Monday, 23 August 2010
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
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
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 (firstname.lastname@example.org) 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
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!