Showing posts with label Deep Emotional Shizzle. Show all posts
Showing posts with label Deep Emotional Shizzle. Show all posts

OUTFIT: Speckled

french connection speckled jumper, leather trousers
Jumper: c/o French Connection Trousers: Zara Shoes: Mango

Yep, my mirror is seriously in need of cleaning! Is it bad that I was kind of happy the weather cooled down a bit so I could wear leather and knitwear again? This is the gorgeous jumper that I featured in my last vlog, it was kindly sent to me from French Connection. I'd loved it for ages after I'd seen it featured on a couple of my favourite blogs that had collaborated with the brand, including Canned Fashion and What I Bought Today, it definitely has those Marant vibes that I love. It's really warm and quite heavy too, safe to say I'll be living in it this Winter!

I went Millwall yesterday. They lost so I went home and ate all of the cake that I bought from IKEA, the whole thing. I'd been saving it for sad times. While I'm on the subject of pigging out I wish some people wouldn't stick their noses in and tell me how I've put on too much weight. I could explain to them how keeping weight on is one of the best ways to fight off chest infections when you have CF and that since I've put on these few kilos I've not had to rely on my overnight feeds as much (I haven't had one for 2 weeks. 2 weeks!!!) I could tell them that since I was born I've battled with my appetite and keeping weight on and that I'm feeling so proud that for the first time ever I'm managing to do so and that it makes me feel normal and not like an ill person. I could tell them that for once in my life I have a healthy BMI and that my lung function has never been so good in years and years. But I don't, because I shouldn't have to explain myself. I instead tell them to go and concentrate on their own lives because they clearly need to sort themselves out if they think a person of my size is overweight. Crazy fools!

Niamh Nelson x

OUTFIT: Tomboy

Tee: Uniqlo
Jeans: River Island
Shoes: Converse
Necklace: Etsy

Totes feeling a little boyish in this outfit. My £4 jeans! Really nice, but see what I mean about the rip sitting just a tad too high over the knee?

Seriously haven't been happy with this blog for a while now, looks and content wise. I'm not sure what I don't like about it but all I know is that it's driving me mad! I think that Jojo has lost her mojo (that's cringe, I'm so sorry.) I've been feeling a lot like that with life in general lately, I'm not a 100% sure why but I think it's because of all that CF stuff I mentioned, but didn't really explain, a couple of weeks ago. Sometimes it can really throw you, it can be quite hard to explain really, the best way to describe it is that feeling of being unsettled. I don't often think about the scary side of CF but occasionally it just won't stay out of your brain and I think the only thing to do is let yourself feel those things for a little while to get it out because it's ok to feel sad sometimes. I think it's the right thing to do because I'm starting to feel myself again. I can't spend my whole life worrying about the future, that's no way to enjoy the present now, is it? Anyway back to the blog. Basically, if I stumbled across this blog I wouldn't want to read it and that's not good. I was really considering starting all over again but that's just lonnnnng and this here blog holds a lot of memories. So I just played around with the layout and I'm a lot happier with it. Now I have these big ol' mirrors in my new room (eeeee!) I may start taking photos like this sometimes, or just having a play around so I don't bore myself! All in all, I think because I just changed rooms I'm all about fresh starts right now, ya know that feeling?

I think I'd maybe like to do some lifestyley posts because I get up to some cool things occasionally and it'd be nice to share if you'd be interested? I'll definitely be blogging about my room as soon as it's finished anyway! It's bloody gorgeous.

Niamh Nelson x

I Love George! (A Bit Of A Hench Post, Sorry.)


I was in two minds about posting the  because I guess some people may find it a little upsetting and depressing but in the end I did because for me personally I love to read and watch as much as I can about CF. CFers can't mix because we can pass lergies to each other that non-CFers can't get, which is quite weird when you think about it! So sometimes I used to feel a bit like dear old , because I was the only person I really knew who had to do the same medicines as me and things like that. So reading articles like that and then getting into social media like blogging and Twitter makes me feel less like poor Georgie Boy, although I feel a bit funny taking some kind of comfort out of others misfortune. I mean obviously I wish they didn't have CF! But you know what I'm saying right? 

