Showing posts with label CF. Show all posts
Showing posts with label CF. Show all posts

On Embracing Scars

A Royal wedding dress reveal is often a rather exciting moment for most fashion enthusiasts, but for me seeing the photographs of Princess Eugenie in her stunning Peter Pilotto and Christopher de Vos gown felt extra special. 

From a fashion perspective it was wonderful to see a British label given such a platform (talking of which she also wore Charlotte Olympia shoes for the occasion.) There's no doubt it was a beautiful dress - the full skirt, the folded neckline - but to see the long, thin scar, a result of spinal surgery for scoliosis, pointedly peeking out from the deep V back showed the power of dress and meant that for me it was far more than a moment for fashion. It was a moment of empowerment for everyone else with similar surgical souvenirs. 

You see I too bear that same scar, as I had the exact same operation aged 14. They straightened my twisty spine and fixed it in place with twelve bolts and two titanium rods and after a painful, but thankfully brief recovery, off I went to enjoy life all straight and proper. If it wasn't for the scar that snakes up the entire length of my spine to be honest I'd quite forget I had it done, especially taking into account lung transplantation surgery almost 10 years later.

Which brings me on to the scars from that. We have the obvious one that goes from side to side across my chest where the surgery was performed. I have two scars on each side of my ribs where chest drains were inserted (one looks a bit like a star which I'm quite fond of.) Alongside the one where they put a tracheostomy (breathing tube) in, I have the ones on my neck caused by ECMO (a big life support machine with equally big tubes) and then two scars on my legs where they had to put ECMO in there after the neck one didn't work. There's the one where I had a feeding tube in my stomach and more in my neck and on my side where a port sits under my skin, as well as various scars from all the cannulas, blood tests and whatnot from over the years - there's a lot going on, sure. 

Of course I knew I'd have scars but seeing as there were no mirrors in hospital I was quite unaware of just how much my body had changed. It wasn't until I was getting dressed in my bedroom and caught my reflection in the full length mirrors of my wardrobe doors that I was confronted with this new, stark reality. It was shocking to me, to see the full extent of what my body had been through - it looked so violent, I didn't recognise myself. To be frank, I felt grotesque. Perhaps not the right thing to think after almost dying, but that's how I felt at the time. 

However, after the initial shock had worn off I began to see them as a sign of power and strength. They were a mark of all that I'd been through, a tribute to the magic of medical science and a specific reminder of the type of surgery I'd had that saved my life. Incredible things! Beautiful meanings!

Time has faded my scars and most are hidden by my clothes. They're not totally on show here either mainly because the most obvious ones are in awky places but they're there nonetheless, attached to stories that are a part of what makes me, me. Perhaps it's my love of a good novel, maybe it's the history geek in me or narcissist, depending on your view, that revels in the idea of a narrative being revealed through the strange marks on my skin. They still cause me occasional pain due to scar tissue and other parts are completely numb years later so they're not without problems. However much I think they should be normalised and without wanting glamorise them, I firmly believe we should be proud of our scars - from the ones from major surgical procedures to the little burns that nipped the back of your hands grabbing a pizza out the oven, they're a reflection of our lives rather than the airbrushed, flawless bodies traditional and social media bombard us with. 

So to see Princess Eugenie showing her scar on what was probably the most public day of her life was empowering to see - a small but mighty gesture. From the numerous tweets I saw that day to the excitable message I got from a fellow lady who's had scoliosis corrective surgery ('We are matching!') I know for sure I wasn't the only one moved by it. 

Two Years

This week I hit two years post transplant - two extra precious years that I'd never have had if it weren't for a very special person and their family. Because of them I've got to spend more time with my family and loved ones, as well as meet so many lovely new people too. Things are so different now, life is wild. Hand on heart I wake up so excited every day because I can't wait to see where the day will take me - it's definitely taken me on some adventures!

