Monday, 15 December 2014

Blogmas: 15th Dec: Christmas Movies

Apologies for the failure of blogmas but I'm in hospital waiting for my lungs to heal from the surgery I had three weeks ago. Unfortunately my lungs have become inflamed and possibly infected and I'm suffering with symptoms of a chest infection as well as pain and general unwell-ness. It's been a rough week and getting out of bed is still a huge struggle. 

Today one of my nurses has brought in Fred Clause, The Polar Express and Elf for me to watch while I'm in hospital. I've been feeling pretty down and all the nurses have been trying to cheer me up. They know me by now and they know it really isn't me to get so relentlessly sad. But to be honest and thoroughly sick of being ill. I've never felt so weak and unwell for such a long period of time. It's been three weeks since I was able to stand up without being filled with dread. I mean I'm not asking for the world. I just want to be at home and feeling reasonably okay for a significant period of time. The fact that life doesn't seem to want to give me that simple thing is really starting to wear me down. It's ten days till Christmas though. I still have time to get better and the fact I'm feeling well enough to blog is an improvement. I've not been thinking about Christmas because I'm so scared that I'm going to be unwell but now I've decided to just go with it. Better a Christmas feeling ill than no Christmas at all! Let's face it I'm going to be home for Christmas whether my doctors like it or not. I just hope I can get out of bed long enough to enjoy it. 

For this post I'm going to go through a couple of my favourite movies, which I'm going to be watching before Christmas to get me back in the Christmas mood. 

Frozen (2013)
I've stuck this in here because it's a great film to get started with when holding off till December is getting a bit too much. It's wintery but not too Christmassy that you'll ruin the magic. I love frozen. I love musicals and Disney films, and I'm also a fan of Indina Menzel and I love winter! So this film is perfect for me. I actually couldn't stop crying the first time I watched it because it was so beautiful. I had taken a little too much morphine at the time, but still. 

The Santa Clause (1994) and The Santa Clause 2 (2002)
It's just such a great idea for a film. Santa falls off a roof and a random guy ends up having to do the job of being Santa Clause. It's brilliant, funny and as Christmassy as you can get. 

A Christmas Carol (2009)
A modern film that is true to the spirit of the original book. The voices are just perfectly chosen and the animation is really exquisite. As someone who studies film, I can tell you that this is really something special. It is a little scary so not for little kids but definitely one to watch with a good sound system. 

The Polar Express (2005)
Another brilliant example of modern animation. It's a lovely, magical and imaginative story and really beautiful to watch. I really can't get over how good animation is nowadays. It feels almost more real than live action. Be prepared to fall into this magical story. 

Love Actually (2003)
I'm not usually one for sickly romance but it's Christmas so you have to make an exception. Love Actually is brilliant and with it's stellar cast there's something for everyone. It's a must watch at Christmas.

Miracle on 34th Street (1994)
My personal favourite! It's just so magical and feel good. I love the message of the film and I'm convinced that Richard Attenborough is actually Father Christmas. It's such a beautiful film, it's been my favourite since I was young and it still is. 

I've already watched Frozen and The Santa Clause but I'm saving most of these until it gets really close to Christmas. Miracle on 34th Street has to be watched on Christmas Eve. Obviously there are quite a lot more but these are the ones I couldn't do Christmas without. 

Sunday, 7 December 2014

Blogmas: 7th Dec: Decorating

I live mainly in the back room of our house, the conservatory, which we've made into a nice homely space. It's nice to be surrounded by windows rather than walls. It looks out onto our garden, which is pretty big so it doesn't feel like I'm trapped inside all the time. There's always lots of daylight and I can always see the outside world. We decided that now I'm out of hospital we're going to decorate it earlier than the rest of the house. As we get a real tree we can't put it up too early or it'll start dying before Christmas but I need some Christmas cheer so it's time to liven up the place! My Christmassy feeling has been a little dampened by my recent stay in hospital. It definitely needs rekindling with some Christmas cheer.

