Shingle Belle

I'm here at Hotel Brompton. Chelsea's finest. I'm actually eating a scone at the moment. As you do.

I was admitted last tuesday afternoon, after getting a Picc line (it's a longer lasting intra-venous line) put in on the monday. The line was a breeze putting in - by a breeze I mean it took an hour and a half, however I was just napping through every failed attempt as the anaesthetic worked it's glorious numbing magic. Tuesday afternoon I dragged my wheelie suitcase to Foulis ward, where I am now chilling with said scone.

IV drugs, and extra nerve painkillers were prescribed for the shingles and all the unearthed hissy-fitting bacteria that have sent my lungs into a mini frenzy. Viruses do that to my lungs. The shingles rash had faded slightly, but the sensitivity and itchiness definitely escalated once I came in, resulting in little sleep and a lot of tossing and turning. It's also drained the life out of me - last week and the beginning of this one I could hardly move from my bed, only waking for meals and some half-hearted physio. I enquired about all my blood tests - whether my dose of antibiotics was too high, my iron levels, my infection levels, but everything is relatively normal. I was told it's just the shingles working it's toxic viral evilness. I finally feel perkier today, a week and a half in, and by perkier I mean i'm not craving a horizontal position and crying if my head hurts. Yay fun times.

That's my 'fun times' face

I was planning on starting a coding course online (bare with me, i'm pretty sure this isn't just the drugs/ exhaustion talking) because I think I should if I ever want to be employed when sick, BUT I haven't yet had the energy to. I have an inkling that even if I felt up to it that may have been the final straw and send me into a stupor I can barely wake up from. Instead I just laughed at Green Wing until my brain can now finally process more than crass jokes. (You MUST watch green wing on 40d - jesus fuck I forgot how funny it is!)

I've bought with me some books (i'm even struggling with books!) - Never Let Me Go by Ishiguro and The Crystal World by Ballard which i've both been itching to read for ages, just never found the time too. BOO ADULT LIFE. I love working and stuff but bloody hell I never ever find time to just read anymore. It's one of my big disappointments. Reading has always been such a huge part of what I love to do, but when I have free time these days all I do is scroll meaninglessly down a Facebook or Twitter feed, watch videos that have absolutely no meaning or relevance to my life posted by people I don't even care about. Like what's that about. The internet and my iphone is eating away at me. I think this is why my attention span has diminished to almost nothing - there's always something new to keep me entertained if I'm bored.

I'm hoping to escape on friday - I know this sounds quite trivial but I have a gig I want to go to on saturday, and I'm craving my home and some normality. This room has drained the life from me, I feel that without a sense of routine and normality I stew and rot, and as soon as I return to my life outside hospital I immediately feel myself again. This shake up of routines and detachment from the usual things you do in your every day life has a strange effect on me - there is no reason to get up, no reason to get dressed, and I become a slouchy slow version of myself. It's taking living in a bubble to the max, and I need to get out of it. Home IV's were discussed, but they wanted to keep an eye on my Tobramycin levels and kidney function as the Tobra has been throwing my kidneys off a bit the last couple of days. My rash has almost gone, the pain has completely gone, it's just a little itchy now. The tiredness was also a reason home IV's were dismissed, as they (and I in all honesty) wasn't sure if I would be able to wake up for them. Thankfully the tiredness has almost gone too, and I definitely, finally feel up to going home. I just hope they agree with me on the big ward round today, I will use all the persuasive skills I have! Consultants are tough to crack but it's been done before and maybe... um maybe can happen again...?? Maybe...... 

Of all the rash and midnight promises

Hello reader(s?!). As you may know, life can get awfully busy when things are good. I dread the days where I have time to write this blog - not dread the writing (I really love my little outlet), but the free time. Free time inevitably means i'm not working, which for the majority of this past year has kept me at a level of health I hope to achieve all the time. I've been active, i've been busy, I haven't had time to let the bugs in, the malaise grow, or the idleness spread its rotten fingers through organs and limbs.

I had my first bit of time off recently - I worked from mid April until the beginning of September at Diffusion the PR agency, then almost straight away started at Penguin, which is where I have been until a couple of weeks ago (and am still due back.) I was so excited for my holiday, but I could feel the exhaustion settling in as holiday time approached - suddenly the allure of a rest and some travel made getting up each morning to go to work feel like moving lead. But, yes! Holiday! I gatecrashed the parents holiday to go see my brother in Riga, who is doing some time there for his uni course. Off we flew, to a land of crisp cold air, fantastic sunsets and yummy beer. It was fun seeing the brother - seeing him operate in this rather alien land, where every building either reminded me of old fashioned aristocracy, or communist Russia.