I speak sometimes about life not always being a smooth ride post transplant but that's ok because it's all worth it. It's not about trying to avoid anxious feelings but acknowledging them. From talking to others it appears that it seems to be part and parcel of post transplant life. So much of society suffers from anxiety and depression without having the added pressure of transplant and CF, I think I forget sometimes that they're not common things to happen to a person. I can be quite immersed in that world due to growing up with it, being in hospital and having lots of amazing transplant/CF friends which means I think that often I normalise it. I have to remind myself to take a step back at times and look at it from an 'outsider' point of view, then I realise that it's actually a huge fookin' deal! I still have bouts of depression now and then (February to April was really difficult) but on the whole I'm still having so much fun and am starting to be kinder to myself. Physical health issues have popped up in the last year but these lungs are still doing fabulously and are taking me places I'd never been before. It's been so great to progress in life rather than being stuck in the mud (or with sticky lungs) like I used to.

I still feel the same sentiments I'll link it here if you'd like to read. as it sums up all the feels - it's a quote from Lupita Nyong'o and although she was obviously talking about something else I felt her words were very relevant:

'It doesn't escape me for one moment that so much joy in my life is thanks to so much pain in someone else's.'

So here's to my donor and their family, who I think of daily but particularly more this week and sending all the love and gratitude. It's a cliche but there really are no words to thank them for what they've done for me and the opportunities and experiences I've had thanks to organ donation - the gift they've given is truly priceless and I'll be forever grateful. 

Film Club | McQueen

I watch a lot of films and documentaries but I don't really talk about them much on here - however, I feel differently about McQueen, partly because of still seeing people say 'But wasn't Alexander McQueen a misognist?' (yawn, yawn) and mostly because I just love him.

The documentary is a celebration of his genius but it's also a grim reminder of the pitfalls of fame and the pressure of the fashion world, set to the backdrop of a beautiful score - a mix of interviews, home video footage and news reports it's composition isn't too dissimilar to Amy. I'm a huge fan but I feel I left with a greater understanding of him, so I think maybe it's a good watch for people who perhaps don't like him quite as much. I think they'll certainly see that he wasn't a misognist at all in any case! And you realise how extraordinary his life was, at about my age he was in charge of Givenchy and also running his own label - can you imagine the pressure? It also has really interesting interviews with people like family members and fashion insiders we don't neccessarily hear from often, so it feels even more intimate than you might expect. Fashion loves a myth but it was really interesting to see a more 'human' take - it was really moving and I certainly wasn't the only person who left the cinema crying. It made me even sadder we will never get to see what else he could have done. 

I was quite young when I found out who McQueen was and by then he was doing what would be his final collections, but he still had a profound impact on me. Growing up, I felt like my love of fashion and all the joys of CF (multiple surgeries, various scars, being attached to bits of plastic at all times, relying on tubes, plus metal rods in my back from scoliosis just to name a few) didn't sit that comfortably together. Add that with all the normal insecurities of a teenage girl and well, let's just say I never felt very 'pretty' or conventional. 

I remember being about 13 and watching Fashion TV and they showed a clip of McQueen's 2001 'Voss' show and I just remember thinking 'What the fook is all of this?' So I YouTubed it and spent the next few hours glued to the computer watching past collections, falling completely in love. I used to love Chanel, Dior, Valentino, which were often quite traditionally feminine. But here was a designer finding beauty in the 'grotesque' as it were, suggesting that these things weren't actually 'ugly'. 

To me it wasn't about glamourising things like hospital stays and IVs and decaying lungs but more about acceptance - I couldn't change the fact I had to be attached to tubes but what I could do was to try and see them in a different light. It comes down to that whole thing of not being able to control your circumstances but being able to control how you feel about them. In time, although I didn't and don't enjoy all the medical treatment I have to have I can see them as at least being interesting and I can appreciate how fascinating it all is when I think about how something may work. 

Of course it's not solely down to McQueen that my feelings changed but his attitude towards the mundane, about emotions - it all resonates. I really admire how confrontational he and his work was, so unequivocally him. I now don't water down or hide aspects of myself, particularly when it comes to my health. I can be annoyed at the situations CF has put me in, but equally I can look at my scars and think that actually, they're 'fuckin' wicked!' 

A Catch Up

What a rollercoaster month.

Although of course the highs outweigh the lows! I'll share them through some snapshots, as that's cuter. Let's start with the fun stuff...

As you can see, all the very best things! The wedding was sooo beautiful, it probably couldn't have been any lovelier. But in between all of that, this happened too.

