Showing posts with label Lifestyle. Show all posts
Showing posts with label Lifestyle. Show all posts

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. 






A Week in Pictures #1


Well, almost - it's six days, so it's near enough! Remember when everyone used to do these posts? I loved them, so thought I'd bring them back on here.

The Sunday Natter | On Difficult Friendships





It's been a funny old week - a health scare for someone I love very much perhaps made tensions high so behaviours from others that I'd usually ignore or make excuses for haven't been as tolerated as readily. I feel like sometimes I choose to not say anthing to keep the peace but this isn't always good because I don't want to be someone's proverbial punching bag or ego boost. When people do this I know they're only trying to bring me down a peg or two to make themselves feel better, so the problem lies totally with them. I know I for one don't feel like being very kind if I'm not feeling happy myself, which is really silly but human nature in a way. But I don't think that makes it ok.

I don't know if it's because I've been extra sensitive lately - to be honest having to go back on IVs for the first time since transplant shook me up a bit, when I was in hospital it meant I missed my exam and the last couple of weeks of my first year at uni and it's also super close to my two year transplant anniversary so that's been bringing up a lot of teary feelings too. So I've probably been taking little comments people have said to heart more than I might usually do, which I'm bearing in mind.

But the good news is I finally got to see a counseller at my transplant hospital after a year and a half of trying - perserverance pays off, friends. They originally sent someone to see me when I was in hospital but they came literally as I was high AF after my bronch. They asked what was bothering me but because I was quite off my head I was a bit like 'You mean in life? No, no, I'm mad fer it!' So they left me to it and sent someone else a few days later. At first I felt mega stupid and whiney, I was cringing so hard at myself but the person was so lovely and understanding I reckon I might actually get somewhere. They said the main thing I have to work on is being kinder to myself, I can be quite self critical even down the point where I blame myself for having a difficult recovery after transplant which is ridic because none of that was my fault at all.

So I think it will be helpful to sometimes maybe call someone out if they're saying something that's unkind towards me or to cut ties with people who don't really have anything nice to say to or about me. One big thing I've noticed is that silence speaks volumes and if your pals aren't celebrating your successes then they're not your people at all. Friends should call each other out when someone is being a dick and they should be able to take the piss but equally uplift and support one another and make each other feel like their best selves. I'm so lucky to have so many amazing people in my life who do just that that I'm even able to recognise when someone isn't and see it as being rather odd, but it doesn't make it less hurtful. Like I said, it generally says more about them than you but that doesn't mean it's something you have to tolerate - sometimes you have to put your own wellbeing first!

I'm worried this post totally comes off as a bit 'high-school' but navigating friendships can be tricky, particularly as an adult because our time becomes much more limited. But I guess this means it's all the more reason to hold on to special people as life gets stressier and to maybe cut off sources of negativity and unnecessary anxieties.

We get told so much to know our worth when it comes to romantic relationships but I think it should be applicable to platonic friendships too, as they can be just as intense! Make sure to surround yourself with the good eggs. 



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?



Postcards from Paris - Day Two




Il n'est jamais trop tard...

...well maybe five months late is pushing it a little, but after reading (make sure you have a read as she writes a beautiful, beautiful blog) I was reminded I still had the second day of my trip left to share You'll have to excuse the Christmas decor in some of the shots but I'm quite keen to share some more of the places I visit on here and indulge in my nerdy side. But who knows, you might enjoy reading about them too! I'll try to keep these posts brief...

Notre-Dame de Paris



My photos totally don't do it justice but the Notre-Dame Cathedral is stunning. I was completely blown away by the sheer scale of it and the detail of the the exterior. I very much like the more is more approach to Gothic architecture and this didn't disappoint. We were expecting major queues but to our surprise we were able to stroll right in, which I'm told is quite unusual! The inside didn't disappoint either, it was absolutely packed but that didn't take away from the experience at all. If you find yourself in Paris it's well worth a visit!

Sainte-Chapelle


Seeing as it was just a short stroll away we also visited Sainte-Chapelle which is another incredible Gothic building. Weirdly there was a longer queue for this than Notre-Dame but the wait in the freezing cold was all made worth it because the stained glass windows just blew us away. It's overwhelmingly beautiful and something I'm so happy I got to see. 

