University

I'm so happy with my first two weeks back at university. My boyfriend and I have started a healthy eating plan so we're having lots of fruit and veg and no sneaky trips to McDonalds. I think it's a bit much to ask my body to run better by just changing my diet so I can't say I'm feeling a change but it's always good to be healthy. 

But the best bit about this week has been getting my results back. I wasn't that pleased with my first result as I didn't think the teacher really understood what I was doing and she said herself that she wouldn't choose to read the kind of stuff that I write. (My stories are a bit on the ethereal side, or rather my storytelling is ethereal, it's hard to explain really. If it was a song I guess you'd call it soulful). But I did get a 2.1 so I can't complain really. Then I got my results back for my Writing for Young People essay which was about escapism in children's literature. I got a first!! I couldn't believe it. I never seem to be able to get into the first category with essays, I always get 1 or 2% off but I finally did it. It was pretty good, if I may say so myself. 

Then for my next essay, which was for my Short Stories module, I got another 2.1. The essay was on omission, which is the writing practise of leaving out certain information and how by leaving out something you're actually adding a whole backstory to the piece. For example a simple awkward line between a divorced couple might hint at a whole other story, but it's all up to the reader's imagination, which adds depth to the story, a story beyond the story if you like. And next I got another first for my short story collection!! It included three short stories. One about a mad woman and the storyline is her murdering her son but you don't know if she actually did or it was all in her head (lots of omission going on there), one about a homeless boy walking through a desert, which is just really descriptive and one I wrote in hospital two years ago that I brushed up and that was about the first time I was in hospital and someone died in the ward. (They don't sound that good when you try and explain them but I promise you they're better than they sound!) I may be all happy and positive in real life but my writing is madly depressing I'm afraid. But anyway my tutor loved it and said I'm really good at creating a vivid setting and a strong sense of self (okay, so I have no idea what that last one means but it sounds good). And he said I was talented, so I feel really spurred on to do good in everything else now! I'd really love to publish a book of short stories so it's good to know I have three good ones to put into a short story book. I'm afraid I can't put any of my writing on here because it would make getting it published extremely hard. But you'll definitely be hearing about it if I do get something published! 

The best bit about everything is that I'm done with my short story module now so I get every Wednesday off and as long as my marks don't change when they're moderated I've bagged a first for that module as my 2.1 was high enough that I averaged out at a first. Woppeee! 

I'm feeling quite positive about getting a book published now. It is really difficult being a writer but I think I'm just about naive enough to think it's possible, just wise enough to know how to do it and just mad enough to keep working at it. I'm going to get a book published if it kills me! 

I'm Back!

I have returned from my trip to Oxford and I'm certainly pretty tired out! But I had a really good time! I'm pretty pleased with how my health kept up as well. I wasn't as tired out as I thought I'd be throughout the trip but when I got home I was absolutely exhausted! I could barely stay away long enough to have a bath and get into bed but I felt much better after a long sleep. Considering I wasn't sleeping brilliantly on the trip as the hotel was boiling, I'm very impressed with how I kept going, even if I'm probably going to be feeling rather tired out this week. It was definitely worth it.

The trip mainly consisted of trying out all the restaurants in Oxford and I absolutely stuffed myself full of food! If I didn't put on any weight, I never will. We ate out for lunch and diner nearly every day. We found this really lovely pub called 'The Eagle and Child' just round the corner from the Ashmolean Museum, which is apparently where J. R. R. Tolkien wrote Lord of The Rings, and they had some of his drawings on the walls. Lewis Carroll too is said to have eaten and wrote there. It was very quintessentially British, which is always nice. We had a really good curry on the last night, which was just up the road from the hotel. I'm fussy with curries because I like a korma but I often find them too sweet and not spicy enough but I like really creamy curries but this time I had a spicy starter so I was happy with my very rich, creamy curry. I don't feel like I've been properly hungry for ages so I'm looking forward to have a few salads, eating a bit healthier and going back to my grazing. 

The highlight of the trip was actually something we didn't plan at all. We were in the Ashmolean cafe, wondering what to do in the evening and thinking we couldn't possibly go out to dinner again and thought we'd check out the local theatres. The only thing on at the main theatre was the Rocky Horror Show and even though I love musicals I don't think it would be my cup of tea so we looked at the Oxford Playhouse and saw they had a Agatha Christie play on called 'Go Back for Murder'. Now me and my boyfriend love a good crime drama so we phoned up and got two tickets for £30 right at the front for that night. The play was really good too, probably the best play I've seen for a while. 

The Harry Potter tour was great too, it was really good to go again because there was a lot of things I'd forgotten and things I didn't notice before. Though it wasn't quite as magical as the first time it was still really good. I won't spoil anything for you in case you're planning on going because the magic is in the surprise! I splurged a bit at the gift shop, but you never know if you'll be able to go again and you can't buy a lot of the stuff anywhere else other than the Harry Potter resort in America. So I bought some charity books J. K. Rowling did for comic relief back in 2001. I don't know why I never bought them but I'd been meaning to get them ever since I got another charity book, 'The Tales of Beadle the Bard' for Christmas, which are wizard fairytales and are akin to our Grimm Tales. The two books I got from the tour are based on Hogwarts text books, which feature in the original Harry Potter books. 