The day after returning was halloween, where I exhausted myself even more by hosting a party, which is great fun, almost too much fun - I don't think I even got out of bed the day after. A few days later, I started to get a pain in the very tips of my lungs, at the back. Shit, I thought, so promptly did extra physio - I even got all nostalgic on mum by getting her to do some patting physio to shift this, what I presumed was, stuck-in mucus and the onslaught of infection. But this pain was rather odd. It kept moving. I was still coughing like a mad woman, so it was certainly puzzling. A couple of days later, the pain was sharp and spazzing, but now at the front. Fuck, was it liver? Next day, I wake up to find a small but definite rash line on my tummy, and combined with the excruciating pain, decided the best move was to pop off to A and E. Later that day, the consultant took one look at my notes, a look at my rash, and told me I have shingles.

Shingles! WTF. As my immune system is practically non-existent, I can now apparently catch old people diseases like shingles (which isn't an old person's thing, just sounds it, like asprin.). When i'm run down, and now immuno-supressed, dormant virus' like this, the chicken pox virus can now reappear as my poor immune system can't keep it under-wraps. I'm eagerly awaiting what next random thing I get... not really. Well this shingles has been a right pain in the arse. It's the most pain i've experienced in a long time, and as it's nerve, not many painkillers get it. Thankfully now, a week later, the pain has subsided, and I now just feel like viruses have completely invaded my body and are zapping all the energy my little body can muster.   The rash is definitely quite cool, apparently, it's textbook shingles. Laughably so. I didn't find it funny when the doc said that this afternoon but hey ho. I replied with "well I don't do things by halves" before sulking again. Here's proof: it's quite a beast! (check out the sneaky bit of scar!)

Reason for sulking: i'm now on the 'urgent' waiting list for a bed in Hotel Brompton, which I am less than happy about. I desperately want to return to Penguin - I had a pipe dream that I could go back in a week, but I don't see that happening anytime soon now. It sucks, but I know its the right thing to do, as I feel utterly steamrollered.  It's almost been a whole year since I was in last, which is a huge change to last year, where a good half of my year was spent in hospital. I'm hugely pleased. I hope this picks me up so I can return to being a poorly paid slave to books, which I secretly not so secretly, love.

Bye for now! Shingles-ridden-Laura x

Nailed It.

If you've been reading my blog for a while, you may remember this picture I took in august 2012, in this blog post. 

This my bloggy friends, is today:

Regardless of the obviously better colour nail polish (brown ftw),  just look at how much my clubbing has gone down! Clubbing is not only related to lung health but liver function too - also many other things, people still don't know what causes it. My clubbing got substantially worse with my liver disease, and now it seems to not only have returned to my pre liver damaged self, but surprisingly, even better than before.  The other fingers aren't as amazing as my thumb, but almost. 

Big thumbs up!

In other news, I'm having a lot of booky fun at Penguin. Yep, I bagged a placement at Penguin books! What started as a two week work experience placement, has now transformed into an internship, currently on week 6 and still at least two weeks to go. I felt a wave on excitement when I was referred to as 'the Intern' the other day, and have been put in charge of lots of lovely booky publishing jobs. The key is just to ask people if you can work with them, which is why in a couple of weeks i'm heading over to the publicity dept, after being asked to stay on at Portfolio until now. I was told today that i'd be very welcome back with Viking, who share a space with Portfolio, after my stint with publicity (!) 

This has definitely cemented my new found love for publishing, and just enhanced my long-standing passion for books and literature. Being surrounded by books all day is absolutely heavenly, and when i'm doing publicity etc, I don't feel like i'm selling my soul for a corrupt business - i'm selling and promoting things that are GOOD for the world, and good for people. I'm selling things I want people to buy and fall in love with and share, and creating interesting, thought-provoking and captivating trinkets of knowledge for people to indulge in. PR for Primark was great fun, but at the end of the day, it's Primark. Books matter, and I love it. I'm determined never to leave 80 Strand, with it's rows of books, rows of free books, and river views. I suddenly feel so happy, that it feels like i've finally found, after years of soul searching, what i'd really love to do. I think publishing is definitely for me. I just hope I can realise this dream and at some point in the not-too-distant future, find myself a proper solid place in a company.

View from Portfolio's meeting room (it's actually panoramic!)

Check out this view. It's gorgeous. Walking and working beside the river everyday has this sublime effect, it actually feels as if all the dust and cobwebs are being pulled away with the flow, which is especially helpful as I step out at Embankment tube feeling utterly clogged up, dizzy and often a bit nauseous.  I love my city!