We were in Paris when Colette was closing but the thought of how busy it would be didn't really appeal to us so we visited , a beautiful concept store on boulevard Beaumarchais in Haut-Marais. Obviously Paris is full of fashionable shops but what makes Merci different is that the profit actually go to charity, which I was quite amazed to find out as the items are all on the pricier side so it was unexpected. However I was very good for the whole of the trip actually and didn't bring back anything with me apart from some wonderful memories. It was my first visit but surely not the last! I'm absolutely desperate to go back one day, there's still so much I would love to see.

Have you been to Paris? 









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...

To My Valentine's



WELL. It's been a little while, sorry. Uni work and a wobbly brain has got in the way but there's been fun stuff too so it's not all been doom and gloom (although I sent my pals Valentines not realising we were no longer doing this now they have significant others so guess who feels like a loser now!) But it's fine, I bought some new dresses so whatevs. and mainly why you should love yo'self but I thought seeing as it's V*lentine's D*y I'd talk about the amazing gals in my life.


10/01/18 | Nothing's Gonna Touch You In These Golden Years


I remember exactly where I was when I heard of David Bowie's passing. I was in the High Dependency Unit at hospital, in limbo after being told I needed new lungs but not yet knowing if I was able to be listed. In short, not a Good Place. When I was thinking so much about my own mortality the fact that one of my idols had gone so suddenly was a huge shock, it was too mortal for someone so extraterrestrial. I felt so numb, which was weird because I'd never felt like that over the passing of a celebrity before.


Except Bowie wasn't just a celebrity, he was a true icon to me and so many others. I grew up listening to him as my mum is a huge fan, I remember looking at her records and being in awe of this strange man with the different coloured eyes. His music brings back so many memories of childhood, from singing along to Sound & Vision in the back of the car to bopping around the living room to China Girl when I thought no one could see me. Doing the dance to Golden Years from A Knight's Tale with my friends in the playground and practising my catwalk to Fashion (again, when I thought no one was there!) Of course Labyrinth must be mentioned. As I got older I began to appreciate him as a person too. He showed us it was ok to be a bit strange and different, as someone who always felt like (and still do in many ways) I don't quite always fit in with the crowd it was comforting. The press vilified him in the early days but still he carried on doing his thing.

So I sat there in HDU feeling heartbroken yet at the same time thankful for the joy he provided me over the years and for the many hours I'd spent escaping whatever stress was going on in my life by listening to his music. I decided that if I got my second chance at life I was going to try be a little more Bowie - live how I wanted to and worry less about others opinions. And that's exactly what I'm doing now I have these new lungs! So thank you Starman for inspiring me to live my best life. I think we could all try and be a little more Bowie.

xx

08/01/17 - 'I'm just a girl, standing in front of a mirror, asking it to love her.'



I'm in a bit of a chatty mood aka procrastinating wildly - but I've decided to turn this blog back into a little diary that I'm going to try and do daily because I'm too lazy to do my actual real life journal. I know it's *supposed* to be all quality over quantity in blogging but actually the number one rule is to enjoy it. I said in my January Goals I wanted to do some writing purely for me, even if it is just something silly - in fact most of these posts are silly, I don't think I've ever offered any wisdom on here but that's ok as it's better left to people are who are better at articulating their thoughts. But I'd rather just document my life the way I used to blog and if anyone likes it then that's cool but it's also cool if not because at least I have a lil online scrapbook to look back on!

Hat Nine by Savannah Miller () Coat Jeans GAP customised by me Shoes

So I came back to Brighton on Friday, the fridge had been turned off so everything was rotten but other than that mishap all is good. Sunday was spent feeling v sad and ill and tearful until I realised it was just because of an iron infusion I'd had at Harefield last week then I felt ridiculous and snapped out of it. Bloody drugs! Don't do em kids. But today was better, I was at the library which is now open until MIDNIGHT - this pleases geeky me immensely. I swear to God every time I go to the library I see at least three people from my course on the verge of a nervous breakdown. But me, I had to research a guy called Demetre Chiparus who was apparently 'one of the most important sculptors of the Art Deco era' according to Wikipedia. I declare this a lie because if it were true I'd be able to find more goss on him and I fooking can't. But in more successful news I submitted an essay that I've been working on for months and although I'm glad to see the back of it I get more worried than I used to about handing stuff in - I feel like they'd be reading it like 'Wowowowow, 24 and still an absolute dumbass' hahaha.


Before I go I'll just leave a link for if you too fancy donning them with a beret

xx

January Goals



but I have goals that are more specific for this month too. Actually I don't see why they're particular to January but never mind, here they are!

