Showing posts with label Life. Show all posts
Showing posts with label Life. Show all posts

Spark Joy

Hi frens! How are we? Quick update since we last spoke, it's been a little while I know, but I was laptopless and also busy because somehow I was able to drag my summer hols out for a whole four months. I've just moved into a new (happy) place in Brighton and am about to start my second year of uni, so that's where I'm currently at in life. I had many truly wonderful moments and also some horrendously bad, I would say it was an extreme time (much like that crazy heatwave, hey?)

But I'm not gonna put all that drama on here as this isn't Facebook. Who knows, I may say something of my experiences one day as they were certainly learning curves but for now I would like to not talk about *crippling depression* and instead have a mini rant discussion about why I've felt a bit distant from the blogging world lately.

I spent a lot of the summer volunteering again at the Fashion and Textile Museum, I'm sure I'll be posting about that at some point as even though the exhibition is over now I really want to keep the diary aspect of this blog going. One of the major things that really turns me off about blogging/social media is the commercialisation of it. Yes gurl, get that dollar, I myself have done the odd sponsored post and also posted about products I've received. But oh man is it constant 'SELL SELL SELL!' sometimes. I like shopping as much, if not more, than the next person but if even I am getting overwhelmed by it all then surely most people are. Life moves on and times change but I know when I started reading blogs it was because I was a nosy bugger who wanted to know what people were watching, what they were reading, what they were thinking and not only what they were wearing and buying (I'm a creepy person like that ok.) I liked to see a bit of personality. I don't know, it's a tricky one - it's incredible that people are earning actual money, enough to live off and then some, but it's just so in your face sometimes like #AD #AD #AD and it's just so bland. Don't get me wrong, I like a bit of mindless escapism (hello, TOWIE) but I guess it'd be nice to see someone write or wear something for the genuine pure joy of it otherwise life seems pretty soulless. Which it certainly is not, there are so many things to get excited about and I just wanna know what really floats someone's boat rather than that same mascara that twenty other influencers are raving about until they're sent a new one a week later. 

So yeah, that was a bloody long way of saying I will  be posting a lot more about exhibitions and art and life things.  Things I like. I did try therapy but I've worked out that really the nicest thing I can do for myself is a late night brain dump on here about whatever the hell I feel like talking about - whether it makes sense or not the next day will be a surprise, much like my drunk texts. If you think I chat nonsense on here, well you ain't seen nothing yet.

(But don't worry if you're here for the fashion, I obviously still love it so there'll still be some of that too.)

Niamh Nelson x

Week #31

Hey! How are you? I hope you all had a merry Christmas or just a happy day anyway if you don't celebrate it.

asda christmas bedding
Super cute bargain ASDA bedding!

I don't want to look insensitive or something because I know it can be a difficult time for a lot of people but I have to say I had an absolutely brilliant day! Baby Florrie came in the morning, it was her first Christmas so it was extra special and then in the afternoon we went to my aunt's house for dinner which was a little different as we usually have it at ours. It was really lovely, lots of laughter, food and pressies and a little weirdness too...for some reason someone put happy and you know it on Spotify so we were singing along to that at one point. I'm very, very lucky to have such a big and wonderful family, I'll never take them for granted! They were very kind and spoilt me too much, I won't do a 'What I got for Christmas' thing but I'm sure some gifts will be popping up in posts soon. Then on Boxing Day I just stayed indoors with Freddydog while everyone went back to my aunt's for leftovers because I felt absolutely knackered - don't worry though, they brought me some food back! Was nice to spend the day with Fredster though, he couldn't come with us on Christmas Day because my aunt has a cat and although they've never met I don't think they'd get along too well and we are not Eastenders - no fights for us on the big day!

A happy day couldn't have come any sooner to be honest, while I was on IVs I was feeling so down - absolutely nothing was making me happy, I couldn't eat, didn't want to get dressed etc. I had all these scary thoughts about the way my health is going, I'd be so frightened I'd feel physically sick and it was so not like me! Obviously I do have all of these worries which is only natural being in my current situation but I never get worked up like that! I can only put it down to the IVs making me insane in the membrane because they seem to do that sometimes. Plus after the last dose wore off Christmas Eve I was feeling super happy and normal again! But all of that is the main reason I didn't blog for a bit, I would've explained this in my last post but didn't wanna put a downer on Christmas haha. Just thought I'd mention it though because I don't think things like that are really spoken about that often by people with CF/chronic illness because it can be a hard thing to admit to so sometimes when you feel scared you feel like an idiot because everyone else seems to be coping so well. So in case you're in a similar sitch you're not an idiot, you are NORMAL. Everyone gets scared and down sometimes, we're only human after all!