An emergency bronchoscopy and biopsy, which is where they put a camera down your throat to check out what's going on in your lungs and they also snip out a tiny bit of them to test for rejection. This is a fairly standard procedure post transplant but I've had a bit of a chest infection and my lung function went from around 80% to 60% which is, you know, not fab. Although it's kinda nuts how my worst currently was my best back in the day when I was a kid! So I had to stay in for a few days and then I was allowed home to do IVs (which you can read about here!) Thank goodness my port is still working, at 16 years old it's well on its last legs but it's still pulling through for me - it's the real MVP! I was put on colistin and meropenem, a real delightful combo that makes you itchy, give you pins and needles all over, dries your skin out but at the same time gives you the worst breakouts and the greasiest hair, dodgy vision, bad dreams and knocks you out amongst other things. IVs are antibiotic drugs that you adminster into your bloodstream, in my case it was three times a day for two weeks. I've not had to do them for nearly two years, pre transplant they were a huge part of my life as I had to do them every three months and then for the last two years before I got my new lungs I was on them almost permanently. So I feel sooo lucky I've not had to do them for so long! I was struggling a bit with the side effects (I swear I never used to, transplant has weakened me haha!) which is why I've been pretty absent from the blog. I'm off them now,  but I'm not 100% so I have three weeks to get better or it's back for another bronch! In the meantime I'm trying to get back to normal so I'll hopefully be back on here writing nonsense as usual!

Tell me about you, how've you been?

Cystic Fibrosis Awareness Month

Maybe it's time to share the real nitty gritty.

I talk about transplant on here a lot but cystic fibrosis, the bastard that caused the aggy lungs in the first place, barely gets a mention. But I really wanted to write a post for Cystic Fibrosis Awareness Month and as we're coming up to the end of it I thought I had better finally publish something.

One thing I feel I should clear up is that although these shiny new lungs don't have CF any more the rest of me does - as if it was ever gonna totally go away, you know how bloody persistent it is. It's still there, lurking around in my other organs causing mischief from time to time but I can live with it. It was when it was in my lungs that it really buggered my life up. To breathe is the most simple of acts for living things to do and when you suck at it life isn't half difficult. I look back on old blog posts and I feel like I was so blasé about it. I knew it wasn't normal but it was my normal, I didn't know any different so just got on with it. Of course I had wobbly moments, all well documented on here to my great embarrassment, but on the whole I felt like wishing for anything different was a waste of time and I didn't have time to waste. Also maybe I didn't want to admit to myself just how bad it was because as much as I bloody hate the whole 'the only disability is a bad attitude' thing there is something to be said for having a positive outlook. 

However since transplant life has changed so dramatically I couldn't even fit it all into one blog post. Now I do know differently and now I have this new perspective on what living with crappy lungs was really like, as if I'm looking from an outsiders point of view. The specifics have slowly faded away over the past two years since transplant as I get more acclimatised to having lungs that work properly. But I do remember the general ways of it and I can see now that it was fucking awful. From the age of two when I was diagnosed up until 23 when I got the transplant it was a chest infection on even a 'good' day but it was x10 whenever I got ill. I had years of pill popping, IV antibiotics, physio, nebulisers, hospital tests, hospital stays all in an effort to just stay alive yet still my lungs packed in, which is just plain rude in my opinion. I don't want to make anyone afraid by sharing this photo again but I think it needs to be as although I look like I've been in a car crash or something all the destruction was happening inside me as a result of cystic fibrosis. It doesn't mess around! but basically the got so fooked they stopped working completely and when the surgeon removed them he had to literally scrape them out they were so stuck to my insides - noice hey? But I'm sharing this because I'm not the first person CF has done this to and I won't be the last, though I was one of the lucky ones who got through it.

Smiling, because I was off my fookin' head on drugs.

I have happy memories, of course I do, but CF robbed me of my early adult life as it decided to really go hard as soon as I hit 18. It's a degenerative condition, so bar IV antibiotics every three months and the hours of treatment I did daily my childhood was relatively healthy. But we always seem to say that, 'relatively' - it's the same when we talk about the life expectancy going up and the average person with CF will live to the age of 47 as something to be celebrated. Of course it is, but that's not very old at all. It's only now being post transplant that I can truly see how unfair that is. 

