Friday, 31 December 2010

New year, new lungs?

Just a quick blog tonight cause I have to go start getting ready to party and bring in the new year!


Well 2010 has without a doubt been my worst year so far. My health became dramatically worse and my quality of life completely changed. Right from the first week in January it's been a bit of a rough ride. Getting pneumonia, needing o2 24/7, being diagnosed with diabetes, getting to the stage in my life where I need a transplant, the transplant assessment, having to start overnight feeding, a few really bad infections, being started on NIV overnight. It's just been one problem after another.


But all these rough times have made me look at life in a totally different light. Made me appreciate that I've made it to 2011 and still in good enough shape to celebrate it like every other 18 year old would. With plenty of booze and a good party! I realise things could be a whole lot worse and I'm so thankful I've had the medical care thats kept me going. Not forgetting my mum and all my friends (the ones who have stuck by me the whole way, the new ones I've made and even the ones who I might have lost along the way) and the guy who really kept me going up until the last few months. Things might have ended badly but I still remember that things were good, he was a huge part of my life for a year and he was literally my rock through the life changing times I went through at the start and middle of the year. I couldn't have asked any more of him at that time.


So with some old friends and some new I'm running (well maybe not running. Might get a bit breathless ha!) head first into 2011 and hope that this year brings more luck on the health front and that I'll be here this time next year with a different story to tell. Maybe even with some shiny new lungs! Then I really can go running into the new year!! :D


I hope everyone out there has a great night and makes 2011 everything they want it to be. Remember it's your life, you might not be able to control everything that life throws at you but you can try to take a different outlook on things and stay optimistic no matter what happens. Use the negative things to make you stronger for next time round and use the positive things to keep you battling on through the bumpy bits! You only get one chance at it so don't waste it!


LETS GO GET ON IT!! :D

Thursday, 23 December 2010

Tis' the season to get sexy

Everything's just peachy at the moment! So I don't have too may complaints (for a change).


First thing's first. I'M GOING HOME TOMORROW!! :D Just in time for Christmas, New Year and the party season. Loads of yummy food - which I'm in dire need of right now but I'll come back to that -, the telly's good which means plenty of cosy nights in, and last but not least lots of parties!! Looking forward to getting glammed up after sitting in my pjs with greasy hair for over a month. Sexy eh?


Christmas is in 2 days. Now, I'm not really a fan of Christmas. Never have been. But I'd be lying if I said I wasn't looking forward to my dinner. I actually cant stop thinking about it! Yum yum yum... it'll seem so much better because I've been living on hospital food for so long. But the food (if you can call it that) they give you on the NHS could make most things seem like something from Jamie Olivers' kitchen in comparison!


I'm panicing slightly.... I get discharged tomorrow afternoon so because I have absolutely no presents in for anyone (not even cards or wrapping paper!), my Mum's coming with me to battle through the hell that is Braehead before it closes at 5pm. I mean, luckily I've actually ordered most of the stuff already online so it's just a matter of picking it up from the stores plus jump into a couple of other shops enroute. So everyone's saying the place is insane but BRING IT ON!!


Well I'm not really sure what else to write except that I'm a happy wee Loulou despite the drama of the past month and I honestly think it has something to do with getting rid of a certain someone from my life. Everything might not be perfect but lets face it, will it ever be? I do know that everything in my life is easier to deal with and stay positive about even if it's really pants! Even being in hospital doesn't bother me any more. Sure, I would love to be at home or out doing what all my mates are doing but ward 6C feels like home just as much as my own wee house does. I see and talk to the nurses more often than most of my mates/family and if I were in here say 2 years ago, I would have been going absolutely mental if I never got out for a while after 2 days. Whereas now I can go 2 whole weeks without as much as stepping outside the building and I'll be quite happy. This place really is my second home and all the nurses are like a massive family (sorry for the cringe factor but I cant think of another way to put it!)


Hope you all have a really amazing weekend however you spend it and fabby new year (if you remember it the next morning).
See all you lovelies in 2011 ;) lets grab it by the balls!

Wednesday, 15 December 2010

Scary times!

Well hey there. Thought I better update this to fill people in over the past 4/5 days (as best as I can remember which might not make much sense but I'll give it a go anyway!).
I was in Garters for a couple of weeks just for some IV's, nothing serious just had a bit of a cough and things but all was well when I got out. So I was discharged on the Wednesday and was absolutely fine till Saturday when I got really short of breath but decided just to chill out, do some extra physio and hope I'd be better in the morning. Obviously never worked though! I was only sleeping for about 2 hours before I woke up in total agony. Honestly thought I'd collapsed my lung!!