Anyway I hope you're good and have been stuffing yourselves silly! What did you get up to the last few days? 

Merry Christmas

Hey! How are you? Just thought I'd pop by quickly and wish you a very Happy Christmas/Happy Holidays!

I was feeling pretty tired and ill these past couple of weeks but today I woke up feeling tonnes better just in time for the big day tomorrow! I've had my last dose of IVs and spent today with family and friends which was really lovely.

I shall leave you with some kind of Christmassy pics because I gotta go and stuff my face and watch something festive.

Merry Christmas luv me and Fed-Fed dawg xxxx

Week #22

Happy Sunday! Ew sorry, that was an ick phrase. It's actually been a busy week for me for once, I've been feeling quite well so I took the opportunity to do a few things. Although when I say well, it's not going to be a 'healthy' person's well. There's still plenty of coughing, plenty of sickness and plenty of struggling to breathe while trying to do simple things like wash my hair but just a little bit less so than I have been for the last few weeks so I've obviously been very happy about that!

diet coke j.w. anderson collection
I was kindly sent these bits from the Diet Coke J.W. Anderson collection - the designs are pretty snazzy, huh? You can buy the bottles individually for £1.95 each and there's also

At the beginning of the week I went for dinner with my friend, we sat in Prezzo for 4 hours and we waited soooo long for them to get us our bill! Personally I don't think they wanted to get rid of us, we obviously made the place look young and hip and cool (of course that phrase proves I am none of the last two things.) 

Thursday was just the happiest day, I went with some family to the Tower of London which is one of my favourite places in the world! Granted I have not been to many places in the world but even if I had it would still be up there at the top of the list because I'm a geek and love British history, especially Tudor shiz. I have a post, two posts in fact, of that coming up next week so keep an eye out for those! I seriously struggled walking around the Tower, it's a massive place with so many stairs and a lot of it is uphill so in hindsight it would've been a good idea to have brought my oxygen. I was thinking about it but I felt that if I brought it it would be a sign of defeat - silly, I know. But no, I never, I instead huffed and puffed all over the place and coughed so much I got sick in a bag in front of a member of the Queen's Guard - not my finest moment. I almost teared up when that happened, not out of embarrassment but because my cousins rallied round me to help and you when you're just like 'You do this for me? I feel so loved I love you!' especially because of them is an 11 year old boy and he was helping me wipe my jacket with a tissue. Like what little boy would do that without being grossed out? He actually broke his wrist the day after so am sending all the healing vibes to him! Sorry for discussing me throwing up on this blog but as you can see it was a touching story. Anyway point is I have an amazing family and I know just how very lucky I am to have them all <3

This weekend has been super fun, my bubba niece Florrie has come to stay over for the first time! She's 8 months now and is crawling all over the place, she's just the loveliest little girl! She's just so happy and any little tune starts playing she does a little bop :-') Luckily she likes the dog a lot, as long as he doesn't get too close to her food! Love her lots, could just squidge her. 

I know I've been banging on about  what a fab week I've had but it's also been tinged with sadness. You may rememberYou might have seen already I'm so sorry to tell you that last week she passed away, three days after her 17th birthday after the doctors told her there was nothing they could do for her as she was fighting an infection that couldn't be treated alongside the rejection of her new lungs. Everyone in the CF community are heartbroken and I can't even imagine what her poor family are going through. and it's just so unfair that her new lungs didn't give her more time. Transplants are in no way a cure for CF and you're still left with a very uncertain future if you're lucky enough to receive one at your time of need but they did give Katie an extra two years. If someone hadn't made the decision to become a donor she wouldn't have had that which is why organ donation is such an amazing thing and why I always say if you'd accept organs if you needed them then you should be prepared to donate. I get why people get put off doing so, I actually have a whole post coming up on this to give people a bit more info on it, but when it comes down to it that's what you should think about I reckon! I'm so gutted to have had to end this post with this horrible news, I so wish I could be telling you that Katie got better and met Zoella and did all the other things that she could have done were it not for CF. It's such a cruel thing.