Life now is beautiful, I'm not exaggerating when I say it's like a dream. Or maybe it's not, because it's greater than anything I could have ever dreamed of. I've written plenty on all of the wonderful adventures big and small these new lungs have allowed me to take but it's important that the reason I ended up needing them isn't forgotten. As positive as life is now these lungs are most likely going to give me a few more years - they come with complications of their own and I won't make 47.  This is fine, I accept that and obviously I'm so grateful for this extra time but it's my hope that one day no one with CF will ever get to that point of needing new lungs. I think that past me would have written a post being a bit like 'I have CF but CF doesn't have me!' Well it did, it fucking owned me and nearly killed me. It was only because a stranger and their family saved me through organ donation that I had any chance of surviving. I always reference Game of Thrones, I think of the Battle of the Bastards. I am Jon Snow being suffocated by CF Ramsey and then I am rescued by Sansa and her men, my donor and the amazing NHS.  Getting to that stage was humbling, when I was sitting there on oxygen 24/7 and literally relying on machines to stay alive I thought 'Ah ok, this is how truly nasty CF can get.' I always thought it was horrid but it really upped the ante here and went Regina George on my ass. 

So I know that this isn't really one of the more positive posts I've ever written but I didn't want to sugarcoat anything - it's a horrid illness and although you can, because you have to, find so many wonderful reasons to love life when you have it it brings a lot of suffering too. Not just to you, but your loved ones also. That's the thing I hate the most about it, I can accept what will happen to me but I don't think I could be so okay with it if it was happening to someone I loved. I have lots of friends with it who are some of the most amazing people I know and it breaks my heart to see what they go through. It's why we have to keep fighting for drugs and research to be funded and that people with CF can live as normal a life as everyone else. 

Or or if you fancy any more information!

The Time Is Now

Hello, hello. I'd say something like long time no speak but in the grand scheme of things I guess it's not been too long at all. 

But how are ya? You good? I'm alright, I am now anyway. I wasn't for a little bit but I'm in such a happy mood currently and I'm feeling much more like my old self. I thought it'd be nice (and also a way to save £££ on therapy) to get the *feelings* down, even though God knows if anyone still reads an old fashioned blog these days. However I felt like this was only marginally less embarrassing than having a breakdown on YouTube...

Uni Week 6: Relating To Royalty?

By the time you read this I will probably be at home! It's Reading Week and I've been so looking forward to it. I obviously am looking forward to seeing everyone again but I won't lie to you, I'm super psyched to see my Freddy-Boo-Dog again. He'll probably sulk and ignore me but I'll force him to be my friend. I can't wait and I know that secretly he'll be excited too even though he'll never admit it. 

Uni: Week 5

This week has been all werkwerkwerk. Kinda forgot about all the essays and presentations I'd have to be doing when I got here hahaha. I have Reading Week soon so I have a week to get as much stuff done as possible because I really don't fancy spending my week at home working because time spent with family and friends and Freddydog is something I'm definitely not going to compromise on! Alas I have decided to get ill again this weekend, which is just brill.

Uni: Week 4

This week has been about trying to get back into the swing of things after last week's little blip, hence the radio silence heree. I settled back into my uni house quicker than I thought I would after a week of home comforts but I'm really missing a decent kitchen/living area and a bath! Student houses are not the one.

Uni: Week 1, 2 & 3

I thought I'd start a new little series documenting life at university as a mature student juggling a chronic illness. I did a year of uni back when I was 18 and because I couldn't find much info other than 'It was the best experience ever!' and 'It's totally doable!' All very encouraging stuff but I needed to know about the practical things such as any help I might get or tips on how to keep up with the workload. I left uni after a year because I didn't like the course or university very much so didn't feel it was worth carrying on with as at the time my health started going a bit dodgy too. However this time round I'm doing something completely different at a different place that I absolutely love and of course I have new lungs too so I feel like this experience is going to be so much better! But again I couldn't find much info on doing uni with CF post transplant so maybe this will be my blog's niche hahaha. I'm no expert, I'm just learning as I go along, but hopefully someone may find these posts useful! I'm planning on doing these weekly but today I've had to cram three weeks into one but you'll see why.