Right outside the building

I'm also galavanting off to LATVIA this weekend! I'm visiting the brother who has flown the nest, hopefully to persuade him not to stay in the land of coldness, darkness... and coldness. I'm excited about taking my first trip abroad in 5 years, wooooo planes! And i'm certainly well enough  - at clinic on tuesday I blew 61% and 89%, a whole 9% better than my best ever!! And by ever I mean ever ever. My BMI is normal, and overall I feel bloody great. 

WOO LIFE

Weight Gain and Summer Fun

It's been pretty shittily long since i've written - there's much and simultaneously not much to write however I felt I should check in and let whoever reads this thing know that I'm not dead, but very much alive.

Over the last few months life has been pretty fucking awesome. Hospitals have figured incredibly low, and when I have popped to the Brompton for a check up, they send me away ecstatic at just how fantastically i'm doing. My swollen face has reduced quite a lot, and even my tummy keeps shrinking in size - I finally feel (almost - does anyone?) normal!

Big news health wise is that for the first time ever, i'm a healthy BMI *scream*. The dietician even said I don't need to gain anymore weight if I don't want to *double scream*. I never ever thought i'd ever hear those words, when I think about it i'm still in shock. For he majority of people with CF, "gain weight gain weight" is drummed into you at ever single clinic, every meal time the doctor is there on your shoulder, whispering those words, with your parents voices on the other side. Gaining weight, high calorie, eat more Laura! are statements that haunt your every move, and to be suddenly free from such a burden is both incredibly hard to comprehend, hard to put into action but at those epiphanic moments of realisation absolutely heavenly. I still eat high calorie - as I said it's hard to break the habit of a lifetime, but without the pressure food, mealtimes and day to day life is just incredibly more enjoyable. It surely feels like a huge weight has been lifted, and food is just there to enjoy now, not a vital part of my day. It will take a while to adjust to this new way of viewing eating, but I guess it's just part of the process of adjusting to my new body.

Chest wise, i've been incredibly stable. In the last month i've not only been to one festival, but two - my first ever festival experiences(!), complete with rainy night time camping, lack of sleep, and hurricane Bertha thrown in for good measure. The only casualty of both weekends being my intense sunburn - it got pretty unbearable, especially due to my deadly cipro/ voriconazole cocktail - much agony ensued! These weekends haven't had a detrimental effect on my lung function yet, though I went into them the healthiest i've been, probably ever. The two values of my lung function has returned to only being 20% apart rather than 30%, which I see as a good sign. Its now stable at 60 and 80 percent, and I feel fantastic. Below is exactly the consequences of feeling such a way, and having a little too much fun.

Interestingly, now i'm working 5 days a week, 9 until half 6, I seem to have an insane amount of energy, more than i've ever had before. It's invigorating, and I would really recommend to anyone filling your entire day with a structure in order to keep your body energized. I will go to work, do a 9 hour day, then go to the pub or out that evening, and repeat. I have no clue how i'm coping, but I am! As time progresses however I do find myself craving the weekend to recuperate, and i'm not sure if I could continuously do this sort of routine without a holiday every few months!

My time at Diffusion PR has nearly come to end, i'm sad to be leaving yet awaiting with an eager heart all the possibilities that lay ahead. I know for sure I don't want to return to lazy indolent days, and will be searching for a new job, part time would be ideal, as soon as I finish. I will allow myself a couple of weeks to get on top of myself, then look forward to jumping into a new project. PR has been interesting, but I don't want to close doors just yet career wise. The ethical work with Primark and Dunelm's social media especially have been fantastic and such good experience. Doing this work I have become brainwashed by the amount of bloggers and vloggers (I use fancy words now) i've come across, so out of curiosity I decided the other day to dabble with my very own vlog. I was supposed to be working from home, but obviously found ways to procrastinate, resulting in this weird piece of cringey cinema. Here's the link to laugh, I doubt i'll be doing another any time soon!

A Calm So Deep

I've had such a fun month. I'm truly loving everything life is throwing at me these days, which is mostly friendship, love, food, and fun. I also have a job! It's a paid internship at a marketing/PR company in Great Portland Street, that i'm ecstatic about starting on monday. These leisurely meandering days will soon be a thing of the past, and I can't wait to hurl myself into normality.

