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