A New Adventure!

Tomorrow is my first day of uni 2.0...I originally started this blog back in 2011(!) to document life at university whilst living with cystic fibrosis. Ironically CF put an end to that venture and as well my heart just wasn't in it, but as you may knowso now I'm attempting it again doing a different course at a different uni. There's absolutely no way I'd have guessed how things would turn out back when I began this blog! This is like a new beginning in a way and if, like me, you like things being neat and rounded my first day at uni (tomorrow) is actually exactly two years to  As someone who likes matching socks, even numbers and a colour co-odinated wardrobe I find this weirdly satisfying! On that day I was sitting in a wheelchair on oxygen - if only I could go back in time and tell myself and everyone that everything would be ok! I'll still be blogging about life at uni with CF but obviously this will be a bit different to before as although I'm sure it'll be very challenging still I think there'll be fewer difficulties this time round. I'm so excited!

Of course I'm using as my student card pic 😂

Transplant - One Year On

Actually one year plus a bit more, but for someone who rambles a lot on here I was struggling to write this post. Also I try and keep the actual date quite vague for ethical reasons as I don't know anything about my donor or their family so it's out of respect for them. For those that are curious, as I've had a few people ask, I did send a letter a while back to the family which was really important to me as I wanted to thank them and let them know how grateful I am. I've yet to receive a reply but to be honest although it obviously would be lovely to know about them, if I never do that's ok as I could never ask them for anything more as they've given me so much already. They have given me, a total stranger, life. How bloody amazing is that? So for I really wanted to write a post celebrating that in honour of my donor and others who have given people like me a second chance of life as they're all total superheroes. You may wanna grab a cuppa and a snack too as this will be a long 'un but hey, it's Sunday! Hopefully you're doing nothing more than slobbing in your pyjamas and watching Sunday Brunch.

The Happy List #26

Ok so first of all I just want to say a big thank you for your lovely comments...I was super nervous about posting it but in real life I think I just blurt things out (I wish I didn't) so I suppose it's no different on here! But if it helped anyone going through the same thing, then good. I thought I'd write a Happy List to prove to you I'm not really a miserable bastard even though I am a bit because I should be in Spain right now but decided last minute not to go because I was just feeling really off. After a year of excellent health my body is back on its bullshit but then again, I've had a year of excellent health. Not since I was diagnosed with cystic fibrosis aged 2 have I had an entire year off antibiotics either IVs or tablets and that's something to celebrate and be thankful for. Over the past few weeks Harefield did all the tests but discharged me as an official medical mystery. I had a sense of deja vu because of all the weird symptoms so readbecause I write about all the *exciting* things that happen to me and now I feel like House himself because I may have solved the mystery that none of the doctors could solve after two weeks of every single test, even my discharge letter said 'inconclusive'. I'm half proud but also half scared because I don't want to wake up one morning with a giant ankle, especially as we're coming up to boot season. Plus I kinda don't wanna be allergic to any of the drugs I'm on as they're rather important so I'm hoping I'm just jumping to conclusions. I shall phone the doctors on Monday!  But anyway, onto the Happy List!

The 'pub' in my brother's garden named after the one and only Baby Florrie

An Honest Chat About Mental Health After Transplant

So yesterday I had a meltdown of epic proportions that would shame herself (or make her proud, I'm not quite sure actually.) The irony of getting upset about being ill making you even more ill so you end up in a ridiculous circle! Transplant doesn't magic away all of your problems, I still have CF so have some of the same issues and am now faced with new ones too. Of course life has improved so much, I'm so grateful to be able to do more and have this extra time so I think some people may read this and think I'm being so bratty! But I think it's important to talk about, so I will.

Where Are The Good Vibes?

I won't even lie to you, I'm feeling a little bit fed up. I'm not as patient as I was pre transplant but to be honest that's not surprising. New lungs are a second chance at life but I know I'm living on borrowed time's not a negative thing, because I think it's given me a bit more of a get up and go attitude, I complain but really give less fooks about the state of my hair and face and it's made me braver. However I feel like every day I need to be doing something and making the most of it and when I can't it feels like a waste and I feel a bit anxious. Some people say 'Oh but what's a week of your life?' Quite a lot longer for me than it is for you actually, kinda like how one year for a human is seven years for a dog hahaha. 