So off in the ambulance I went with the big blue flashy lights down to A+E in the RAH. Now everything's a bit hazy from then on due to mass amounts of morphene injections I was being given and my Co2 levels were seriously high so that totally messed up my head too.

I honestly don't remember what order things happened in or what happened on what days but I was moved to high dependancy for a couple of days until I was stable enough for them to transfer me over to Gartnavel. Totally bed bound until today (god was I glad to sit on a normal toilet!) due to all the machines, oxygen, NIV (Non-Invasive Ventilation) machines, venfolins, morphene access and whatever else they had invading my personal space! Not to mention all the morphene I was getting heehee! My mum told me my eyes were rolling back into my head and talking nonsence and god knows what else! None of this I can remember very well right enough.

But everyone gave me a good update on whats been going on today now I'm feeling much better. Even managed a shower and a wee wander round my room! Oh and I can get to the loo on my own too :D my dignity how I've missed you!! So everything is definitely on the right track!

I can make a joke about it all now but I really don't think anyone was laughing a few days ago. It's all a bit scary when you think how suddenly it all happened and just how unwell I was. It really hit home when they were wanting to move me to Intensive Care and just sedate me so they could ventilate me for a couple of days. Makes me so thankful to live in a country where the health care is so good and free! All the nurses have been amazing both in high dependancy and my usual nurses/doctors/physios etc up here in Gartnavel. I think lucky is an understatement! 

A big thanks to my Mum who's been at my bedside every single day (even at 3 in the morning in A+E). Kirstie who was there to meet me coming out the ambulance at Garters, rubbing my back and held my sickbowl while I chucked up my guts (yummy!) and has been up watching over me for hours on end every day.
And to Chris who jumped straight up to see me in high dependancy and held my hand because I was so scared and just needed someone to hold onto and make me feel safe again.
I'd never have done it without these people and everyone who's been phoning my mum and facebooking me! Definitely gives you something to keep strong for! Actually can't say thankyou enough.

You can now get in contact with me over facey or give me a text and I'll reply (making sense this time). Apologies for all the texts that have been ignored over the past few days! But I promise I'm not talking like a scary junkie anymore :)

Much love xx

Friday, 5 November 2010

Can't sleep

Isn't it funny sometimes when you know so many people but still feel totally alone?

That you find yourself wondering who will catch you and pick you back up, and that even the closest people in your life still feel too far away?

Or when you try asking for a little help, just to see if it works, no one can think of what to say to put that smile back on your face?



It goes through my head all the time. Everyone always says that phrase that's thrown around so thoughtlessly - "I'm here if you need me". But when you need them their not there.



I've been feeling rubbish all night. On IV's again, although that doesn't really bother me as such since I'm at home doing them. I'm just feeling fed up. Everyone gets that right? Maybe it's the crappy weather, or the fact I've been stuck indoors since the weekend. But the most stupid thing set me off and I've felt pretty pants ever since. All over my stupid oxygen.
I made plans to go out with my mate Chris to the cinema but when I was about to swap over to my portable oxygen to leave the house, it wasn't working. Then by the time I got it working, the film had already started. So it was another night alone in the house.

I just get so angry and jealous over these tubes. Why can't I just be like everyone else and be allowed to leave the house on a whim without having to plan it hours before so I can fill up this daft contraption to help me breathe?



I never really know what to do when I get upset. Because it's not very often it happens.
I could try talking to my mum, but she just stares at me and doesn't reply. I could try asking my boyfriend to come and see me or talk to me for a while, but he's out with his mates and says he'll talk to me later but I don't hear from him again. Or I could talk to a friend, but no one ever knows what to say.

I don't want to hear "aww thats a shame, chin up you'll feel better soon" or "I don't know what to say to that" or those who just conveniently say they have to go.

What do I want?
I just want someone to listen to me rant every once in a while.
To cuddle me when I feel like crying.
To turn up at my door with an arm full of DVD's and comfort food.
To tell me something funny that happened in their day to make me laugh again.
To just be there. When I need them.

Am I asking for too much?

Sunday, 24 October 2010

And I'm feeling good...

Afternoon!


Well I'm feeling like a happy wee chappy just now. Despite being a bit chesty everything else is going quite well.
Patched things up with Dean last week so he came over last night for some chinese and a wee cosy night in with a few drinks. Although we did fall asleep at 11pm totally sober, but despite that it was nice to spend some proper time with him. And obviously waking up and getting a cuddle this morning is always good! He still gives me butterflies! Feel like a daft wee girl getting excited over such things but life would be boring if I never.