Health wise, i've put on quite a bit of weight - I was this weight a couple of months ago before I had that stream of colds and coughs around christmas, yet then everything was utterly different. Before, when at 50kg, I felt (and was) absolutely (relatively!) huge around my tummy and my face, everywhere else still scarily skeletal. Now however, my face and my tummy look the trimmest they've been in a good long while, but my arms, legs, bum and hips have filled out! I'm so over the moon - I feel womanly... and sexy and.... normal! I've been taking peppermint capsules and charcoal capsules (charcoal in the middle of the day to stop them absorbing the other meds), and they seem to have made a huge and noticeable difference to the bloating. My chest has also been the clearest it's been since my transplant over a year ago - why I even had clear lung gunk the other day! I'm not waking up fighting for breath, nor reaching for the inhalers before I can even think about doing anything with my day. I can't fully express what an incredible feeling it is; it's just so liberating. I'm managing to keep up if not thrive on this fun and hectic lifestyle I have at the moment, filled with gigs and pubs and outings. I may start some cipro next monday, just to buffer myself for the onslaught a working life may have on my body.

Almost everyday I go for a ramble across Wormwood Scrubs to keep these puffers stretching - a huge bit of parkland just round the corner from where I live. It hosts fantastic views of London - every landmark you can think of I can see from this windy spot. Anyone that knows me (or reads this blog!) knows i'm a sucker for a view, and I could easily spend hours up there, whiling way an evening watching the beast that is London, now suddenly draped in serenity and stillness. Wordsworth writes of my city: 


Earth hath not anything to show more fair:
Dull would he be of soul who could pass by
A sight so touching in its majesty:
This City now doth, like a garment, wear
The beauty of the morning; silent, bare,
Ships, towers, domes, theatres and temples lie
Open unto the fields, and to the sky;
All bright and glittering in the smokeless air.
Never did sun more beautifully steep
In his first splendor, valley, rock, or hill;
Ne'er saw I, never felt, a calm so deep!
The river glideth at his own sweet will:
Dear God! The very houses seem asleep;
And all that mighty heart is lying still!

(Composed Upon Westminster Bridge, 1802)

Everytime i'm up there I think of that mighty heart lying still - such power and such majesty, yet seemingly so calm, so tranquil. "Never saw I, never felt, a calm so deep!". Again Shelley pops to mind - the "unremitting interchange" between your surroundings and your own mind, "which passively now renders and receives fast influencings" - his deep calm heightens my deep calm, as it's true - never have I felt a calm so deep in such a long time. This view, this space, this endless horizon perpetuates my happiness and i'm left overwhelmed by just how awesome life finally fucking is. Of course the splendour falls short of what somewhere beautifully high up like Primrose Hill has to offer (you know i've actually never been, whats that about!), but it still more than adequately satisfies my Romantic tendencies, and my love of all things beautiful, all things sublime.** My housemates and I would cartwheel and do 'yoga' on there all the time, but now they've sadly left me i'd feel like a bit off a loony toon doing abysmal flips by myself. Instead I arm myself with headphones, tea in a water bottle and a kitkat in the pocket, and fill my lungs with the crisp air right down to the forgotten sleepy tips.

I'm definitely going to work hard so this fantastic spell doesn't catapult downhill as soon as I start working - I honestly haven't felt so good or so content in such a long time, and I hope this simultaneous deep calm and energy lasts for as long as is humanly possible. 


*PS I don't have osteoporosis anymore!!! I fucking love you Liv II !!

**Interestingly, normally the sublime is associated with terror, but I seem to go with Shelley's interpretation (and radical departure from the normal interpretation) that the sublime can lead to a greater understanding of nature and 'truth' (yourself? Everything?). I remember he wrote somewhere that for a "cultivated mind" the sublime has this alternative meaning, and I guess he means those not influenced by the supernatural, or those that believe in religious ideologies ("large codes of fraud and woe"). I've never found the Sublime terrifying, it only heightens my love of everything beautiful, and seems to cement me within this mysterious and bonkers world. 

Thou hast a voice, great Mountain, to repeal
Large codes of fraud and woe; not understood
By all, but which the wise, and great, and good
Interpret, or make felt, or deeply feel.

The Sun In Splendour

I'm all settled in my new house, and I love it. Things are actually pretty damn good at the moment - of course the house and the independence that comes with that, my health too is fabulous and stable, and i'm pretty happy. I don't think i'll ever be totally content, my high expectations continuously seem to fall short of the realities of life - it seems to be a malady I can't shift despite the set backs that should dampen my expectations and also just the pure appreciation of what I now have.