But I hope you've had a good week! I hope you've been happy and healthy and with the people you love. Life is precious and you must enjoy it as much as you can, even when you're being sick in public ;-)

Week #20

Hello! *waves* how are you? I wanted to get some more blog posts up this week but I've felt so rubbish it just didn't happen. But only rubbish in my body, my mind is good! I am feeling crappy but happy. Mainly tired though, so I've done lots of sleeping.

I grew my eyebrows out to try and be trendy but now I think I've gone too far and I look like an old man teacher we had in secondary school.

Was up the hospital three times this week because I am back on *dun dun duuuuuun* Tobi and Mero for any CF people reading this, so not the dreaded cats pee at least. Had the first dose at the hospital as usual but it wasn't too boring because I watched The Ashes with the doctor. Had no clue what was happening but the doctor explained all to me. I was expecting to go on them and as long as they make me feel better, even just in the short term, then I will be happy. I need to be better by next weekend because it's my best friend's birthday and I don't really think I can go to the club wearing my oxygen backpack. On the plus side I could just use it to hit away weirdos that try and grind behind you.

I've started to wear my oxygen in public here and there lately, you get the odd look but it's out of curiosity more than anything, you can't blame people for that and no one is horrible. But I had it on in the chemist when I was ordering a drug that's also used by asthmatics and I kid you not the pharmacist asked me:

'Do you have breathing difficulties?' 

Yep, while I had my oxygen on so you can't exactly miss it. So I said 'Obviously' and gestured to my face and she asked me if I'd been to the doctor's about it. I do wonder how some people get their jobs you know.

But it hasn't been all hospitals and medicines and whatnot, like yesterday I saw my little cousins (they've just come back from Blackpool and brought me back a little bracelet they won on the penny machines, so cute!) and then me and my mum watched The Woman In Black 2 which was scary but had a rubbish story line. My mum kept screaming (can defo see why ) which made Freddydog go crazy, he uses any excuse to make some noise!

Oh and before I go, in case anyone was interested in an update on look what has now entered the equation:

Sorry for the rubbish quality

A wild parakeet! We used to get them all the time and now they've come back. So bright and beautiful! So random! And so greedy! They eat all the bird food. It reminds me of when I was at school in London and every Maths lesson my friend said she could see green birds and no one believed her, it was like the chicken in OITNB - a myth. Then on our last ever Maths class we saw like a whole flock fly out from the trees and it was like her moment, she was right all along and we were sorry we doubted her.

I hope you've had a good week! Tell me something that's made you happy, big or small! And have you seen green birds in London?

Week #17

Hello *waves* how are you? I know I've not posted very much but I'm quite happy not to, I'd gotten into that thing of being pressured about posting and stats and all that but since I've got home from hospital I've got a grip. I've much preferred just blogging when I feel like it without feeling like it's not good enough and it's feeling like the fun hobby it was I first began - like the good ol' days :'-) I do need to have a catch up with comments and reading blogs though!

Pretty flowers in the garden

So this week I had clinic all was well and they took some bloods to send off to the transplant clinic. I didn't mention this before but they've sent my basic details off to them just to be prepared in case my lungs are starting to pack in and I'll need to be assessed for lung transplant. This first step is absolutely nothing to panic about, all it is is I've had a crappy year of health and I've started to need home oxygen. I may get better, might stay stable like this for years and years or I am actually starting to approach end-stage CF - there's just not really a way of telling! But the transplant assessment process can take a while so just in case I do need to start all that they have the basic results already covered so they can get on with more important tests. It's just a precaution, it in no way means I need a lung transplant now or anything! I'm completely calm about it now and I don't feel I'm going down that road yet (or maybe I'm just in denial haha!) but I won't lie, it did freak me out for a few days. It's the first time the 'T' word had been mentioned and I guess it was kind of a sobering moment. I know what CF does and I've seen it take away so many beautiful people but there's always been that little voice in my head saying 'But it won't happen to me!' Stupid, but I suppose we all think we're invincible right? ;-) 