I've got loads planned for the next week: Whats the Damage?! are playing a charity gig to raise money for Erskine hospital tonight, going to scare the living daylights out of myself at Paranormal Activity followed by dinner at TGI's for Chris's 20th, then it's Halloween on Sunday!!


Always loved Halloween. It's so much better than Christmas in my opinion. I love dressing up and seeing other people's costumes, laughing at guys wearing their girlfriends clothes, watching scary films, eating loads of rubbish, so many parties and nights out. Sadly due to the time scale I had to get my costume together it's not going to be great. Had to settle for Betty Boop. So fingers crossed it pulls together and everything arrives in the post on time! Still to decide what I'm actually doing right enough... Town? Gig? Hall party? House party? Throw a party myself? Decsions, decisions!!


So everythings going well just now. Have a feeling I'll have to give up and go in for IV's after Halloween but with a bit of luck I'll get to do them at home and I'll be feeling fabby after that!


Roll on this week!!

Saturday, 23 October 2010

Updates

Hey all. I really need to start updating this more regularly! I always think of things I'd like to post about but then when I dont have the time to write about it, I forget about it. Then it comes to times like now when I'm about to write something and I can't choose what to talk about! Oh the dilemma!


So I'm still out the hospital and still well and still really busy out and about doing things. I've been out nearly 3 months now and even managed my 2nd port flush! Which is a new record for me! I can feel myself getting a bit chesty now but I'm determined to make it past Halloween. I wanna party!!

Well anyway. So recently I've been thinking, what with everyone started uni and college, its made me want to do something with my life. Right now. Not wait till after transplant. Cause who knows how long that'll be or if it'll even happen. Problem is, that I wouldn't manage to hold down a course or job because I'd just struggle so much from having constant time off.
Then I had a brainwave; why don't I learn a new language?! I was always hopeless at french in school because I missed too much of the basics at the beginning and never had the help to catch up. But if I were to buy one of those help teaching CD's then I could learn it at my own pace and whatever language I wanted.

France is never a country I've wanted to go back to or could see myself travelling so I was thinking Spanish is more realistic? I think it's a nice sounding language. Very sexy! Ha! Maybe even charm a nice Spanish boy...

So anyway if I have the money when I get paid then I'm going to order a language pack, get my finger out and make something of the life I've got. Or maybe I'll sweet talk mummy into buying it :)

Anyone got any more ideas of what productive things I could do to fill my time? Bearing in mind I'm pretty lazy and have always needed someone standing behind me pushing me on with things. Or possibly someone to stand over me and tell me to keep going?

All suggestions and offers welcome!

Wednesday, 6 October 2010

New ink

Afternoon! So yeah I've realised at the end of my last post I told everyone I had a surprise and that was over 2 weeks ago now. Pretty much everyone knows I've got a new tattoo now but I might as well post a bit of explanation behind why I got it and such.


I was wanting to do something to mark the start of my 'new life' as such which hopefully this transplant will give me. But after speaking to the transplant team down in Newcastle they told me they don't advise getting tattoos and piercings post tx - hence why I got it now and so suddenly.


So it's of a big phoenix with a scroll flowing round it with the word 'breathe' on it. The meaning behind it all is pretty obviously but to those who don't know what a phoenix symbolises (or even what it is) here it is. A phoenix is a pretty amazing looking mythical bird which symbolises 'rebirth' and 'new life'. If you've ever seen or read Harry Potter then you'll have seen one there. Their really beautiful things to get as a tattoo. So much can be done with them in terms of size, colour and detail.


Well that's where it came about :) It's totally healed now and it's looking fabby! I love it to bits! 


Here's a photo of it!

Thursday, 16 September 2010

Recent happenings

Hiya everyone :)


Been meaning to update this all week but I've either been too busy or too tired after being busy. Well anyway, I'm doing really well (for a change) and I've had a really good month. Which obviously gives me something to push myself along with and focus on. Everything's pretty damn fabby right now actually!

Why is it so good you ask?
Well basically I've just felt so much healthier and had so much more energy. I don't have a clue where all this energy has come from (someone sprinkling magic fairy dust on me maybe?). Realistically it's probably just looking after myself that's paying off, but I can't help but wonder if it's actually mental more than physical?