A Mini Blip

Ok, so I might be making it sound more serious than it is but I am in Harefield Hospital currently as I came back from Ireland with a temp, headaches, extreme fatigue and a slight drop in lung function - boo! Although in all seriousness I was feeling very crummy and a little worried about it too to be honest and I never really worry about health things. I don't see it as something I have much control over other than how I feel about it and I don't worry about stuff until last minute when I have to - like I didn't worry really about end stage CF until I was in the literal end stage on life support and thought 'Oooh crap, maybe I am in trouble here!' hahaha and then I think I had a breakdown which was fun. There was a bit of hassle getting a bed so I think that this got left for far longer than it should have (although my CF clinic were absolutely brill, as always 💜) but saying that this isn't all Harefield's fault, they just don't have the money and resources that they deserve which is so frustrating for patients and staff alike. However that's a rant for another day! This post is all about me, lololol.

cystic fibrosis, lung transplant, post lung transplant, bronchoscopy, lung biopsy, harefield hospital
Looking rough but I'm not a morning person ok?! Am not used to these 6am wake up calls haha!

The Happy List #25

So the last week has been pretty was also jam packed so I feel like I could sleep for a thousand years haha. So this is gonna be a long one! Tomorrow I'm off to Ireland for a week to visit my grandparents, due to the whole being ill/transplant thing so it's going to be so special to go back and explore with these new lungs of mine - I can't bloody wait! But here's what's been going on lately.

Dream house in Brighton

The Happy List #24

liberty flower market july 2017

Hi! So this week has been really, really great - I feel like I say this every week but that's no bad thing. Obviously there's bad moments that happen too but there's no point on dwelling on them because the way I see it I'm only here now because of somebody's last amazing act on earth. I plan to live for both of us and literally every moment for me is so exciting because I shouldn't be here now. If I were to spend the rest of my time being negative and unappreciative how ungrateful would that be? The chance I've been given is so rare and precious and it's a shame that some people just don't understand that. So I'll keep on being super happy about life because I'm so lucky and by celebrating life I'm celebrating my donor. It's a shame some people are completely missing the point and think I'm showing off or whatever but never mind. I know I've mentioned it before on Twitter but just thought I'd clear it up in case I'm coming across as braggy haha. On to the happy things! 

1. Being on the TV and radio. On Tuesday I was discussing organ donation with Sally Johnson, who is the Director of Organ Donation and Transplantation, on some local BBC radio stations and then the Channel 5 news in the evening. It was all live so I was totally out of my comfort zone but I just hope I helped them out in some way and didn't let anybody down! I still can't bring myself to watch it though, there's a reason I don't do YouTube haha! What an experience though and everyone was super nice. It's bloody fab that 50,000 people are alive in the UK today thanks to organ donation and the amazing selflessness of others but the sad fact is on average three people a day due to lack of donors. Please, please consider signing the register and having that conversation with your family to let them know your wishes.  

2. The best bargain ever. Ok well what I bought was still expensive but not compared to what they should have been! I have a post coming up on this so keep your eyes peeled. 

3. Charity shop haul. I always buy my books in charity shops but never really considered looking at the clothes but I found some right gems! I didn't try it all on so some of it doesn't suit me so I'll be donating them back but as everything was only like £1.50 it doesn't matter and it all goes to the British Heart Foundation - a cause that is, well, close to my heart! But I'll be showing you what I'm keeping soon. 

4. Time alone. My parents are on holiday (but back tomorrow yayayay) and while I've missed them I've been using the opportunity to Get Shit Done as I have no distractions (my mama and me always end up going out for lunch or shopping haha!) Mainly blogging stuff, I *think* I'm kinda going back to the kind of outfit pics I used to do but I get bored easily so that may change soon.

5. Liv and Lucy video. Absolute dream team! Two of my favourite bloggers made a vid on Olivia's channel, check it out here because it's so bloody good. Who doesn't want to see inside the wardrobe of Lucy Williams?  