As for the article, when it was first published (in August 2010 I think) it upset me because at the time it was when I really realised what CF was all about. I first found out about all the life expectancy business when I was about 7 and came across a CF awareness leaflet. I just remember being like 'OMG' and shut myself in my room for the weekend listening over and over again to a Motown tape (I was always a bit different.) But as I was a kid I soon forgot about it by the time I was at school on the Monday morning, although to this day I still can't listen to 'You Can't Hurry Love' without getting this sense of impending doom. I've no idea what caused me to get so panicky about CF when I was 17 but I remember all of a sudden feeling really upset and it lasted for a very long time. Then as randomly as it started the feelings went. I just thought 'Get over yourself. Everyone will die one day and you never know what will happen so stop wasting your life!' I realised that I'm lucky because although I have one bad thing I have more good things. I have the best family, some lovely friends and a comfortable life. I have enough food, clothes and shoes (err scrap can never have enough shoes.) I have access to the best healthcare and am far luckier compared to most people in the world. In the wise, but grammatically incorrect words of T.I., I decided to 'stop thinkin' about what you ain't got, Start bein' thankful for what you do got.' This isn't to say I don't have a little wobble now and again, but remembering this means that they don't last very long and I get over it quickly when I put my life into perspective. CF has made me really good at putting things into perspective, I wish more people did because they'd save themselves a lot of stress and worry! And leaving uni kind of taught me a lesson. At first I thought it was the end of the world and CF was a prick blah, blah, blah but now I know that if things don't go to plan then there's always other options. So if CF puts a stop to other things in the future, I think I'll be alrite. 

I'm not posting this for attention or to be praised, I just wanted to talk about CF. Sometimes I get this urge to talk about it, especially when I'm on IVs because they mess with my mind and make me emosh and reflective. (I feel like Carrie Bradshaw! 'I couldn't help but wonder...' haha. If only I had her wardrobe aye?) But it's not always appropriate in real life, it'd be well random to suddenly talk about it and people think I come out with weird enough things as it is! So the blog is the place to do it. And I like to hear others perspectives on living with CF so maybe someone might be interested in my view. But if not, no worries! I'm just glad to get things off my mind so I can  think about funner things, like that I proper want (but can't afford, so perhaps not such a fun thought!) I'm off was a Halloween miracle because we didn't get any trick or treaters last night so there is a big bowl of sweets with my name on it.

Niamh Nelson xx

Elle Magazine Article

Hallo! Found this article about CF in an old Elle UK mag (I think it's about one or two years old) so thought I'd post it in case anyone missed it. It can be a little sad at times, but I found it really interesting overall! It's also quite long, which I think is great because it means CF got a lot of publicity...Elle is the best selling fashion mag! Rachel Agutter is the niece of actress Jenny Agutter who is a patron of the Cystic Fibrosis Trust.

What happens to your happy ever after when doctors predict you won't live past 28? Cystic-fibrosis sufferer Rachel Agutter tells her story to Kerry Potter

Like lots of people do, I went to Ibiza after my A-Levels with a gang of friends. And I was an idiot, as you are at that age - I partied hard and barely slept. We were all run-down when we arrived home, but only I ended up in hospital for six weeks, losing a big chunk of my lung function.
I'd always been aware I had cystic fibrosis (CF) - I was diagnosed at six months old - but it wasn't until Ibiza that I had a realisation about my life expectancy. I couldn't just bounce back in the way my friends did. It shocked me because it was the first time I'd been really ill in an adult ward. I remember looking into other patients' rooms thinking they must have been in car accidents, but when I asked the nurse what was wrong with them, she told me they had CF. I'd never seen people like me at a more advanced stage of the illness. It was a glimpse of my future.
It was then, when I was 18, that a doctor put a number on my life expectancy for the first time - 28. Ten more years. As though I'd never truly understood before, I suddenly thought, 'I've got a terminal illness. I'm going to die.'