I'm still job hunting, but again I refuse to settle for a banal job even though my money is depleting at the rate of knots. Sometimes I wish I could just shake myself, hurl out the defiant cobwebs and stubborn morals that have me gripped in this debilitating stance. The whole "do what you love" is really a very privileged stance to have - though the privilege, freedom and scope for experimenting as I said is twisting down the plughole at an intense speed, so I guess a soulless recruitment job may soon be on the cards. I'd rather fucking starve to be brutally honest, even if they paid fantastically, had an abundance of holidays and leisurely lunches - none of it would be worth the soul destroying nature of what I'd fill my precious days with. I'm waiting to her back from another handful of job applications - ones that I could actually love - so hopefully one may offer a glimmer of potential that i'll just grab.

Living by myself has brought with it this dichotomy of feelings - as I said the freedom and independence is extremely relieving and bloody fantastic, like a weight has been lifted from my shoulders. It's taxing and exciting too as I try sort out bills, broadband and broken boilers. I also adore the space the place gives me to think and let my mind wonder - the place is a blank canvas for my thoughts, musings and dreams, and to twirl about at night with not even a spider looking on criticising my moves  (...yet.)
I'm not the most social of butterflies, but the stillness and quietness some of the days and nights bring with them do however fall on me like a thick fog, and makes me crave the company (even though sometimes grating and annoying) living at home had. I don't even have a kitty to play with and tease, and tell life's woes and adventures too as it looks on, completely uninterested. Starting tomorrow however my mate and her fella will be staying with me for a month, and in July my other friend will come and live with me permanently(ish), which will inject some life and a welcoming continual buzz. I can't wait.

I think this time and space to think is a curse in disguise - there's something to be said for a relentless life where the niggles of your mind don;t have either the time or the space to burrow and lay their eggs, loaded with possibilities, doubt, apprehension, memories. I crave a hectic, all consuming lifestyle, which is something I doubted I ever would, or for a while be well enough to do. Interesting and taxing, yes. Exhausting, not so much. But I wish to numb my wandering mind and fill it instead with everything everyone else does - mostly banal, grown up shit. How fantastic must it be to seamlessly erase those escalating thoughts and concerns about life and health that linger all day, and just do, just be. The rare days I spend now consumed in indolence, that I once cherished and love, now fill me with a huge sense of nothingness and waste, and I wonder how on earth I spent such a large chunk of time swamping. I know ill health and an energy sapping liver has a lot to answer for, and i guess the fact i'm now restless and sick of it is a fantastic and encouraging sign that i'm healthy. As Milton says, "Awake! Arise! Or be forever fall'n!" I just have to grab it by the balls and embrace it. I don't want to spend a life musing about lost loves and lost lung function, the changing shape of my face and the changing shape of the world (unless it's my job to do and i'm bloody paid for it!)

I'm still reading Paradise Lost (my time recently has been taken up with painting, cleaning, all that house moving palaver), and I really really love it. Milton was a fucking badass. It's so rich and deep, and i'm a sucker for deep and profound quotes. He describes the four "baleful" rivers of Hell, as well as Lethe, who those who have died cross in order to reach the underworld. If you touch the waters of Lethe, you immediately forget all memories and erase all feelings, and will spend the rest of your 'existence' in Hell completely numb to all experiences. As they cross, they all strain down to touch it, but that fucking bitch gorgon Medusa stops them. So near and yet so far. It's pretty heartbreaking, to think they're so close to a bearable eternity in Hell yet taunted so mercilessly.

I'm rambling because it's way past my new bedtime of before midnight. See, i'm really trying to be good, I am.



"What hath night to do with sleep?"
Paradise Lost

Nocturnal vibrations, electric moons

My bed is full of biscuit crumbs and insulin needles. I guess this is a good sign -  a sign that my appetite has once again fluctuated upwards, my weight will soon follow suit (quickly too, this pancreas is a dream). I'm a fad, a yoyo dieter, one week scoffing biscuits the other week biscuits not even entering my conscious mind. Weeks will pass with two measly meals a day, until I wake up one sunny cool morning and find myself craving a second cereal, a second helping at lunch. I have found no correlation to this flummoxing fluctuation in appetite, though i've never been able to pin point every bemusing change in my health, simply because there are so many variables. The only answer is to stay as stable as possible - take every tablet, every nebuliser, wear every layer I should as I go out into the cold, and probably leave an hour earlier than I want to when out in the misty early hours of the morning. A dip will throw everything off course and plummet this equilibrium into chaos, inevitably disrupting the delicate order of things. What could cause a dip? Who knows.

What shall I do? Let's go with everything. 

I met a man on the Hammersmith and city line. He very kindly told me as we approached Baker Street, he'll send me a note in the Metro, mentioning how he'd just love to let me have a bite of his fruit and nut bar, then winking. I chuckled, nervously, trying not to do anything seductive to my dairy milk. It was an odd moment, creepily intimate yet witnessed by a packed train of fellow londoners, no doubt looking on expecting to find my mangled and abused dead body on the BBC news the next morning. 