So I put on my first Christmas film The Santa Clause, and mum brought in all our new Christmas decorations. I attempted to help at one point but standing up didn't feel very nice so I sat on the sofa and told mum where to put it all. She'd bought me a little Christmas tree, fairy lights and decorations and I stole some of our good old decorations we usually put on the big tree. It looks really festive now and as it gets dark so early these days, it's nice to have some twinkling lights. Fairy lights are pretty posh now. We've used the same old ones for years, the ones where if a bulb goes the whole lot goes and you have to try a new bulb in all 150 plugs to figure out which one it was that blew! I secretly love doing stuff like that. I was that child who spent all day threading tiny beads onto strings just for the fun of it. There's something quite therapeutic about it. 

Now I've just got to write my Christmas cards and order all the presents and I'll be ready for Christmas! We've started getting Christmas cards through the door and I'm very excited. I only have about 6 people to send cards to so I'll have to find a way of longing out that particular activity!
Before all the hospital drama I wrote a little something for friend who's going through the same as me and blogging about it too. She posted some pre and post transplant experiences, including my experience, a couple of days ago, which are really interesting. It's certainly a good point that this festive time of giving is a great opportunity to join the organ donor list. Have a read at

Saturday, 6 December 2014


Last Friday I had an operation to fit coils in my lungs to stop a significant bleed. I won't shock you with pictures of the blood I coughed up because it looks slightly horrific and the Hollywood film industry decided a long time ago that any character who coughed up the smallest amount of blood would be dead by the end of the film so now everyone panics. They fitted 4 coils in the end and blocked off a portion of my lung, which is now very painful as the bit of lung is dying away. It's a particularly unwelcome pain as it hurts to breathe and I feel like I'm struggling with my breathing now. Partly because of the pain and partly because I feel so weak and unwell. My lungs take a long time to heal when they have been ventilated during surgery but I don't know how much of it is my body struggling to cope without the bit of lung that is now dying. The pain should pass, but whether I get all of my lung function back we'll just have to see. 

I feel like I've struggled a lot this time, even though in reality it was much better than my last general anaesthetic surgery and there was really brilliant care in the Intensive Care Unit but somehow I feel a little defeated. I think this was just one surgery too many for me this year. Five in a year is just ridiculous. I've probably spent over 3 months in hospital altogether this year and I'm getting tired of it. How much more bad luck does life want to throw at me? 

I always find the aftermath harder than the surgery itself. Coming out of hospital, although amazing and long awaited, makes me feel insecure and unsafe. It's a huge change and even though it's a good change, it unsettles me. I don't think I can really explain how I feel. I suppose it's normal to want to bury yourself away when things are going wrong and I think that's what I'm feeling. It's hard for others to understand when they can see you visibly improving. It's like your physical health and your mental health go in opposite directions. When you're too ill to think it's all so easy to cope with but the better you feel physically the more your brain realises how awful it all was and starts eating away at you. I am improving. The pain is much better and although everything feels so difficult, I am managing to walk and slowly climb the stairs and wash myself. It's only been a week, of course I don't feel back to myself yet. I'm doing really well, I just have to keep telling myself that. 

I guess you could say I feel a bit down. But I'm cheering myself up with the prospect of Christmas. Keeping busy is the best thing to do I think. I don't usually blog until this horrible feeling down phase has past because I feel under pressure to be as strong as people think I am but I really want to put this week behind me as soon as possible. It's time to cheer up and stick on some Christmas songs and movies. It's the most wonderful time of the year, after all. 

Friday, 5 December 2014

Blogmas: 5th Dec: Christmas Reads

The Christmas period is a great time to kick back with a good, easy reading book. It's December and everything must be Christmassy so here are my favourite Christmas reads.

The Night Before Christmas by Clement C. Moore
I've mentioned it before and it's a Classic. Every child must have this read to them on Christmas eve. Preferably a lovely old fashioned copy that is full of incredibly detailed pictures. The one I had as a child was illustrated by Douglas Gorsline but Christian Birmingham and Robert Ingpen both do some lovely, detailed modern alternatives. You might think children like cartoon pictures but all the books I loved as a child were beautifully illustrated.

Grimm Tales For Young And Old by Philip Pullman
This is a lovely collection of the classic Grimm tales, which as the title suggests is perfect for any age. The tales include some of the classics we all know and love along with many you will never have heard of. Pullman is one of my favourite children's writers. He has a wonderful gift for storytelling and it is shown perfectly through these short tales. It isn't strictly Christmassy but there are festive stories in there and I always feel like fairy tales have a sort of Christmas magic about them.