CF is the UK's most common genetic disease. One in 25 people are carriers and if both your parents are, there's a one in four chance you'll have it. It's a fault in the gene that means the salt concentration in every cell in your body is wrong. It's hard to maintain a normal weight because your digestive system doesn't absorb fat properly. And the mucus in your lungs is much thicker than normal, so you have a bad cough and are prone to chest infections, which causes you to lose lung function. Lungs don't regenerate, so any damage is irreversible. The only option you have is to go on a lung-transplant list when your life expectancy is less than five years and your lung function is 30 percent. Half of sufferers die before a transplant because there aren't enough donors.

Throughout my twenties, I had the age of 28 imprinted on my brain. As a result, I spent those years clubbing and staying up all night. I had no interest in long-term relationships. I wanted to have fun and for everyone else to have fun. Luckily, that's what they wanted at the time, too.
There was more to my life, though - working, commuting, paying bills - and some people would ask (and still do) why I wasn't just living it up on a beach in Goa. It crossed my mind at times. But if I were, I'd be somebody who's not dealing with things very well. What would I do? Come back home when I'm at death's door? I've had my whole life to get used to the idea of being ill. I've always had a daily regime of physio to clear my lungs, used nebulisers and taken pills - it may sound awful to you, but anything can become normal with the passage of time. I've always had the same aspirations as my friends: getting my own place, having a career. I like that sort of life. I am probably an inherently sensible person. I worry about the future of the planet. I have savings. I do want to live life to the full - but it's normality that I aspire to.

So after my post-Ibiza wobble, I went off to university and back to regular life. I enjoyed being a student and a year of travelling afterwards. It wasn't until I got my first job that I realised my limitations. I worked as a PA to a team of brokers in the City - it was long hours, hard work and a lengthy commute. I kept getting ill and my bosses would call me in hospital to find out when I was coming back. I think they just thought I was lazy and eventually I had to resign. I was so scared I wouldn't ever find a job again - who would want to employ me? My doctor told me to consider working part-time and I was devastated, I thought I'd never be able to be successful if I couldn't put in the hours to achieve it. I was 22 and all my friends' careers where taking off. We were at that age where people start to be defined by their work and I felt defined by having none.
I found a part-time receptionist job that wasn't too demanding. It gave me enough money to move out of the family home in Surrey to London with friends. I could focus on getting my health back on track and I had time to learn new skills. I ended up training as a magazine picture editor, which I still do on a freelance basis. Everything always comes back to quality of life - I can't imagine doing something I hate, nine to five, because it's such a large proportion of your life - anyone's life, let alone mine. Rather than curtailing my ambition, CF has made me more driven and spurred me on to find a career that works for me and makes me happy.

But then, of course, as I get older, everyone is starting to settle down - you go from thinking about the next weekend, the next party, to thinking about the next few years of your life. I met my boyfriend, Adam, at a music festival when we were both 26. When you have CF and a man pursues you, you know he must genuinely like you, because he's aware you come with baggage. I found out later he'd researched CF on the internet when he first met me. I felt able to open up to Adam very early on and say, 'Look, I don't know what my future is going to hold.' We've had some quite intense times - I had a period when I kept collapsing for no reason and I'd end up in hospital. He makes sure I take all my medicine and that I eat enough - he's turned into an amazing cook. As for the rest, his approach is to just take it one day at a time.
Four years ago, when I got to 28 years old - the year I was supposed to die - and was still fairly well, I thought, 'I'm here, now what do I do?' I had a great boyfriend, a great job - but no real plans for the future. And it coincided with a time when all my friends were starting to get married and have children. I deal with it by having projects year by year. Last year was about Adam and I buying our first house. This year we're doing it up. I don't know about next year yet.