Me and Dean broke up a few weeks ago as you all know and while I was with him, most of the time I found I honestly had no energy to do anything. Getting up and ready was a task in its own never mind actually going out and doing things. Meaning most of the time we spent it sitting in bed watching the telly and DVD's. But after a few days of sitting in the house on my own I forced myself up and out with some mates to give me something to take my mind off things. Ever since then I've been out nearly every day; doing things with mates, nights out, parties or even just generally doing more around the house. I've even recently managed to start drinking again without it making me feel horrible after like two vodkas! Things like walking are getting easier and I'm not getting headaches every day. Things that I thought would never happen until after my transplant.

So maybe it was really in my head? Yes I still need my oxygen all the time and no I'm not running marathons (yet). A lot of the time yeah I was really unwell and couldn't do anything. But maybe sometimes I was just assuming I couldn't do these things? That my partying days were over and that sick girls on oxygen couldn't go get pissed on a night out in Glasgow? Would I really have managed to get up and do these things if I knew I couldn't just go home and snuggle into my boy with a cup of tea and a film instead? I honestly don't know.

Another possibility is that I've been going to the gym at the hospital every week so I know I'm definitely building up my fitness levels. But that should only help me walk longer distances and such.

Maybe it's a bit of both?

All I know is, I've learned that I'm still Louise. Not sick Louise. And that I am just as capable of living life as any other 18 year old girl. Maybe even do more with my life than some folk who are fully capable with no tubes! I've felt on top of the world recently cause I've experienced things I was starting to forget what they felt like. And emotions that were left back last year before I got pneumonia. 

I'm still me!

So one lesson I'll remember is that if I ever do go back with Dean or if I eventually meet someone else before tx, although nights in are still nice, I know I can say yes to a night out too.

Life is what you make it :)



Also, I have a surprise next week that I'll post about later on in the week!

Saturday, 4 September 2010

Officially listed!!

Hiya everyone. Sorry I've not posted in a bit, loads of stuff has happened since my last entry. Yet not much of it I feel is worth posting about or I just don't know how to put it into words. So this is just a quick update.


I got the letter through this morning to say I'm officially on the active list. Which means from now on I could get the call at any time - day or night. I get quite frustrated when people ask about it and they always say 'so when are you getting your transplant?'. And quite often even if I try to explain it best I can, some just don't understand. So I'll have a go at putting it as simply as possible :) And let me know if there's anything you still don't get.
What happens is that when your on the list, it's not about 'first-come-first-serve', it all depends on what organs become available and whoever is a match (blood type, tissue type and even height) and needs them most at that time. No one knows when they'll get their transplant (weather its lung, kidney, heart, liver etc) because it all depends on who dies unfortunately. So when will I get my transplant? I don't have a clue. And I wont know until they have the lungs available, which is when I'll get a call and will be rushed down to Newcastle by ambulance or helicopter (woohoo!). It could be tomorrow, it could be 2 years from now.
Also I'll probably have a few false alarms where I'll get called down to Newcastle and find out that the lungs are unsuitable for transplantation or it cant go ahead for various other reasons like me being too unwell or whatnot.


BRING IT ON!!! 




Last couple of weeks have been pretty crazy. I'm now living the single life now :P so out and about with mates more often and loads of time to do whatever I want really. Started attending the gym at the hospital for some exercise with the physio to help keep my muscles alive and me as fit as possible for when I get these new lungs!


Not really sure what else to tell you all. Everything's pretty good the now actually so the stress spots are finally leaving (which makes me less stressed naturally!)


I'll try keep this better updated and make it a bit more interesting with some photos and stuff :)
Much love! x

Monday, 23 August 2010

Too many thoughts

There's so much stuff swimming about in my head and to be honest I'm feeling a bit low. I don't like going in for a full-on big moan because I've always believed that if you just keep smiling and find the positives when your down, then you'll be back up in no time. But every now and again I can't help but feel a bit shitty and just can't seem to pull myself out of this one.

I'll say sorry first if half of this doesn't make sense or is all muddled up cause what's in my head is all muddled and I'm just writing whatever pops into my head. If it doesn't make much sense to me then i doubt it'll make much sense to anyone reading this. But really I'm mostly just writing it down to get it out my system and see if by seeing it in words will make me feel a bit better, rather than writing to all you out there.

Firstly, before I start my rambling, I just wanna say I really really apreciate all of you who have sent me messages and comments on facebook, comments on my blog or texts telling me your thoughts on my post or just how it's affected you. Actually, I wanna say thanks for reading this full stop. I never thought so many people would actually read this and especially never expected all the really nice messages I've had. Even people who I've never spoken to before in my life or only know from passing in school have come forward and said some of the nicest things. Every wee message, comment, text or even when you all 'like' when I post the link to my entires on Facebook, really cheers me up and makes me smile. It reminds me why I'm doing this and makes me realise that there are loads of really nice people who care. So no I don't find it weird if you comment or message me even if I dont know who you are or we're not mates or we've never spoken before. It still means alot to me.

