Sunday, 26 July 2015

Panda Sex and Posaconazole

Just because it's my favourite card

I've just had my 2 and a half year anniversary since my transplant! Hell yeah.

I've tried to stop thinking about how much (or how little) I have achieved in that time, to stop comparing my journey to other people's, as it's utterly pointless. I'm happy about how much i've achieved, also annoyed that I haven't done more, but I guess most people are like that, always hoping that they could've done more with their time, to squeeze every second out of every year, when in reality it isn't always possible. I love downtime as much as I love exciting adventures, and I guess looking back i've had a mix that has suited my health well.

I thrive on being active - the times i've been working i've been extremely well and have felt fantasic and full of energy, but that energy is finite, and after a few months I need to rest. I've been kicking myself a bit for not having found a full time job yet, but realistically I don't think my body is up to full time, even now. I'm wondering if i'll ever have the energy to work full time for a long period of time, because after 3 months if I don't stop, I know i'll need IV's. So after 3 monhs I stop, rest, and start again. And i've been doing really well with that.

I've been off work now for a couple of months, now applying for jobs and paid internships again, mostly in Literary agencies which I am super excited about! I haven't been completely idle though, i've actually had a very exciting couple of months. At the end of my last stint at Penguin, I asked my first boss, Joel, who is head editor of Penguin General, if he thought this book I had created had potential, and if I should consider doing something with it.
The book is a DIY Poetry book - a sticker book to help create your own poems, like fridge poetry meets Wreck This Journal. I made it at Chelsea Art School, and it has been a part of my household for ages, with visitors and friends coming round and writing poems using my book.
Joel loved it, and put me in touch with some publishers who may be interested, including the poetry guy at Penguin.
The two publishers I met with both loved it too, asked me to expand it, and at this moment in time I now have been made a potential offer, and am just waiting for feedback on how we could physically create this. It's incredibly exciting, and am hoping this may actually be something that comes to fruition in the near future!

My health has been rather up and down - I always struggle in the summer - my puffers don't seem to like heat or humidity or pollen, which the english summer seems to throw at them in buckets. I've been very tight and sticky, with my nights taken up by coughing and tossing. My lung function (Fev1 ie indicator of tightness) was down at last clinic, but i'm not too concerned as autumn is only round the corner *is shot for mentioning the A word*. My liver is great,  however they have found a blood clot in one of the arteries they made to join up my new organs (booooo!). Addenbrookes started me on aspirin, contemplated warfarin and settled on heparin, which I now inject once a day.
The heparin however made it so that my lady time of the month didn't stop when it was supposed to - altogether it's lasted just over 6 weeks now. As well as feeling absolutely drained / dead, I was unbelievably pissed off, as we've spent a year trying to steady my cycle to once a month rather than twice a month / 3 times a month / whenever it decided to show up, which now has been completely shot to pieces. A weekend trip to A+E after the GP was utterly clueless of what course of action would be good resulted in finally getting booked into the irregular menstrual clinic, and a top of iron and fluids to tackle my tiredness and dodgy kidneys. The gynae time I saw on the ward were still a little stumped, as the course of action they would normally take (to stop or regulate periods) were completely out the picture as they would make my clot worse. Hopefully the specialist consultant i'm due to see will have an idea. They started me on a hormone (progesterone) for now which should help, though they agreed with my concern that the tablet is more of a band aid that a solution. It'll be interesting to see what the Consultant of Women's Silly Bits says.

In (slightly) better news, my anti-fungal tablet Voriconazole, which i've been trying to get changed for the fucking longest time, as finally been switched to the slightly more expensive posaconazole. Vori has given me a host of horrible side effects, including the actual inability to step outside in the summer due to burning my skin off (almost) and bursting into flames, even with factor 50. Being on immuno-supressants increases your risk of skin cancer, so I was very keen this summer not have that problem (after all this she dies of cancer?). Vori is also the root of my chubby steroid looking face, which even though is not a cause for change in the eyes of the Brompton, is a huge concern of mine. Apparently when vori as taken with symbicort inhaler, the two drugs create a steroid effect - mainly the accumulation of fatty deposits in the face and body.
Thanks to the amazeballs Su Madge, I have now been on posaconazole for a week, and my chipmunk cheeks have already started shrinking (my stocks!), and i've been out enjoying the summer without transforming into a nicely done lobster. I'm absolutely over the moon! I think the tablets are making me feel sleepy, but the dose results will come back soon, i'm hoping they may just need lowering.