Postcards From Paris - Day One



Just before Christmas I went to Paris, I may have mentioned it once or twice. It was a big post transplant dream and I was lucky enough to squeeze it in before the new year! My mama and I were only there for two days so obviously didn't see everything but I loved every minute and already can't wait to go back. I also really, really want to go to Versailles more than anything! Here are some snapshots from the first day of our short but sweet visit.

Hello, 2018!


Happy New Year gang! Been a little while innit? I hope you had a lovely evening whatever you did, we had our usual party but I was in my jimjams at 12:05 - the benefits of having a party at home, you get the best of both worlds. I am now eating chocolate yule log in bed, starting the year as I mean to go on.

Blogmas #2 & #3: uni week #10


Way too many hashtags in that title. What a joke I am, I failed at Blogmas on day two - this is surely a new record for me? But in my defence I had the worst migraine yesterday. Sometimes I feel like whenever I say I'm going to do something, especially blogging related, my body is like 'Nope!' I definitely jinx myself haha. But anyway, it's been a while since I've done a uni update so here's the latest although not much has gone on.

Blogmas #1: December Goals



I gots Christmas on the braaaain. Seriously I'm like a child, literally actually because I've spent the past hour trying to choose what Sylvanian family to get Baby Florrie. How those things passed me by as a child I do not know, they're so bloody cute! but now I think , wahhh. Florrie will like either, this is totally for my benefit when I come round to play with her toys hahaha. I'm completely digressing but that's because I have failed on all of my and just wanna skim past that...to be fair I've been ill (woop to those cf and post-transplant problems!) and I've been sleeping every spare second away but honestly, it's like December has hit and I've sprung into action because Christmas is my JAM. I totally get it's a difficult time for so many people and we know it's materialistic etc etc - but for me it's about spending time with loved ones and I have so many fun memories of this time of year. After transplant it feels even more special and I'm so grateful to my donor for giving me another Christmas I wouldn't have had if it weren't for them (it goes without saying I think of them and their family even more so now.) So I have a few festive things I'd like to do this month and here they are:

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. 


November Goals



Well I'm pretty pleased with myself because I didn't do a bad job at all at keeping up with my October Goals. I didn't slack on the skincare front and I've definitely been focusing a bit more on myself by surrounding myself with the right people. The one thing I didn't do too well on was keeping a blog schedule but that's not surprising I plan to rectify that this month, here are my other November Goals...


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.

October Goals


Hallo! I hope you've had a good week. Mine has been somewhat manic what with moving to Brighton and starting uni but I've loved it so far, I honestly don't know what I was worried about. The people have been lovely, the place is beautiful and my course is super interesting! I have the cutest walk through The Laines to uni and I feels lucky. The only downfall was a fly problem in my room when I got here but Mr Pest Man has sorted that so now all is well. I'll definitely do a room tour once I've made it a bit more homey!



Even though I think I'll be a little bit busy I still have some goals for October...

1. Sort my hair out! I mentioned before that after transplant due to a mix of medication and a big surgery my hair went a bit nuts and started falling out. Not majorly so compared to some but my hair was always so thick so it was a big deal for me! It's started to grow back which I'm so happy about but it just means that the length of my hair is all uneven - basically I look like I've had a bad extension job hahaha. So I need to get myself a decent haircut because right now I can't do anything with it but whack it up in a bun! I'm thinking a bob is the way to go but we shall see.

2. Keep up a skincare routine. I'm lucky that my skin is quite clear but this means I can be lazy with keeping a routine - however after sticking to one for the past month I've noticed such an improvement so I want to not let it slide! I'll do a post on the products I've been using as they're all really affordable and not tested on animals so winner winner chicken dinner (or not, I dunno.)

3. Focus more on me. I'm not saying I want to be totally selfish, I just don't want try and please everyone all the time. I started this already and it's so liberating! No more people owing me money and never getting it back, no more people borrowing my things and ruining them, no more letting people make me feel bad when I'm just being myself instead of who they want me to be. I've had to cut a few people out too but that's life, I don't want to spend it feeling drained all the time. Quite a weight off my shoulders really!

4. Try to keep up a blog schedule. I have so much to post including stuff from the summer but I haven't gotten round to it yet! It may not be *seasonal* but I much prefer just blogging about what I want to blog about, old school diary styley. Hopefully someone out there will like it haha!

Do you have any plans for October? Other than Halloween fun!


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