Sorry to go all deep on you there but you know I like to document all my CF going-ons! Also I had a drink for the first time in months Saturday night, just one, which is making me all chatty as I'm typing haha. Yesterday was actually really nice, me and my mum went shopping (didn't buy a thing, go meeee!) then we saw 'Amy' which was fantastic. I love Amy Winehouse's music but never really paid much attention to her as a person. I obviously remember all the newspaper stories and while I did think 'Poor girl' a lot of me used to just write her off, like she was doing it all herself and that. But this really changed my perception of her and I just feel so sad and sorry for everything that happened. So heartbreaking but now when I think of her I'll be remembering that fresh faced girl she used to be and not the beehived wreck she became. Whether you were a fan of her music or not, I think it's a must see.

I feel like I've this post is a right downer haha but I've had a happy week, honest!! Me and my mum also had Five Guys yesterday and went to the pub after the pictures for a drink and played and lost on the pub quiz machine. Then I also saw my bubba niece Florrie, she waved and it was the cutest thing ever! I can't believe she's 6 months old, it's going quick but I think it's exciting that she's getting older. I know it's ages yet but I cannot wait til she can talk and we can know the thoughts in her brain! To have little conversations with Florrie is something I really look forward to but for now we're loving all the bubba cuddles!

How's your week been? Have you seen 'Amy'? Tell me your favourite thing you've done this week!

OUTFIT: Play Ball

Top: Olive/Jeans: Monki/Shoes: Converse/Bag: Kanken

That is one evil, creepy smile! So happy with this top, I wanted one ever since I saw this photo...I've been feeling sporty, Converse looks lately, who knows why because I'm certainly not a sporty gal. Love watching sports though, I'm hopefully going to Millwall on Saturday if I have the day off work...can't wait! Did you watch the match last night? YES England!

Yesterday I went shopping with my ma, I found that hat I was after but unfortunately it was too small, even for my peahead. I'm hoping to find something similar though because it did actually look quite cute. But I did spend rather a lot on something rather nice. Well, a lot for someone who is supposed to be a spending ban. I'll probably show you soon, even though it's a coat so I can't wear it yet. My mum said it was a bit premature to be buying a winter coat already but this is England! You can never be too prepared for Winter.

Niamh Nelson x

TRAVEL: Gran Canaria

I am not a bikini girl! All of these are super old. (Check out my instagram, I'll be posting a couple of  holiday outfit snaps.)

Hello! You ok? I'm BACK. I realise I didn't actually tell you that I was going away on my jollies and now I feel like that was kind of rude of me. And now I also feel like that's kind of arrogant of me to say know when bloggers are like 'Ahh sorry I didn't post yesterday!' and I can't help but think 'WHO CARES, my world didn't stop because you didn't blog yesterday' (even though on the inside I was real pissed off that there was nothing new to read.) 

I realise that this post's title is slightly misleading because there are no photos of Gran Canaria but I thought I'd whip up a quick post to explain my absence in case anyone was curious. To be honest I just spent the majority of my time floating round the pool plonked in a rubber ring and as wonderful as that was for me, it does not make for good blog content. Despite my best efforts I didn't tan, I burned and now there's a slight peelage sitch (won't lie, I'm loving it because I'm a sick person.) My hair is blonder though! And drier. My beauty regime (LOL, me + beauty regime....really?) went out the window when I was away, I will always be in awe of girls who can keep it up because I could barely manage bronzer in the evenings I got so lazy! It was nice and relaxing and baking hot and I only fell out of my swimsuit once so all in all it was a successful trip. Back to reality now and I'm actually happy to be home again and reunited with Freddydog! I missed my silly pooch. Still need to unpack though, not fun.

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

CF: My Hospital Stay

Honey I'm home!  How are you? Been quiet on here but I have a reasonable excuse...woke up at like 3am on Wednesday morning unable to breathe so ended up at A&E at 9am...