Medical palaver aside, i've had a fantastic summer so far, full of fun and laughs and wine, outings and films and lie ins and Netflix and pizza. I've also started Tai Chi, as part of a clinical trial through the Brompton. I had my first lesson yesterday, with an into tai chi and why they are doing the trial. My instructor was telling me about his excitement that he's finally able to try some homeopathic medicine in the NHS, as it is something very overlooked. The emphasis is mainly on feeling at one with yourself and surroundings, with breathing and posture being a huge element. Anything to do with deep tummy (not upper airways) breathing and creating a solid posture (opening, relaxing) can only be a great thing. It is definitely something I feel hospitals don't focus enough on, physios especially - posture is a hugely important in how easy it is to breathe, and CF seems to breed bad posture, which is so detrimental to lung function and day to day activity. I hope this Tai Chi may help break that cycle of bad posture, and in turn keep my lungs open and relaxed. I can't wait until my lesson next week! (I guess that's still quite medical for my non-medical section! As is my life...)


Hope everyone who reads is having a lovely summer so far too, and isn't too depressed by the size of queue to get into the Nat History museum or the amount of tourists on the tube.




Monday, 13 July 2015

Let's Talk About Texts Baby

All day i've been wanting to go read a book. Hell, all year i've been wanting to read a book. And it always goes this way:

I pick a book.

I read a few pages.

I check my phone.

I check facebook.

I scroll facebook.

I read articles.

I send an article to a mate via messenger

We chat.                                                                                                                        I check Twitter. 

I scroll Twitter.

I read articles.

I retweet.

I reply to whatsapp messages.

I start a whole new conversation on whatsapp.

Still chatting...

Still chatting on whatsapp...

Scroll Instagram

Decide to post a picture

Spend ages deciding on a filter.

Post picture.

Like a few pictures on Instgram
Still on whatsapp

Back to facebook for a scroll of exactly the same things ive just scrolled through.




A week later I realise i'm still only 3 pages into my book. It's shocking.

I have the shortest attention span. And it's constantly getting shorter. Hell, I even watched the end of my Orange is the New Black episode in the middle of writing that. And this is even a distraction from going to read my book. I got my tea, sat down, read one page and thought "I should update my blog. Hang on, i'm procrastinating. Why can't I focus on one thing. I should write a blog about that.
* 3 mins pass  *
This is going well, but let me just see if Piper and Alex are going to screw in the library first etc"

I wrote a blog a few months back about my reading wish list, and it's fair to say i've hardly progressed with it. I don't even have an excuse. I just can't seem to be able to sit still long enough, to shut the mundanity of other peoples lives out of my head, and explore a world better than this one - especially when all I read on facebook is how cute someone's new baby is or ridiculous articles about race or Tinder or pictures of someone's new shit tattoo. 

Am I really filling my spare, precious moments with egotistical bullshit coming from people I don't know or even care about anymore? And am I really prioritising this over reading, or painting, or listening to podcasts? (I've just discovered podcasts, aren't they great!) And more importantly, is it this mundane scrolling the very reason why mundane scrolling is all I do? Is it ruining my attention span each time, so that the next time, it is even harder to stop? I have noticed it - the more distractions, the easier it is to not stick to something. Why would we when we have 50 apps on our phones offering a multitude of fun and variety at any given point of the day, there in case whatever we're doing starts to use too many brain cells. Inside our pocket is a portable distraction device, we never need to be bored again. Scroll, flick, switch app, and repeat. 

But i'm so bored. I'm so bored that this is what I do when I have a moment to myself. I'm bored that people whip out their phones when conversation runs dry. Or when theres a hard task to finish, "but ah let me just check my whatsapps first." I can't stick to one thing anymore. It feels like a physical impossibility. And I blame my smartphone. The scariest thing is that I hardly realise i'm doing it, it's like a fully fledged habit. Automatically, i reach for the phone, and I scroll. 

I've found its not just hobbies technology is ruining. 

Platonic Relationships

There are so may ways of communicating with people these days. 
Facebook messenger

Oh and I forgot one! Telephone. As in a call. No? Anyway. 

All these ways, but sometimes I feel further away than ever. In theory I would think that with so many different forms of communication it's so much easier to say how you feel. But it seems our messages get diluted. They're too short, too quick, too flippant. Too easy. I can text for days, but meeting up with a mate, or speaking on the phone - fuck, even writing a letter! is unbelievably more meaningful. It puts to shame all the throwaway notes that whizz around all day. People say communication these days is great, some say it's lost all heart. I don't know. I just know that nothing beats the old fashioned ways of getting together - except of course facetime and skype, they're bloody genius!