I looked in the paper the next day for my love note, nothing.

I can't say i'm disappointed, though last night I had visions of framing it and telling my kids about horrifically uneasy yet quite serendipitous moments that we all encounter on the london underground. 

As I was making my home that same evening at around midnight, I looked around the infinite and ghostly carriage as I was sophisticatedly scoffing my KFC, wondering if any of these unsuspecting passengers would find a slightly drunk redhead stuffing popcorn chicken in her mouth alluring enough to write another note in the paper. Londoners are a weird and varied bunch, you never know. 

I love the night time. Space and time for thoughts, musings and dreams. It's a darkness to indulge in those moments the daytime has no time for as they're swallowed by to-do-lists and nebulisers, expectations of productivity and desperate clinging for order. The Futurists in their manifesto declared "time and space died yesterday", and in an ironic twist in circumstance, their aggressive declaration of productivity has morphed into an calm acceptance that that productivity has set with the sun, and the night is mine to dissolve into.  "Let us leave good sense behind like a hideous husk and let us hurl ourselves, like fruit spiced with pride, into the immense mouth and breast of the world".
My mind is hurling. It's speeding into those immense realms, leaving sense - all good sense behind in my tangled duvet. Reality and my perception of it has been lost in the infinite possibilities of the stars, so much so I worry for my own sanity. The Romantics were obsessed with the power of the imagination and it's ability to catapult you into places and experiences and feelings you couldn't possibly reach. To harness that power transforms a mundane life, often, like Coleridge, trapped within the limitations of the frail human body, and can take you away from a life where you cough every 5 minutes, drown in pills...insulin needles, and are alone.*
"What is the use of looking behind at the moment when we must open the mysterious shutters of the impossible". The Futurists were a bunch of dodgy fascists with very questionable intentions, but I can't help but fall in love with their inexhaustible energy and contagious lust for a better life. If you haven't read the Futurist Manifesto please do, it'll probably blow your mind. They dreamed big, and in the silence of the night my dreams take on an almost similar essence of grandeur, just on a more subjective and personal scale. Boundless and barrier free, these waking dreams travel to the stars and back, carving out pictures of life that sometimes you're almost scared to think of in case you jinx those wishes. I was told I was a dreamer by someone I used to know, and I guess I am, when the realities of life such as hospitals and money are snoozing in the corner. The sun inevitably comes up and suddenly time and space are back from the dead - very real and very alive, there's that ticking clock - inside and out, and all those invisible boundaries we encounter everyday, narrowing our space to explore, to think, to dream.

Some say that gleams of a remoter world
Visit the soul in sleep, that death is slumber,
And that its shapes the busy thoughts outnumber
Of those who wake and live, - I look on high;
Has some unknown omnipotence unfurl'd
The veil of life and death? or do I lie
In dream, and does the mightier world of sleep
Spread far around and inaccessibly
It circles?
Shelley, Mont Blanc, 1816 (just before his 25th birthday SNAP. Wait wtf am I doing with my life)

Life in the celestial light of day is slowly catching up - in the next couple of weeks i'll be moving into my own house in East Acton, and i'm proper over the moon! I can't wait to have my own place, my own space to just live and try humorously to be a grown up. No doubt in the not-too-distant-future i'll tell you all my #adultfail tales. Or I may, by some freak of nature, be a natural - the perfect house wifey, complete with marigolds, tea and a Victoria Sponge. (We can dream, can't we... !)
The sunshine, especially this glorious springtime weather, has started to thaw my malaise and incessant procrastination - this week alone i've started the squat challenge, seen the GP about a gym and trainer referral, have cut out fizzy drinks and almost all gluten, and am going to try drink much more water - all things i've been meaning to do for quite a while, instead hiding myself in Gossip Girl and dreaming of Dan Humphry. I'm also on 100% compliance with all my treatment. I seem to have a finite number of things I can do/take, and the addition of mannitol (a mucus loosener, twice a day, bloody tiring) pushed that over the edge. For a while both Tobi podhaler (inhaled antibiotic twice daily) and mannitol seemlessly erased themselves from my routine, and it's been having quite a detrimental affect on my health (as it fucking would). But now, by cutting down the amount of mannitol tablets I inhale each session it's become not so exhausting, completely managable, and leaving time and energy for the Tobi pod. I'm already feeling the benefits. It seems this spring has heralded in a new wave of optimism and determination - and i'm sure the imminent new house and all the freedom, responsibility and possibilities that will arise is to thank, as I will finally hold the reigns to my own universe.