'Fantastic Beasts and Where to Find Them' describes all the creatures in the world of Harry Potter including some annotations from Harry and Ron. 'Quidditch Through The Ages', which obviously from the title gives a bit more information about the game than the Harry Potter books did. This too is graffitied and has a library stamp in the front with a list of students who have taken out the book, which is a nice touch. They were £5 each. I probably could have got them cheaper online but as they're charity books I wanted to buy them from a proper shop so I know where the money is going. And brand new books are much nicer when they haven't been battered in the post. 

I also got a little notebook, because I love notebooks. I have loads of them lying around so one more can't hurt, right? The crest on the front is metal, the pleather is nice quality and the paper inside is really glossy so it's nice it's well made. 

I also got a soft toy of Scabbers, which is Ron's rat and ends up being a bit more than he seems (dum dum dah!). I just thought he was cute and he's even got a toe missing and little patches of fur pulled out like he's described in the books. And I got a deathly hallows keying, which you can see in the picture too. I also got some pins to go on the little bag I keep my iloprost in because I put all my heart charity pins on there so I thought I'd start collecting pins. Because I'm weird like that.

There were lots of nice little book shops we found in Oxford we found as we were walking around trying in vane to make ourselves hungry before lunch. I bought a good hospital boredom buster book from Waterstones on the first day, which is called 'Wreck My Journal' and it's like an adult activity book basically. On every page there's a different way to wreck the book. For example there some normal ones that you'll probably remember doing to your old school books like punching through the page with a pencil, colouring in a whole page and some really inventive ones like eating colourful candy and licking the page and using strands of your hair to make a pattern or picture. It seems like a really funny thing to do in hospital because people will probably think I'm really crazy just sat in bed licking my book. I haven't put in a picture because I think I'll do a before and after shot when I've finished it. I also bought a book of Samuel Taylor Couleridge's poetry, which I like because it's really dark; Couleridge suffered from depression. And I also got Virginia Woolf's 'The Waves' because beginning sounds like a story I'm writing at the moment so I though it might inspire me to write a bit more of it. I bought both of those from a £2 bookshop. I think they must be the end of printing lines because they're all brand new and unread. Now I need to finish Mrs Dalloway, which I've been reading for ages. Miss Woolf is quite heavy going! 

Think that's about it really. We wanted to go round a college but they were all closed and we didn't end up going down the river because my skin is reacting really badly to the sun at the moment. I've always got one or two attacks of heat rash but this year has been ridiculous. I'm going to see if my medication might have something to do with it as I got sun burnt the other day whilst sitting in the shade. Iloprost is the only thing new but it's not on the list of side effects. However there's probably not a great deal of data on the subject because very few people take it so that doesn't really rule it out as the cause. Maybe if it's due to photosensitivity there might be a different meditation they can give me rather than the hay fever tablets I've tried, which haven't done much for it. But for now I'm just trying not to scratch my sunburnt rash! 

Nothing much else to update you on. I'm going to see the Papworth transplant team in just under three weeks for the usual tests and things. Nothing that interesting I don't think. I haven't got any further in my decision making as to whether or not to have a transplant in the future. I'm just going to keep checking in with the transplant team and I'm not ruling anything out yet and hopefully it'll be a nice while before I have to worry about making that decision. 

I've got a few half written posts knocking about so no doubt they'll be up in the near future. Thanks for reading and have a nice day! 

My inspirations

I'm doing a bit of a different blog post today. I felt like doing something nice and light as a nice change from all the transplant stuff and as I'm feeling really good at the moment, there's not much to say. So I'm going to do a post about my writing inspirations but they're also my life inspirations as well. I've done little notes of all my favourite quotes because I think that's a bit more visual and creative than a boring post of typed out quotes from various people.

I own a little notebook in which I write everything I read that inspires me, such as little quotes and poems that I really like and if I'm feeling down or I'm in hospital or something, I get it out and read through it. I find books really difficult to read when I'm ill or sleep deprived so a little book of quotes is a really good way of cheering myself up. So I hope this cheers you all up too. And hopefully you can read my writing.

Lovely little poem from Emily Dickinson, one of my favourite poets, is definitely one to read at times of crisis. 

I truly believe that everyone has a purpose on earth, everyone has something their meant to do and everything is connected. Everything happens for a reason. I guess some people would call that hope.

Virginia Woolf is a writer I feel I have a lot in common with, besides the whole mental illness thing. Though she's written a lot about her illness and I do tend to agree with a lot of her views. Her books are difficult to get through, I'm not going to lie, but they're worth the effort. I love this quote because I feel like I'm fighting death quite a lot in my life and this pretty much sums it up. Although I think when she says she will fling herself at death, she's actually talking about suicide but I like to think it's more about finding some bridge between accepting death and dying with a fight.