I have been thinking about having children, too, and realise it's highly unlikely I will do it. It would be risky to my health, but also I wonder if it's selfish to have a child when you know full well you probably won't see them into their teenage years. Adam is very laid-back about it and thinks we should do whatever will make me happy. When you reach your thirties, everyone is planning the next 10 or 20 years and I can't do that. I try not to let myself get resentful - if I did, I'd enter into a horrible place. There are times, though, when you think the whole thing is really unfair. My brain is pretty good at blocking things, but sometimes something will set me off. It happened a few months back. I was having lunch with my oldest friends - I've known them since I was four - when one of them announced she was pregnant. Then another said, 'Oh, so am I!' That was a real tipping point for me. I held it together for the day, but when I got home, I cried to Adam for hours. Other people are so lucky to be able to do things without thinking about it. Every life decision I make has a million other factors. But I need to make sure I remain close to my friends and don't turn into a bitter woman. I don't want to be that person. I worry, though, as everyone gradually moves over to 'the other side', will I be stuck in this Peter Pan moment?
I'm not obsessed with numbers any more - 28 was the big one and it didn't happen, so I realise now that you really don't know. I could get ill tomorrow, never bounce back and die. Or I could gradually get more ill, month by month. It's difficult to get used to the fact that it's completely unpredictable. I'm not 32 and my lung function is 45 percent. My doctors told me last year I might make it to 40 years old if I'm really committed to my treatments. That motivates me to work hard, but it's difficult when I do everything I can and my lung function still goes down. It's beyond my control.

It would be nice to say the person I am has nothing to do with CF, but of course it has everything to do with it. It's shaped my personality in all sorts of ways. It makes me tolerant - I'm good at putting things into perspective. But when friends moan about small things - say, if their boss is being annoying - I accept that everything is relative. If I was in their position, I'd feel the same. I have to take a step back, otherwise I'd fall out with everybody. I know that if I didn't have this illness, I'd soon find something else to worry about.
Recently, my parents retired and moved permanently to their holiday home in the Cotswolds. They are having so much fun, going away, spending time with their friends. It must be great at that stage in your life. For the first time, I've realised I'm not going to be like my parents. I'm never going to be in my sixties. It makes me feel sad. But, at the same time, I think, 'You never know.' I've always had this little kernel of hope that there might be a cure. I truly believe that children born with CF now will see a cure in their lifetime. That brings me some comfort - as well as making me a little jealous that I will probably miss it.

For more about cystic fibrosis, visit

Me VS Food

Be warned, I have a lot to ramble about today haha! So today I went to hospital because they wanted to see how I'm doing on these IVs. I told them about the weird side effects and they said if they're too much I can change antibiotics, but I decided to stay on them because there's very few I can actually have nowadays because I'm resistant or allergic to them. Can't be bothered with the hassle of changing! They do take ages though, as usually I have to push the drugs through a syringe like but this time one of them is in like a bubble thing. I have to wait about 45mins for it to go through, meaning that IVs are taking me about an hour to do this time rather than the usual 15mins or so. Doing this three times a day is knackering!

But this isn't my problem, right now it's my weight that is giving me aggro. I was shown a chart of my lung function and weight over the years. The higher my weight has been, the better my breathing is, so I have to have a very high calorie diet and have a feeding tube, which I wrote about . I have the poorest appetite ever and am naturally slim anyway, so keeping weight up is such a challenge. What doesn't help is that I find eating to be a chore. Since I can remember I've been constantly interrogated about food and how much I've eaten that day. My family are constantly saying 'Are you hungry? What have you eaten today? YOU MUST EAT!!!!!' It's the most annoying thing ever, it's like I'm 19 now please just leave me alone. I know they nag because they care, but I just wanna do my nut whenever someone talks to me about food. I'm gritting my teeth now just typing about it haha! The more someone nags you, the less you wanna do it I suppose. 
I so badly wanna put weight on though! I don't look good superskinny and my clothes are hanging off me which is annoying. Plus I want my breathing to be better! So I'm off to eat cake haha.

