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.

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."

Territorial Pissings

I think I should do an updated version of my transplant for you all to read, a version where I pander to this attention seeking trend. I'll put in all the terrible parts, the parts where I was in tears both for pain and despair, and just how terrible I really felt. I don't write about that shit because thats just a part of it, of course you're going to feel terrible. But maybe if I did people would realise what I went through was huge. It was massive. But the fact I had a transplant that wasn't lungs seems to simmer down in the lowly ranks compared to the awe and glory those having lung transplants receive. When will people realise that CF isn't just about lungs? That a lung transplant isn't the hardest thing anyone with CF will contend with? Try having an operation just as big - arguably bigger (definitely bigger) - and have shit lungs to contend with. The narrow mindedness of some startle me. You may shit on me for saying this, but a lung transplant is piss easy compared to what i've been through. I wish people would realise this. It's one of my pet hates when people think CF in a lung condition. It's not. Now try having a 12 hour operation, another 4 hour operation, 2 general anaesthetics, 3 new organs, 4 months of recovery in hospital, all the time not being able to breathe. It'd be a breeze if you had sparkly new puffers to wake up to. I'll undoubtedly get slaughtered for writing this, but I actually don't care. I feel as if I had succumbed to this attention seeking-whoreish nature some have taken upon themselves, more would realise what I, and many others have gone through or are going to go through when livers pack up and die. Instead we're left with the same culprits and their hoards of fans who throw around words such as "inspiration" and "hero" at them, giving the impression they are better/ stronger (or sicker and more worthy of sympathy) than others going through similar situations, when in reality everyone, even those with lowly liver, pancreas, intestine transplants are equally as heroic. (We are! Though how it's heroic to not die is beyond me!) We ALL cope with shit, and arguably better than the ones who plaster it all over facebook and twitter just for the hundreds of comments that will come flooding in afterwards to boost their already inflated ego. I hope it fucking bursts.