Romantic relationships

I've been on tinder for a while. I think Tinder sums up everything technology embodies today - its fast, its accessible, it's flippant. It's not time consuming, you don't invest emotionally. It's throw away. You chat, you don't like someone, you delete them. You chat, you like someone, you meet up, you delete them. And that's great, if you're looking for some cheap thrills. But what isn't OK is that it seems to have given men the OK that women are throw away. I'm not going to be sexist, women I know too do exactly the same, but this is my experience. 
Now, to me, dating is super weird. I don't like the idea that men pay for everything on a date, and choose the places, and that there needs to be flowers and taxis home. That's not my thing (I like equality, down to earth fun, getting to know someone, not how much they can wow you with their wallet.) However, it seems that the first scenario isn't even an option anymore. I've gone on quite a few Tinder dates (cough 20), and not one has taken me out, payed for a meal, a cinema, drinks and offered to get me a taxi home at 1am. I always offer to go half, and every single man has accepted. I'm not begrudging, but jesus fuck. That isn't what used to happen, and this is not how you make someone feel special. 
Don't get me wrong, dating is expensive, but you just know that they're not poor - they're not paying because they don't want to invest in anything more than they have to on this date as they're just 'window shopping', and maybe they'll save that 20 quid to take that other slightly more attractive but not quite as funny girl (you know, the one with the bum shot) out tomorrow night (that he's texting when you go to the loo*). They're dating Instagram when they realise they want to switch over to Facebook because you know they've been with instagram for a few hours now and slightly bored, and woah so much exciting stuff MUST be happening over on FB... 

*(may have done that myself)

I'm sure if I ever talked to my granny about dating she would say "in my day the men did all the shit they had bare money and even if they didnt they would save up so they could treat this lovely girl to a banging night out, to show that he respected and cared about her. They would do that for 5 years then he'd ask if it was ok to snog her"*. And I would be like "gran yeah, these dudes now haven't got money because they spend it on extortionate house-share rents and getting wasted down the pub to try and bang chicks, and even if they do they're stingy fucks and don't want to waste money on a girl whose bum is slightly too small and waist to thigh ratio is a little bit off - they'll wait for that other chick who might have better tits. But he'll totally wanna bang anyway and never have to get my digits**". And bingo. Fast, throwaway. 

*may not go quite like that
** also may not go quite like that

My long winded point is, thats not right. Us girls are going to get issues (more issues) that we're commodities, that its ok for men to window shop, try women out for size and if their blow jobs are a bit off, (or really fucking ace, still) never talk to them again. I have mates who have been deeply hurt by this, treated like a throwaway blow up doll (even if the blow up doll made great food and her movie choice was on point, and didn't even use her special blow up doll parts). Tinder has destroyed any sort of chase, destroyed any semblance of 'getting to know someone'  - if we don't like, we swipe on to the next straight away. If we're bored, we un-match. done. We're just not programmed to wait around any longer. There's always something more exciting, whether it be the busty blonde, or the food snaps on instagram. (Guys, you might be missing some food pictures right now!)

(OMG, don't even get me started on sexting, or all those sexy ex flings still sending you naked snapchats (and you, back) while your girlfriend is reading Judy Blume in the bath (maybe he even popped over to see her, I mean, 'gone to the pub with the blokes, babe' ) - technology is ruining romance. Theres actually a great book about all this its called Modern Romance by Aziz Ansari - it's not out yet but deffo keep an eye out! WAIT There is a PERFECT analogy to everything i've been saying thus far about relationships. It's pure genius. THIS my readers is the jam analogy: 

Don’t you see what’s happening to us? There’s just too much jam out there. If you go on a date with a certain jam, you can’t even focus, ‘cause as soon as you go to the bathroom, three other jams have texted you. You go online, you see more jam there. You put in filters to find the perfect jam. There are iphone apps that literally tell you if there is jam nearby that wants to get eaten at that particular moment! Pg 132

THAT is what is wrong with all this technology, and the copious amounts of choice that comes with it. There's just too much jam. )

I deleted my facebook app yesterday, and Tinder too. I want to try and reclaim some time, time that I can use to read again, write and paint my walls. Also wash my dishes and hoover my stairs, because even household chores come second to aimless scrolling! I know that my life will be substantially more enriched by quality time - reading books not status updates, and going to the pub (and meeting new people!) rather than left-swiping men i'm judging by their hair cut for 2 hours. We have, and I certainly have, become utterly saturated with this feed of information that really has no bearing on my life. It's time I dropped my smartphone, undo the surgical stitches to my hand, and free myself into a world of free thinking, freedom and creativity. I don't think this will happen overnight (at all!), but you know, apparently admitting you have a problem is the first step, and now its just about getting into a super cool phone-free habit. Viva la regressive future.

I'll leave you with exhibit A, a shining example that I received last week of how technology can help guys be absolute twats.