CF Strikes Again

I have a feeling this will be a long 'un, I'm in the mood to ramble which I usually do in my diary but I cannot find it anywhere. I pray my brother's haven't stolen it, God help me if they have haha! But I did say I wanted to give as honest an account of living with CF as possible on this blog, so I suppose it'll be a relevant post?
Having Cystic Fibrosis means I am technically always ill. I'm always breathless...I can't remember the last time I woke up in the morning without feeling breathless. Nowadays I have to get downstairs to do my nebuliser as soon as I'm up to breathe in medicines that give me my breath back. I don't think I've ever shown you what a nebuliser is, so here's a terrible picture of me doing it: 
I'm not really sad, just playing around!
It's basically a machine that you pour liquid medicine into and it turns into smoke which I breathe in (I'm sure there's a technical term for that!) Without it, I wouldn't be able to breathe at all, so it literally keeps me alive. I do it three times in the morning and three times at night, which takes about 20 minutes which is fine; it's just so bloody noisy! Being breathless all the time means I also get really tired easily because my body has to use more energy in order to get my crappy lungs to work. So I take a lot of naps and have affectionately been nicknamed Aunt Josephine from Charlie and the Chocolate Factory due to me spending so much time in bed.
But these are things that I can live with...after all, I don't even remember what it's like to breathe easy like other people do, so I don't really know any different. You just get used to it, so you feel like you're not that ill, know what I mean? It's a different story when I get a cold though...99% of the time it'll turn into a chest infection and I'll have to start IVs, which I wrote about .
And that's what's happened now! I had the usual sneezy cold, but it quickly turned into a chest infection and it's particularly bad this time round. You can hear my chest rattling when I breath as it's so full of crap and I've been coughing up blood. This isn't as serious as it sounds, it's basically blood vessels in my lungs that have popped from the force of coughing so much, it's similar to how a nosebleed happens. It's just unpleasant and annoying! 
And what's especially annoying, as all CFer's can relate to, is the timing! For your birthday, CF will give you a gift in the form of a chest infection. If you're going on holiday, CF will play up even more just to remind you to take it with you. It's Sod's Law, but I also think it should actually be listed in the official symptoms of CF: 'Will play up at the worse possible moments.' For me now I was supposed to go back to uni on Sunday but who knows when I'll be back? I finish on the 17th May so I don't have long until my first year is over. I feel like I've missed so much and it does upset me, but what can you do? I'm lucky that I'm even well enough to have the opportunity to go to uni...a lot of people are too ill to. I've got tons of work to do, but I'm not up to doing it right now so that's stressing me out. I'm also moving house on Friday, so I've got my room to pack up but I'm not up to that either! I had a month off when I didn't do anything, why couldn't I have got ill then haha! 
All I can do is wait for these IVs to work. It was just over a month ago that I finished a 5-week course of them, so it's a pain to be on them again so soon. I used to go about three months in between doses, but this year I've been on them almost constantly since February. I'm a bit worried about this; as you get older, CF gets worse which does mean more frequent courses of antibiotics. I don't want to be at that stage yet, I wanted to get through uni without loads of IVs. But now I'm realising the full impact CF can have on my life...when I was younger, it'd maybe stop me going out to play and I missed loads of secondary school and sixth form, but it didn't really matter because I caught up easy. But now that's harder to do, especially as I'm in London and uni is in Canterbury. I feel really detached from uni life and everyone there, although I keep in touch with people. I never imagined I'd have this much time away, things just aren't going to plan. Being a worrier, I then start thinking about my future...will I ever hold down a job? How 'normal' is my life going to be? But no one knows how their future will work out, things don't always go to plan but you just have to find alternatives I suppose. And I'm probably being a drama queen, this might just be a blip in my health! 
Well I think I've most definitely rambled enough! If you've actually got to the end of this, well done haha!

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