6. Shoreditch night out. I couldn't stay for long and well done me for not getting silly drunk but still had the most fun! I thought it'd be awky as I only knew one person but it was actually great. We went to the Nomadic Community Gardens which is a really nice place to hang out on a summer eve.

7. Tidy room. Like it's so tidy I love it! I had a huge clearout and it's just lovely having so much space. Goodbye floordrobe!

8. Tickets for The Killers. They're a band I've loved since I was like 11 so I'm mega excited, you have no idea. It's not until November but I'm counting down the days!

9. £5 dream dress. I'm not sure I can pull it off or if it's a bit Halloweeny but in my head when worn with a leather jacket and long boots it's a bit Kate Moss/Florence Welch-esque if you squint hard enough and use your imagination haha. I've not bought off of Boohoo since I was a young teen but they had some surprisingly nice things onsite. I got the black (obvs) but it's also in khaki. Available here

10. Alexa Chung and me becoming besties. Ok not true but she liked a pic on insta and I think that makes us BFF's now (just let me have my moment please haha!)

How was your week? Was it fun? Tell me what the best thing about it was! 

A Song For Tomorrow

I've  been meaning to review A Song For Tomorrow by Alice Peterson for a little while now but while I hate to sound wanky I just couldn't because it all felt kind of raw. I'll start off by saying that it's based on the life of Alice Martineau, a singer who happened to have cystic fibrosis which is why I felt such a personal connection to the book. However it's also a bloody good read, maybe not my usual thing but I bought it on the day of release and practically devoured it.

It's been compared to The Fault In Our Stars and Me Before You but whilst the characters in that are annoying af Alice is not. I remember watching a documentary on her as a kid and I just thought she was so cool - wickedly funny and talented and I'm not just saying that either (I mean if she wasn't that fab a book wouldn't have been written about her no?) The book follows her journey as she tries to make it in the music biz and meets a lovely new fella Tom around the same time CF decides to be a major dick and she is placed on the list for a double lung transplant.

One thing I really appreciate about the book is that you can tell how closely the author worked with Alice's loved ones and also the CF Trust. I obviously can't speak for everyone but personally I thought it was the most accurate depiction of CF I've ever read by someone who doesn't actually have it. Not everyone gets it right (Bates Motel, Grey's Anatomy, Holby City I'm looking at you) but I think Peterson got it so right when she describes not just the physical effects but the emotional too. I related so much to Alice's worries about relationships, what other people think, holding others back and most crucially, not having enough time. That in particular is something people don't seem to understand, especially now I've had transplant. I get told off for being 'morbid' but I see it as being realistic and like Alice, prefer to use it to push for the things I want out of life. There was a quote in the book, I can't remember exactly what it said, but it was along the lines of CF forcing you to grow up from a young age but at the same time robs you of so much independence. SO ACCURATE. Alice's closeness with her family and yes, also her occasional frustration with them, was something I felt closely mirrors my own life too.

I found it to be a hard read, obviously now with these new puffers of mine I can breathe easy (lololol that was just for every other person with CF that wants to vom when they read that) and while I hadn't forgot what that drowning feeling feels like I guess I just hadn't thought about it for a while. As if I needed reminding, I kept thinking again how bloody lucky I am to have got my new lungs and my heart broke for Alice's family and friends. I think they're so brave to have helped this book become a possibility. I think it's a fitting tribute to Alice's extraordinary life.

The Happy List #20

so I thought I'd resurrect them on a Sunday! I feel like I've been out loads lately, it's been fun making up for lost time but maybe I need to slow down a little and find some balance because I feel a little bit rundown, plus I'm poor af right now hahaha. But I just get bored so easily so need a focus until I start uni so why not try and blog a bit more! I always feel a bit weird in the summer so it'll be kinda nice to have something to concentrate on. The thing is as well I've not been blogging much because I've been feeling so disconnected from it all and I just find the whole thing to be so weird sometimes. I'm happy doing my own thing but every now and then I feel a bit unsure of my place in this blogging world and I don't like this uneasy feeling, then again it's how I feel most of the time every where else anyway. But for now I'm happy just feeling like 'whatever' about it all and I'll just do me - it's all you can try and do innit?

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