So I've been in my bed the whole day. Haven't even bothered to open my curtains or get changed or showered. Not cause I'm unwell or tired. Just cause sometimes I don't see the bloody point. I try looking on the bright side of everything and I know things could always be a lot worse. But sometimes I just get like this and I suppose it wouldn't be human if I didn't give in to it every now and again? I look at people living their life every day. Mostly on Facebook I see people my age talking about work, college, uni, plans for their day, nights out with mates, holidays they've had an amazing time on, gigs they've bought tickets for and I spend hours looking through photos of other peoples nights out or weeks in the sun. And I can't help but feel jealous, maybe even a bit bitter. Cause I want that. I want the chance to do all these things. But I can't. I'm held back by tubes and a failing body.

Even the tiny things that everyone takes for granted. I did too before I got really ill. But I see so many people go through every day not even taking second thought about the things their so lucky to beable to do.

walk up the stairs and not spend 10 minutes trying to catch your breath again
leave the house and not worry about having to be home before the 5 hours is up when your portable oxygen is gonna run out
take a shower without having to sit down
walk through a shopping centre without having to hire a wheelchair to get you there
laugh without taking a coughing fit straight after it
sing
make your bed without it tiring you out so much you wanna crawl right back into it

I could make that list go on forever. Nearly everything in my day has to be thought out and planned. I don't want to have to do that anymore. I wanna be able to wake up, get ready, leave the house and stay out as long as I want and go where I want.

This transplant seriously can't come soon enough. But then I'm not even officially on the list yet as we're still waiting on some blood test results before they can put my name on the transplant list. So I don't even have that hope yet that 'tomorrow I could get the call'. And realistically I could wait 6 months, a year, 2 years for those lungs. Realistically I might not get them atall. Then if I am lucky enough to get a transplant, it's no easy way out. The pain will be terrible, my body will most likely try to reject the lungs a few times, it'll take me nearly a year to recover fully and I might only get a couple of years of normality out of it. Or of course, what I hoped would be my new chance at life could finish me off. These are all pretty morbid thoughts. But their also realistic ones. There's no point in pretending it'll happen really soon and all will go really well and that'll be my life sorted. Cause I'll just be let down and dissapointed when I realise thats not how it really is.

It's hard to pull yourself out of bed everyday or focus on the future when right now the good points in life seem to slowly be fading away. You loose nearly all your mates (they just start dissappearing off the scene and speaking to you less and less), although its shown who my real ones are (even if there are very few). The relationship with who you love starts falling to bits and you find yourself arguing more than your smiling. And these things create a sort of chain reaction which affects other bits of your life. Without friends you spend more and more time at home cause there's no one to go make plans with or hang out - the kind of things that help keep your mind off how much has changed and cling onto some sort of normality.

I want to do things
I want to start making a life for myself
I want to just have to worry and complain about silly things like how bad my hangover is after a night out with my mates

I want to be a normal 18 year old
I want to live

I've just spent the past 20 minutes or so complaining and feeling sorry for myself but I know tomorrow I'll wake up and find something that will get me out of bed and feel stupid for posting this. But even now I'm feeling a bit better now that I've put it all down. Or maybe it's the Tramadol kicking in and I'm actually just high.

Who know's but I guess tomorrow's another day right?

Thursday, 5 August 2010

Body image.

I had a meeting with my dietitian and psychologist today and we were discussing a few different things like my diabetes, feeds, weight and so on, when Diane (CF dietitian) asked my if I was interested in writing her a wee bit about some things I went through over the past year or two, so that she can show it to other teenage girls and young adults with CF who have recently admitted to having the same problems that I had recently. I actually feel pretty honoured that she's asked me to do it and really excited at the thought of having the chance to help other girls who are having a bit of a rough time. So I thought I'd write a wee bit on here and try to collect some thoughts and comments of other folk with (of even without CF) that I could include in my piece of writing.

Its really scary posting this up so publicly because I've let only a very small amount of people in my life know about these problems. Not only because I was a bit scared of being judged, but mainly because I've found it hugely difficult to talk openly about it. But now I've heard that other girls are going through the same issues and I've recovered so now its all about helping other people see that you can come out the other side and that there is loads of support available if you need it.