In my life it does seem as though I have to pay for a good day with a few bad ones. I don't like to think like that but I love this poem anyway. I particularly like the imagery of 'coffers heaped with tears.'

I think we have a certain amount of power over how we make our life. Even when it seems like a person has no control at all. It's like making the best of a bad situation. I like Milton's idea that we make our own heaven or our own hell. Paradise Lost is a classic that everyone should read, but I do advice investing in the York notes because it's not the easiest thing to read and understand. 

I really love this poem! I try not to think about dying because at the age of 20, it's something that should be as distant as the moon. But it's hard not to think, in that split second before the anaesthetic engulfs you, 'what if I don't ever wake up?' But I think this poem makes some sense out of the idea of death. It's hard to explain how this poem makes everything okay in my head. It gives me a brief glimpse of understanding and acceptance of death and I think if a writer can do that to a 20 year old who has been fighting death since the word go, he's probably one of the best writers you can find. 

Let's end on a note of dark humour. Because poetry doesn't always have to be heavy going and thought provoking. 

I hope you enjoyed my selection of favourite quotes and poems. Who doesn't like a nice inspirational quote eh? It's true, I'm a quote-a-holic!

Updates

I'm currently melting in the heat wave we're having in the uk at the moment. My lungs are definitely feeling the heat and humidity but generally I've been feeling really good. I feel like I have a lot of energy and I've been really busy making full use of it.

I recently got an article about my transplant experience in my local newspaper following National Transplant week. If you're interested in reading it you can find it online here, http://www.gloucestercitizen.co.uk/die-transplant/story-19516621-detail/story.html

I'm really happy to get something published, even if I did tell myself I wanted to get some stories out there before getting a career out of the fact that I'm ill. That just doesn't sit we'll with me, I want to be known for being a great writer not for being an ill writer. But I've got an insight above other writers my age so I suppose I should use it. It's a reason why I'll get published over someone else, and in the writing industry that's definitely something to use to your advantage. At least an autobiography is something to fall back on if I'm not getting anything published. 

I got my results back of my first year at uni and I managed a 2.1 in 3 modules but because I was ill quite a lot this year I missed one of the assessments so I've been busy writing an essay about my favourite authors and how they've influenced me that I unfortunately have to give in in hard copy at the uni so that's a little day trip for next week! And then when that's marked I'll get my result for the 4th module but I'm pretty confident I'll get a 2.1 for that as well because I got a first for the other assessment in the module so if have to flunk the essay pretty badly to not get a 2.1. So I'm really happy with my results seeing as I've been in and out of hospital a lot this year, had glandular fever and loads of chest pain. I'm hoping to get a few more firsts next year though. I feel like I have to get a first overall because my brother got a 2.1 so I've got to beat him! 

I've also been trying to start a story every week over the summer so I have lots of stories to work on when I'm back at uni because I've pretty much given in everything I've got for first year so I can't resubmit any of that. So I have to start a few more stories so I have a good bit of work to give in for my portfolios this year. I've also got an anthology of short stories for my short story module next year which I've been really enjoying. It's got short stories from all the famous writers in. I usually struggle to read things that I'm forced to read but I'm really enjoying this. It's got lots of advice for writers and stuff in which is really helpful and really inspires me to do some more writing. It's called 'Telling Stories' by Joyce Carol Oates if you're interested. 

I know I said the next post would be a part 2 of my life in operations but I've been really busy lately with all my other writing but I will get round to it, I promise!

Greetings!

Well, I've decided to start a blog. To be honest, I'm not sure why, other than, as a writer, I thought I ought to. I'm currently studying Creative Writing with Film Studies at university. "I enjoy writing" I thought to myself, "so why not start a blog?" So this is me, starting a blog.

As you may have gathered by the title of this blog, I have heart disease. And as a child I was, "the girl with heart disease." A generalisation that I will probably never escape. It's not only heart disease I suffer from, but a rare heart/lung disease, (it obviously couldn't decide which organ it wanted to destroy so went for both) which is called Pulmonary Hypertension. This is quite a difficult one to get your head around (unfortunately so are all my conditions). It is, in simple terms, the narrowing and tightening of the arteries in the lungs which makes it hard for blood to get through to be oxygenated, this creates pressure in the heart which has to work harder. My heart is rather strange. It has two left sides, two holes and a missing heart valve. I also have a condition where all of my organs, apart from my lungs, only have left sides and are located in odd places. I will be referring to the lung disease pulmonary hypertension as PH and my heart disease as CHD (congenital heart disease) from now on.

I have been assessed and possibly offered a double lung and heart transplant (assuming my tissue typing, which tells us what percentage of the population I am a match for, comes back okay). But I'm hoping this will be a long way off.

I'm currently doing well on a new medication called iloprost (I will do a full drug routine post soon) which has helped me be able to walk a little though I use a wheelchair a lot of the time. I'm currently struggling with severe chest pain and I'm off to the hospital on Friday to check there's nothing wrong other than the PH straining my lungs.

So this blog is going to be my thought on all the medical stuff so if you're interested stick around.

Have a lovely day!
Sara