Looking gorgeous here ain't I haha :') but yeah, I had loads of oxygen, blood tests (5 needles!) an ECG and then an x-ray which showed I had pneumonia in the bottom of my left lung. I won't lie, I thought that you only caught that from freezing conditions so I was quite surprised. They said it wasn't really any worse than any of my usual CF chest infections but they kept me in anyway. This is where I was:

My Room (have to have an ensuite room to myself because there's a higher risk of me catching things)

My View

My Food (grim as it looks)

My Outfits (pure dedication to blogging, no?)

All in all I will reluctantly say it wasn't too bad although I hated it. I avoid hospital stays as much as I can, last time I was there was February 2012 so I guess I've gotten away with it for a while. I had some issues with the nurses (not all of them though may I stress!) because they weren't being very sterile with my IVs but I won't bore you with that. I like to think I'm quite good at dealing with CF stuff but I don't know why I don't cope so well with hospital stays. On Monday night I ended up having this huge panic attack in front of everyone which was kind of awkward and I was crying for like 3 hours, it's hard to explain but I just felt very claustrophobic...even the wristband I had to wear was freaking me out! It's because I waited all day for the doctor to see if she'd let me leave but I didn't see her so I just had a bit of moment. I also blame IVs, it tends to do funny things to my brain! But I got out this morning so it's all good. It's weird though, because the only day I felt ill was that Wednesday that I went in, other than that I feel perfectly fine. My lung function was normal and most excitingly of all, guess who weighs 51.6kg? ME, yeahhh boy! You might be totally confused, lettme just quickly explain. With CF it's better to weigh more but ironically CF makes it harder to gain weight. My goal was to reach over 50kg, I hadn't over 48kg since I went to the adult clinics a few years ago so I happy! The weight gain is probably why I don't feel as crappy as I should, I was surprised I'd put it on though because I don't look like I have. Apart from my face though, I'm such a div because a few days earlier I was looking in the mirror thinking 'OMG why is my face all swollen??' but it wasn't, it was just fatter haha. 

Anyway, I'm back home and on IVs, just over a week to go on them so I just gotta use that time to rest and things. I'll be back at the hospital in a week's time to check the pneumonia has gone and that my IVs has done the trick, fingers crossed it has!

Niamh Nelson xxx

P.S. THANK YOU for your lovely messages, definitely cheered me up :D xxxx

Life: Ireland

Hello! How have ya been? I got back from Donegal, Ireland yesterday and I'm missing it already. I miss how chill it is. I miss the beaches (way more beautiful than those tropical ones plus they're nearly always empty so you kind of get your own private beach!) I miss the cows. I miss the GREEN. I miss the not understanding a bloody word anyone says. I miss eating every half hour. I miss smiling at total randomers on the street. Most of all I miss my grandparents (who were very happily surprised to see me, luckily I didn't give them a nasty shock.) Tell you what I don't miss though. THE MIDGES. Eaten alive I was. I even got bitten on the antihelix on my ear (totally Googled that) and there ain't even anything tasty there to bite. If I was a midge I would go for something juicy like my thighs, but NO some dumb one bit my ear and now it's almost double the size of my other one. Awkward times.

I waaaay overpacked and of course only wore basically the same thing every day:

Oh, and this happened at the airport...

More on that tomorrow! Can anyone guess what I bought? First things first though, back to work for me today. Wish me luck avoiding the Zara sale...I have a Zara to my left, a Zara to my right and a Zara right in front of me where I work so it is gonna take a HELLA lot of willpower. 

Niamh Nelson xxx


Hi! Today I just wanna tell you about an event that Edita of Pret-A-Reporter  has very kindly asked me to be involved with:

CATWALK4CHANGE! Edita has teamed up with Models of Diversity to put on a fashion show with a'll be bloggers (including me, eep!) walking down the catwalk, the main aim being to say that there is beauty in all of us, regardless of race, size, age and ability....a message that the fashion industry and the media in general doesn't always necessarily promote. One of my favourite things about the blogging world is how diverse the range of bloggers are and it'd be great to help encourage a bit more of that in the fashion world. As well as this, all proceeds from the event will be going to two amazing charities, MIND and Macmillan. Very worthy causes right? The event takes place on the 6th September, with tickets being available for sale from the 1st of July. Exciting stuff! Would love to see you there! 

Niamh Nelson xxx

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

National Transplant Week

This week (9th - 15th July) is National Transplant Week. I wanted to do a post on it because organ donation is something I so strongly believe in. I'd be a strong supporter regardless of whether I had CF or not, but having CF does mean it's a cause close to my heart.