*Dreams such as travelling to distant places, going on foreign boozy adventures, or climbing huge mountains and soaking up sublime views from those unreachable heights are fast becoming just that  - dreams. I can't even walk up a flight of stairs without getting out of breath, how could I scale the heights of Mont Blanc (not forgetting carrying with me the complete works of Shelley)? I'm resigning myself to the fact that those arduous delights will have to acclimatise not to the reality of high altitude, but the confines of my imagination. "The everlasting universe of things flows through the mind, and rolls its rapid waves, now dark - now glittering - now reflecting doom - now lending splendour..."

A world of magnets and miracles

I will start by saying a belated happy first birthday to my new organs! I can't quite believe it's been a year: the time has whistled by, I guess I've been consumed by a whirlwind of hospital visits, check ups, rehab, highs and lows. It's been an odd year - so much had happened yet seemingly so little. Recovering has taken so much longer than I thought it would've - from trying to regain my lung function, trying to put on weight, trying to build back my muscles and strength (I still feel wobbly despite cycling and hitting the gym)... To deciding on a career path, finding jobs, finding (and losing) loves, rekindling friendships and grasping back my independence. As I said, it's been full of highs and lows, the lows either revolving around that "kindly race of men" (though substitute kindly for 'lost and confused'), or that feeling of limbo that creeps silently in like a morning mist, and without realising you find that you feel utterly lost.
"What now" has been the shape this limbo has taken, haunting my days and my nights, coming to the forefront of mind at poignant moments when I feel as if my bungee cords have just been cut (rejection of any sort seems to hold the knife). I don't fall because, as the optimist I am, I know other things, other jobs, other people, will be round the corner. It's the unsettling, horrible and disturbing feeling of floating that to me is the most terrifying - not knowing what comes next or how even to take the next step.

It sounds cheesy but I've learnt a great deal about myself this year. I think I've coped with an onslaught of shit reasonably well - I've definitely crumbled, and at times it's taken a good kick up the arse to regain my sanity. But I've powered through, and even surprised myself at this new found resilience in all aspects of life. I guess I care more about myself - my health mostly, body AND mind. I've gone through too much hurt and pain and hospitals and upset to let things destroy all I've endured and worked for.

At my 1 year post tx clinic the other day, we were looking at my blood level chart - a huge piece of card that has tracked all my liver levels and other important blood results throughout my whole transplant journey - from being listed to present day (yes, it's massive.) Seeing my liver levels creep - no, jump up each time before my transplant, to seeing them beautifully and steadily glide down after, was just amazing. The consultants couldn't be happier, and neither could I. Seeing my levels so perfect blur out the hair loss, the chubby face, the shaking, the bruising, the loss of appetite... the necessary evils the immunos inflict in this game of give and take. 

So, what next? The dreaded question. There are points of clarity within the hazy future, I see where I need and want to be going yet that path looks a little blurred and undistinguished. I suppose I'll just have to build it up as I go along, hoping I don't fall through the illusion - the often unreachable visions of grandeur and happiness I create. I seem to make progress - apply for jobs, sort everything out, write, read, conspire - yet an exacerbation will take hold and pull me back to complacency and stagnancy while my energy levels are in the dumps. It's a vicious cycle - once I pick up I attack everything with gusto, jump into life head first, stay out late and as my mum would say, "burn the candle at both ends", until I become run down again. I guess I need to chill, my lungs can't keep up with the chaotic life my mind is aching to pursue. It upsets me, when people I know seemingly have an inexhaustible life force and energy - one that I'm achingly jealous of. 

Today is a day of catch-up after a tumultuous week. I find myself sat here with my tea, feeling bruised from last night's 4am return, and a cumulative bruising of body and mind from a week of late nights and befuddlement . For matters of the heart, in this instance I'm drawn to say body and mind not just mind, because it seems my whole being has been broken and bent. I'm really quite unsure why I feel like this to the extent I do, I suddenly feel as if a melancholic dew is covering everything I see, everything I do, piercing my mind and clouding my vision with an illusive and intangible greyness. I know it'll be gone in a day or two, I just didn't expect to feel so empty. I've prescribed myself gin, Fleetwood Mac and dancing, and got hit on by 3 over 40's last night so the future is... bright.
I'll leave you with this piece of genius, I guess if you want to get deep you could say my scar is now an integral part of what makes up me, or you could just think it's fucking cool. 

Beyond the horizon of the place we lived when we were young
In a world of magnets and miracles
Our thoughts strayed constantly and without boundary
The ringing of the division bell had begun

...