Nearly every girl/woman (and boys!) in the world will tell you that there is something they would want to change about their body, or are unhappy with their appearance or want to loose weight. Its impossible not to! With the huge amounts of skinny models shown in the media, we compare ourselves to them all the time when those types of body's are totally unrealistic and also unhealthy to keep up. Anyone who's tried to throw themselves into a gym routine and healthy eating diet knows that its seriously hard work and usually we give up and give in to that bar of chocolate or munchies your parents have picked up in the weekly shopping. But sometimes people go too far and fall into a dangerous cycle of not eating enough and/or over-exercising. I know this pretty well.

I was always a good, healthy weight when I was growing up. Sometimes actually I got a bit tubby and my mum even helped me loose a few pounds to prevent me becoming overweight - just like her and my sister. Which is pretty surprising because part of CF is that you struggle to keep your weight up and very often those with CF are underweight and its really difficult to gain weight. I never had that problem. But when I reached about 16 years old, I started becoming more aware of my weight and started watching what I ate to try loose some weight. At first it was harmless but then it became obsessive. It began with me loosing weight quite quickly when I was given some painkillers with codeine in them, which made me sick and we later found out I was allergic to them. But the feeling of loosing weight so fast made me feel more confident and people were saying how good I looked and noticed I was thinner. I hid it from everyone but I was totally out of control. Lying to people that I had already eaten to skip meals, counting every single calorie that passed my mouth and limiting myself to ridiculous amounts like 500 calories a day, walking everywhere I possibly could and making myself sick when I couldn't escape from eating. It was all I thought about every hour I was awake and it really did take over. Nothing mattered more than seeing the needle on those scales getting lower and lower. At my heaviest I was 8 and a half stone\size 10 or 12 and at my lightest I was 6 stone/size 4. For someone my height (5ft) that is a big difference. My hips, ribs, spine and bones I'd never seen before stuck out everywhere. My size 4 topshop ultimate skinny jeans were baggy on me. I couldn't sit anywhere that wasn't cushioned because the bones in my bum grinded off the surface when i sat down. My hair became dull and I broke out in terrible spots. I had no energy and felt dizzy and weak every day. That's when I decided I needed help.

I spoke to my dietitian who passed it on to the doctor and eventually I was referred to a psychologist who I met with every week or 2 and I was diagnosed with anorexia. To this day I still want to refuse that I actually had an eating disorder but I suppose part of the recovery is accepting that and moving on. I'm not going to lie, it was a huge struggle to try train my head into thinking normally again and every time I thought I was better, something would set off the trigger in my head and I'd be battling with my own thoughts all over again. I honestly thought I'd have to learn to live with the stupid condition forever. The thing which snapped my back to reality was when I was put forward for a transplant. I was told that if I didn't get my weight up to a healthy level, the transplant team would simply refuse to put me on the list. So I had a choice - start eating and get the chance to extend my life, or stay thin and die. Well I can tell you, I've never even considered the 2nd option. So that brings me up to now. Ever since I made that decision to keep my life, my thoughts on food, weight and body image have been changed completely. I even started taking overnight high-calorie feeds through a tube to help me put on weight because its incredibly hard to put on weight now that I'm unwell. Oh the irony! However, I've pulled myself out of the 'underweight' section on the weight chart and into the 'healthy'. Got a long way to go before I reach my target but I'm just so glad i don't have to battle with my head to get there.

Back to the main point. Its totally understandable for girls and young woman with CF to feel the same way as I did. Possibly even more so than anyone without CF. We are all hounded by doctors and dietitians to keep our weight up as high as possible to help protect us from infection. And I've noticed recently that nearly all the girls with CF have the same problem - all our weight goes on round our tummy's, leaving us with childish shaped bodies (thin arms and legs, bloated stomach with no waist or hips) which can leave us feeling frustrated and unhappy with our appearance.

I'd really love to hear from anyone who's experienced anything like this, has any thoughts on the topic or any ideas of what I could include in my wee article. I'd like it to be much more than just my experience - the more information or help we can give to these girls (and guys), the better! So if you leave a comment on the post I'll get back to you. Or you can send me a message through facebook or email (lou-01@live.co.uk) if you don't want to publicly post a comment. I really hope I can make a difference. Even if its just for 1 person!

Tuesday, 3 August 2010

On the mend.

Thought I'd put in a wee entry since I'm awake and got my concentration back.