Cystic Fibrosis doesn't have a cure yet, the symptoms can only be managed. Despite all the medicines and treatment required to keep lungs healthy, they still get worse and often the ultimate outcome is lung transplantation as they'll be so badly damaged. CF affects many other organs too, so CFer's can also need things like liver transplants too. I know and know of so many young CFer's whose lives have been transformed after receiving their new lungs. Without them, they wouldn't be here today which is what make organ donation so amazing. But I also know of many who have lost their fight with CF after waiting on the list for too long. 

This is because of a lack of donors that have signed up to the register, I think it's one of those things where people say they'll get round to doing it but forget to. Or in many cases, people haven't told their loved ones of their wishes to donate their organs after they've passed, which is the theme of this year's National Transplant Week. When a family member or friend passes away it's an emotional time and often the thought of letting doctors take their organs is too much to bear, but if they know it's what that person wanted then they're more likely to let it happen and more lives will be saved.

But I know that some people just don't want to donate. Even some very close family members and friends have said to me 'Oooh, I don't like the thought of someone cutting me up!' It makes absolutely no sense to me at all to think like that because, sorry to be blunt, you'll be dead, ain't like you're gonna feel it! No one likes to think of death, but I think of it as living. When I die, if I can give my organs to someone so that they can live then it means that something good can come out of something bad, know what I mean? I don't know why you wouldn't want to give the gift of life...after all, if you were in need I bet you wouldn't think twice about accepting a donated organ! 

To find out more, visit  and to sign up to the register go . Here's some great info as well:
Organ Donation Facts and Figures

I'm so interested to hear your views on this! Let me know what you think, whether you agree or not. Don't be afraid to say if you don't...after all, we're all entitled to our own opinions and it's totally your choice! 

Niamh Nelson xx

How My Mulberry And I Met

Sounds like a love story doesn't it? And it kind of is...I fell in love with the Mulberry Bayswater as soon as I saw it in Selfridges one day. But it was scarily expensive, so I just had to walk away. I did a post on this before, but it was a bit crap...hopefully now I've found my blogging feet I can maybe explain it a bit better!
I'm not writing this to show off and be all like 'Look at my designer bag!', I just want to raise a bit of awareness about the . It was thanks to them that I got this bag! They contacted me when I was about 15 after my nurses at the hospital referred me for a 'wish.' I could basically choose anything I wanted...a trip to Florida, a swim with dolphins and so forth. Well sitting in a pool with giant fish would scare the life out of me and I'm terrified of heights so Disney World would be totally wasted on me. I'm a giant wimp! To the horror of my brothers, who wanted a skiing trip, I chose...a Mulberry bag. 
A lady from the Starlight Foundation met me and my Mum at Oxford Street and we spent the day looking around the shops before finally hitting Selfridges where I chose a Mulberry Bayswater in Natural Oak Leather. I can honestly say it was one of the best days of my life! It even made my local news with a cringey picture of me and quotes that I definitely did not say 'All of my friends keep coming round to see it!' Er, none of them were that sad or even knew what Mulberry was and most still don't to my dismay!
It might sound stupid and maybe even shallow to some, but this bag does actually make me feel better. When I'm feeling ill or sometimes upset, it puts a massive smile on my face. That's what makes the Starlight Foundation so amazing! So I just wanted to say a massive thank you to them, they do so much for ill children (most of whom are far more deserving than me!) and since I feature my bag on here quite a bit I thought I should explain where it's from.

Niamh Nelson xx

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!


I had an appointment at the CF clinic on Tuesday, so I thought I'd write a bit about it to give an idea of what a typical hospital visit is like. Brace yourself, because this might be a long 'un!

Firstly, I get weighed. A CFer has to keep weight up because it helps fight chest infections and since we tend to lose weight quickly it provides reserves for when we're ill and have no appetite. I have to take tablets called Creon (not crayons!) for everything that I eat in order to keep the calories that I'm consuming. I also get to eat as much crap as I want...I like to think of this as a perk of CF haha. But I have been known to go in dressed like this to seem heavier.

