Clairey, Pete, Liz, Emma, Sam, Ellis are all next month. Theres some others too I think... =/
I dont bloody know what to buy people!!
Was worrying about fathers day too. Until Ryan reminded me that I've already given him money for Dads present. Which I had totally forgotten!! Ryan couldve got away with that one... Silly boy! Hehe!

Only 5 weeks til I go to stay with Stiv and Claire now! And 2 and a half til I see them in London. Eeeeeeeeeeeeeeeeeeeeeeeeeep! <3

Epic hearts! =)

Love xx

6 June 2011

Random Stuffness.

Sooo, whats happened since wednesday?

My train tickets arrivedd!!! Eeeeeeeeeeeep! The very next morning, which was pretty damn impressive tbh.
Sooooo excited now. The next 5 and a half weeks are going to be sooooo slow!
I'm going to see a TOT!
He will be sooooo sick of me after being stuck with me for 5 whole nights. I'll probably be kicked out by the friday night. Haha.
Or the first time I start singing reealllyyy badly to myself.
Also, I hope he has stocked up on Orange Lucozade before I get there... Hehe.
Tot Tot Tot Tot Tot!
This is like 3 years of excitement, all squished into a few weeks! =)
And to think I was so excited about going to London for the Day! I keep forgetting about that part now! Haha.

Anyway, we went off the Southend thursday. The weather was absolutely gorgeous! Although, we were sat eating some chips on the seafront, and there was this HUGE gust of wind, and it blew chips everywhere, and a full can of coke straight into ryans lap! Which, naturally, I found HILARIOUS.
I'm such a mean sister. Lol.
I took lots of pictures with my new camera. I LOVE my camera.
Anddddd I SAW A PETEY!
Well, he saw me... I managed to walk straight past him. Even though I was looking for him. Clearly I'm very observant. =/

Saturday I saw Gavin. =) We went up to Ashridge, and it was sooo pretty. Was a little concerned that we'd end up getting lost on the way, like when we followed Ryans Sat Nav... And my sense of direction would be no help to anyone. But Gavins sat nav is clearly better cos we got there fine. Lol
Wandered through the trees and found this random little house/hut/shack/shed... I would imagine it belonged to whoever looked after the grounds at one point, but now its just something for kids to write all over. Haha.
So theres me, sat on the little deck, watching Gavin wander around aimlessly, then hes just all, 'I wonder how many people have been killed here...' Haha! Totally scares me at times. ;)

Then yesterday me and the family were GOING to go for a picnic... But it rained. So we just had our picnic in the car, cos we're cool like that. =)

It was fine by me, cos I feel pretty rough the last couple of days. All I want to do is sleep. =/ Meh.

I think I was awake for about 8 hours yesterday... Out of the whole day... Thats not right!! Lol.

Ah well.

Love Love xx

2 June 2011

Tot Times!

My train tickets are booked!!

I will be leaving Luton just after 11am and arriving in Darlington around 3pm ish, on the 14th July, and leaving Darlington again about half past 3 on the 19th!!

Excited MUCH!!

I bought a new camera today! Its not the most amazing latest thing ever... But I think its amazing. 14 megapixals... 5x Optical zoom... HD Video... Optical Image Stabalisation.
Its more than good enough for what I use it for.

So now I can take many pictures of all my exciting summer stuff.

Speaking of which... SOUTHEND tomorrow! YAY!
Do love the seaside.

Anything this was just a mini blog, to share my excitement about Trains being booked.

Night night xx

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

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