First news is that I'm much better now :) woohoo! back on my usual 4L of oxygen through my nasal canula. Which makes me a happy bunny cause I was ready to hang myself with that silly big oxygen mask I was wearing for days. Couldn't eat, drink, talk, brush my teeth, do my hair, or pretty much anything with it on. Plus from having a big bit of sweaty plastic stuck to my face all the time its made me break out in spots pretty badly. So as you can imagine I'm looking super sexy right now! Also I've been taken off the huge dose of IV steroids they had me on twice a day, which I think was the reason for my lack of concentration. I was going AWOL! Must have looked like I had ants in my pants cause I honestly couldn't sit still. Or hold a conversation. Or control my moods. So apologies to anyone who was unlucky enough to be on the receiving end of one of my mood swings. I promise I'm not usually like that! :P So anyway back to the point in hand, I'm feeling much better than what I was when I came in, so by the end of the 2 weeks I should be feeling fabby!

I'd just like to say quickly about the windows in this place. I dunno, maybe its the OCD/clean freak in me taking over but my god you have no idea how badly I want to wash the outside of them! Anyone who's been up to visit me or been in Gartnavel themselves will understand what I'm talking about. Their so dirty that its actually difficult to see out them. Which is a shame cause there's a pretty good view over Glasgow from up here. It makes me genuinely really agitated just looking at them! AGHHH! Maybe if I say that their affecting my mental health they'll let me go out and wash them myself? :P

Yesterday my mum and Nana then best mate Kirstie came up to visit me :) which was a good laugh. Dean came up on Sunday and my sister is apparently coming up tonight. That's more people that have visited in ages just in a few days! It does kinda get me down sometimes cause when they hear that I'm back in hospital, so many people tell me they'll come and visit and sometimes even tell me which day they'll be up. But no one ever turns up. I'm not pointing any fingers or naming anyone cause there is a huge amount of people who have done this to me. And I know people are busy with work or just generally living their lives but I still can't help feeling a bit upset and let down when they don't turn up. I'd rather everyone didn't bother telling me they were going to visit until they definitely knew they were going to come. Even if its last minute its always a really nice surprise when someone calls and says their on their way up to see me. It gets so lonely sitting up here in a room for 2 weeks and because I've been in and out of hospital so much my whole life, I guess people just assume that I'm used to it and so theres no need to visit me. It's also really stressful on my mum. she comes up every day so its always nice to tell her she doesn't need to bother coming up cause I've got other visitors. So even though I'm kinda used to getting let down now, I don't think I'll ever be totally fine about it. I still can't help feeling a bit rubbish when I don't hear back from someone or they make other plans instead. Sorry rant over :P

That's all I have to say for the now. Keep getting distracted by '10 years younger' on the telly :P and dinner will be round any minute. Not that dinner is going to be anything worth getting excited about but I'm hungry so it'll need to do!

Thursday, 29 July 2010

Knocked back down again

So I'm back in Gartnavel. Not much of a surprise there since its been about 6 weeks since I was last in. But this time I'm really not too great!

It was all pretty sudden to be honest. I was out enjoying myself shopping on Friday, at a hen party on Saturday night, having Dean over on Sunday, cinema with Kirstie on Monday. All normal stuff and really busy in terms of my life. Then BAM! Monday night I start struggling out of nowhere. Well at least we never faffed about with the 'feeling-a-bit-under-the-weather' and wasting time this time eh? :P straight to the point! Although I would have liked it if I hadn't dropped this low.

So Wednesday was my first time in an ambulance. Sadly though, I was too ill to enjoy this new experience (but then that would defeat the purpose of an ambulance) and spent the whole journey chucking up my guts into a cardboard sick bowl (facing backwards in a fast ambulance and while your feeling nauseous isn't the easiest thing to deal with) and of course, really struggling to get a breath.

I was brought up to the ward, blasted with 15 litres of oxygen, had a venfolin put in my hand to get fluids, given an x-ray on the ward, given an ECG (which is a wee scan of your heart), my blood gasses checked, normal bloods taken and bombarded with the usual questions. But I was so exhausted I can't actually remember much except for that. What I do remember is later on when I tried walking the 5 steps to the toilet, I nearly passed out and it took a good 40 minutes or so to get back to normal except for the pounding sore head it gave me which took hours to get rid of. This tiny wee toilet adventure resulted in more doctors being called up, another ECG being taken and worst of all, my dignity ripped right from me as I was told if I needed to go, I had to use the commode. Anyone who knows me will be aware that this wont have gone down well as I'm quite a private person. So sitting in the middle of my hospital room peeing into a bedpan did not make me happy in the slightest! Even getting a nurse I never knew to help me into my PJ's didn't seem too bad after that.