Ok, maybe not quite as extreme as this, but I can now fit three pairs of leggings under my jeans. It's because I get nagged so much about my weight, but I suppose being moaned at to eat more chocolate isn't the worst thing in the world!

Then I have a lung function test. This is basically a machine where you put a mouthpiece in your mouth (sorry that's a bit obvs, where else would it go!) and take a massive breath in. Then you breathe out as hard and fast as you can. Two measurements are taken as you breathe out: an FEV1 and an FVC. The FEV1 measures the amount of air you breathe out the split second you blow and is the most important one. The FVC  measures the total amount of air you are able to breathe out. This time my FEV1 was 50%, which had gone up so I was very happy indeed! It's a direct result from putting on weight, so I shall be stuffing myself this Christmas. I still get breathless very easily though; to put it into perspective, the average healthy, non-smoker has an FEV1 of around 75-80%. 

Then I see the dietician and doctor. They were happy, my Mum was happy and I was happy. So I've treated myself quite a lot this week for being a good patient, maybe I'll show you soon. But there won't be any outfit posts for a few days due to an unfortunate incident late last night involving me, a pair of scissors and my fringe (when will I learn??)

A Bit More About Me

I suppose I should say a little more about me and my CF, since everyone's experience is so different. I was diagnosed at 2, after my mum was told again and again there was nothing wrong with me. This seems to be quite a common story, things are so much better nowadays, they're more on top of these things! My earliest memory is being in hospital when I was about 3 or 4 to get a portacath fitted. This is in my right side and makes IVs so much easier so I love it. I also had a gastostromy tube put in my stomach, I have less love for that but I'll explain another day.

Other than the odd hospital stay over the years, I haven't had to be admitted that much at all. I'm so lucky because my Mum learned how to do IVs so we could do them at home, something I'm so grateful for. I've since learned how to do them myself, which has been brilliant because it means I have so much more independence. I go on IVs every three months or more if I'm ill, but I'll write about that when I'm actually on them. When I don't have them, I really don't want to be talking about them because to me they're the most boring thing in the world after Adele (I'm sorry, I know everyone loves her but her music makes me wanna sleep!)

I think other than having IVs, CF didn't affect me too much when I was little, I don't remember missing that much school. I think it was when I was around 13/14 that I started to miss school loads, which was down to a whole mixture of things, including having an operation for a curved spine which I'll talk about more later (so much to look forward too haha!) Since then, I don't think I've been the same since, even though compared to a lot of people with CF I think I'm fairly healthy, despite frequent chest infections. Can't remember my most recent lung function off the top of my head (useless I know!) but I think it's around the 50's. When I'm ill this goes down to the 40's. 

I won't lie, I'm not too good at the exercising part, I'm a bit of a yo-yo exerciser. One month I'll be really good then the next I'll be absolutely rubbish. I do take my medication though! Click on the treatment tab above if you wanna know what I take, it's kind of too long for me to go through again.

I think that will do for now, this has been a bit of an overly long post. I'm just putting off that essay still!


I've started this blog mainly to write about living with Cystic Fibrosis (CF), and partly to put off doing a 3000 word essay due in four days (eeeeeeee!) til yet another day.  Not sure how interesting this is going to be, but it's more for me than anyone else. Could write stuff down the old fashioned way with a pen and paper, but I guess I'm too lazy. In case anyone ever does read this, here's a few things about me:

My name is Niamh Nelson, hence the very original blog name, and I am 18 years old. From London.Currently at university doing American Studies. Only been here a few months, but loving it so far! As mentioned, I have CF, if you follow this link you'll find all the medical facts. Not too good at explaining that part, a bit too sciencey for me. (Am also just as useless with computers. Promising start for a blog about CF isn't it?) But I suppose if you have CF, that's not really what you think about most of the time. When you're ill it's like 'Eww I feel like crap, now I can't go out tonight, it's not fair' etc, you're more thinking about how CF is disrupting your plans for that day or whatever rather than the scientific part. I only ever think about that when a doctor is explaining something to me, but even then I zone out a bit. I just take my meds as I'm supposed to, not too concerned with exactly how they work, just as long as they do the job! Saying that, I'm not completely clueless, I do know what each tablet is for and how to take them and all that!

So yeah, that's all for now!

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