Looking beyond the embers of bridges glowing behind us

To a glimpse of how green it was on the other side
Steps taken forwards but sleepwalking back again
Dragged by the force of some inner tide

...

Encumbered forever by desire and ambition 

There's a hunger still unsatisfied
Our weary eyes still stray to the horizon 
Though down this road we've been so many times

Fear No More

"'Fear no more the heat o' the sun, Nor the furious winter rages.' This late age of the world's experience had bred in them all, all men and women, a well of tears. Tears and sorrows; courage and endurance." 
Mrs Dalloway


It is almost a year ago since I said goodbye to CF related diabetes, yet the ward round at Addenbrookes on the second of January delivered a blow I had been dreading, a fear that since my parched and thirsty christmas had shadowed every thought. My immune system is attacking and destroying my islet cells: I have Type 1 diabetes. Through tears I bombarded the consultant with question after question...plasmapheresis...more immunosuppressants... yet the answer remained stoically cold: "there's nothing we can do". These tears drowned me for the next three days, my bay in Cambridge through my eyes uncannily reflecting Alice's drowned world, a salty sea of despondency. Like the last year hadn't existed, back into my life seamlessly appeared the bright orange pens of novo rapid, and the piercing monstrous green of the new beast, Levemir. Soon my bedside was littered with needles and plastic casings, piling up around me as I lay, maudlin and blurry eyed.

Back to the Brompton I returned, a few days later, from where I had started on the 27th. My Chelsea Pad brought me a welcoming solitude, high up and far from questioning voices and concerned parents. The western sunsets each night followed by the infinite cool and intriguing night skies followed by the dreamy sunlight and morphing cloud formations brought me my transcendence from hospital and bodily woes; I would sit, lean, stare, and think...with headphones on, out of the bay window that offered the same comfort way back in April after my transplant. I would stare at the same planes - the same twinkling planes and twinkling stars that I saw back then that would calm and soothe and transport me far away..., yet now I couldn't help and compare the joy I felt back then on receiving such majestic sights - the hope, the excitement, compared with the greyness now that was hindering my vision. Yet the tumultuous night wind would whistle through the gap, calling... opened it would heave through the wide open window and dance around the cobwebs of my mind, scuttling the spiders out; grabbing me and whirling me into the infinite possibilities of life outside my four hospital walls. I will always be content with a view and a breeze.

Dizzy Ravine! and when I gaze on thee
I seem as in a trance sublime and strange
To muse on my own separate fantasy,
My own, my human mind, which passively
Now renders and receives fast influencings,
Holding an unremitting interchange
With the clear universe of things around;
(Shelley, Mont Blanc)

My liver is still perfect. Livers are the most robust organ to transplant, the pancreas (the Islet cells that produce insulin especially) the least. Liv II is still happy and content in there, more than ever. And the rest of the pancreas works - my digestion is perfect and I still don't need enzymes to digest food. I blew my best lung function in living memory - my FVC now 87%, which was a desperately needed ray of sunshine in these dark January days. These aspects of my health are again overshadowing my set back, the numbness that consumed fading and the normal Laura appearing again.

Back home and life is kicking in, a stream of people and things to distract from that torturing stillness that only perpetuates melancholy thoughts. In the hustle and bustle of living insulin is once again just one little part of my life, meaningless and trivial next to happiness... drunkenness.... As much as my solitude and rendez-vous with my thoughts and imagination was needed and rather invigorating, I am embracing all the distractions life has to offer, to escape the reality that haunts the stillness of my mind. I'm now dissolving in Mrs Dalloway's thoughts instead, and am overcome by the beauty of Virginia Woolf's writing. She's a true poet writing through prose; I've marked down every other page, marking passages that overwhelm me with their truth or their beauty, or both. Im now starting to think it'd be easier to mark down the pages that don't contain something of note. She's such an ace reflector of consciousness and thoughts, writing with as much beauty as Shelley or Keats the workings and wonder of all her characters minds, with such acute accuracy and poetic poignancy that you feel she's reached deep inside your mind and has described emotions, thoughts and feelings you'd never even registered before yet ring so true.

I'm grateful to have such a loving network around me when things get a bit shit, I've had a stream of visitors, calls, texts, messages, outings... fun distractions is what it's all about. Keats' "O! For a life of sensations rather than thoughts" has never seemed so relevant - I'm off to live, to explore, to experience... and overpower and forget about (temporary) debilitating set backs with an onslaught of hardcore joviality.




"Fear no more, says the heart, committing its burden to the sea, which sighs collectively for all sorrows, and renews, begins, collects, lets fall."