Today was pretty uneventful and I spent most of it sleeping. Despite that things have improved and I'm now walking to the loo on my own so tomorrows challenge is to get into the shower to have a good scrub and wash my hair. With a bit of help from a nurse though (might as well just give in and leave all the dignity to the side till I can afford to pick it back up).

Well I'm off to get ready for bed (on my own yey!). Not sure when I'll update this cause I have pretty much zero concentration right now. I'd be happier staring at the wall in silence for hours rather than playing with my phone, talking to someone or watching the telly. Does anyone else ever get that or am I just a bit special? Speak to you all in a bit and I'll post again if anything else worth talking about happens.

And apologies for this being so boring. Like I said, I cant concentrate so writing this is, to say the least, a bit of a chore right now.

Ciao!

Thursday, 22 July 2010

A wee bit of history.

Well firstly, Hello :)

If you don't know me already I thought I better give you all a bit of background on myself so that everything else will make more sense.

Recently I've been reading a few online journals of people who have had lung-transplants and its inspired me to set up this funky wee blog to keep my friends and family (or whoever else fancies reading it!) updated on the process of my own lung-transplant - from being listed, the waiting time up till getting the big scary call and the long recovery process - and to help raise awareness of my condition and organ donation. Also I've been told that writing things down can be pretty therapeutic, which should come in handy cause this part of my life will probably be the toughest bit so far! I've never been very good at saying how I feel or even talking about things so you'll need to bare with me if I suck at it to start with :P

So anyway I best start explaining myself then...

I was born with Cystic Fibrosis. I'm not going to bother explaining what it is or what its effects are because anyone who knows me will already know these details. And I'm guessing if you don't know me personally and are reading this then you'll also be aware of CF, either by suffering from it yourself or knowing of someone else who has it.
A few days after the new year of 2010 I was admitted into Gartnavel General Hospital with pneumonia and was stuck in there for 7 straight weeks. From that infection my health deteriorated rapidly and since then I've never really picked back up again. Being left dependant on oxygen 24/7, a very restricted lifestyle and with very little independence (which is pretty tough going considering I'm only 18 and everyone my age is out making their career possible, partying, dancing, running, laughing and generally just living). So the doctors decided that the only option to give me the possibility of living past the next 2 years was if I was to receive a double-lung transplant. Scary stuff huh? I'm just so thankful that I have that possibility and that, if all goes well, I could have a whole other chance at life!
I was sent for my transplant assessment down at the Freeman hospital in Newcastle which is where they perform the lung-transplants. After 4 days of tests and monitoring, I was told that I was going to be placed on the transplant list, providing the lab can sort out some lab-y type stuff involving a few nasty bugs I have in my lungs that may make the transplant a bit more difficult. So since its only been about 4 weeks since I was down there, we're still waiting on these microbiology results coming back but as soon as that's sorted my name will be added to the list!

Now I'll go back a bit further. Unlike most folk who are diagnosed with CF at birth or very early on in their lives I wasn't diagnosed until I was 4, which meant my lungs were already pretty damaged by this point. Ever since then I've been in and out of hospital for 2-week courses of IV's pretty regularly, usually every 8-12 weeks. Sometimes only making it home for 2-4 weeks but very rarely did I stay out longer than 8 weeks.
Despite this I never let it hold me back! I worked hard at school and done very well in my first set of exams. Annoyingly I never made it to the end of my highers or finished my Photography course at college because of too much time in hospital and falling too far behind (theres only so much you can teach yourself out of books and highers are difficult when your there 100% of the time).
I always had some kind of hobby growing up and was always pretty damn busy. Dancing, swimming, cycling, horse riding, ice skating, craft making, photography, volunteer work with the elderly, going to gigs, parties and everything else that all my friends were doing at the time. I even learned to played the flute to a pretty good grade for 7 years, the saxophone to a similar grade for 4 years and the piccolo for 5 years. Being able to play three woodwind instruments when you have a life-threatening lung condition is something I'm pretty proud of to be quite honest!

After spending my whole life fighting against CF to live pretty much normally, its quite hard to swallow the fact that now I only leave the house for a few hours on average about once or twice a week, only walk for about 5 minutes before having to stop and sit down to catch my breath, and struggle with even the most basic things like taking a shower (no jokes about me being smelly cause I do wash!), walking up the stairs and making my bed. I rely a lot on other people like my Mum, boyfriend Dean and best friend Kirstie to help me which isn't exactly what I had in mind that my life would be like at 18.

But now I have the hope of getting a second chance at life to be young, independent and better than I've ever been. Roll on those new lungs!!