(Signed copy!)

The Christmas Tale of Peter Rabbit by Emma Thompson
I can't tell you how much I adore Beatrix Potter, her stories and her beautiful drawings. This new story by Emma Thompson retains the magic of the original tales in this special Christmas story full of beautiful pictures that are quite remarkably similar to Beatrix's own creations.

(Can you tell yet that my favourite module at University was Writing For Young People?)

(The Snowman (1982). Copyright Sony Pictures Home Entertainment)

The Snowman
Again, a classic. You can't have Christmas without the film but the book is beautiful too. I've called this "Christmas Reads" but I think I'm more impressed by artwork than anything else!

A Christmas Carol by Charles Dickens
This is probably the closest we're going to get to adult literature. This story has everything and explores both the light and shade of Christmas. Dickens is famed for brilliant characterisation and storytelling. We loved him back then and we still love him now. If you've never read a Dickens book, read this one this Christmas.

A Child's Christmas in Wales by Dylan Thomas
If you love words, you're going to love this one. It's beyond poetic. "All the Christmases roll down toward the two-tongued sea, like a cold and headlong moon bundling down the sky that was our street; and they stop at the rim of the ice-edged, fish-freezing waves, and I plunge my hand in the snow and bring out whatever I can find." That sentence just makes me melt. It's a beautiful read but the audiobook is lovely too so if you're pushed for time this Christmas and you love a Welsh accent this is one you can listen to. It is actually an illustrated children's book but there's no reason why anyone won't love it, and if you're Welsh, well it'd be rude not to!

Wednesday, 3 December 2014

Blogmas: 3rd Dec: Christmas Traditions

We all have those little festive things that we do every year without fail. We all want to hold onto the traditions of your childhood because we all know Christmas was so much better then!

The time when Christmas really begins is when Mum and I choose a Christmas tree and put it up together. We've always done it together and only when I was really small do I remember my brother and Dad helping. We're both really particular about everything. You have to have a real tree. You just can't do Christmas without the smell of pine. The baubles go on first and then all the little trinkets go on next. We have a lot of trinkets that don't all really match but they all have a little story behind them. I like my tree to have some character. We have a lot of other decorations too, candles and little nativity sets and angels. Mum always makes a wreath from some of the lower branches of the Christmas tree and we hang live mistletoe over the door. If there are spare fairy lights I'll usually put them in my room so it's all nice and festive in there too.

Since my Gran has lived out in the countryside, going Carol singing around her village has become a bit of a tradition. But obviously this year if I'm feeling unwell it might be difficult to do. I might just have to join in at the end for mulled wine and mince pies!

On the subject of mince pies, mum and I always have a tradition of making mince pies. When I was young I didn't like them so I used to make holly and star shapes from the left over pastry and put a tiny bit of mince meat on the top and then I'd get a nice festive treat without having to eat too much mince meat. I like mince pies now so we just make them but it's a fun tradition to do it together.

More recently going to the Christmas Market in Bath has become a great festive thing to do. They have lots of stalls selling homemade gifts. There's lots of food too, usually things that are a little bit different but still very festive. It's always really busy but it's a great place to get unusual presents and Bath is such a beautiful city, especially at Christmas. My boyfriend and I used to go while we were at university, my brother lives in Bath and my often often goes too so there should be a good chance of getting there this time.

As my mum's remarried we have a few new traditions to add in. Now, we always have at least three nativity scenes around the house and on Christmas Eve before we go to bed we add baby Jesus to the scene. The child in me just loves this and it's such an unusual tradition. The other thing I do every Christmas Eve as my own personal tradition is to read The Night Before Christmas. I know all the words now so it's mostly a case of reciting it and looking at the pictures but I've done it since I was old enough to have it read to me and it's definitely a firm tradition now.

When I was little my brother and I used to open our stockings in our parents' bed but now they both have new partners and we're older that would be a bit weird so we open them by the Christmas tree but always before all the presents under the tree. After presents my Gran, Grampy and Aunty come round for another round of presents and the most amazing lunch. In England our Christmas dinner is similar to American's thanksgiving meal. We eat turkey, cranberry sauce, sprouts, red cabbage, roast potatoes and parsnips, it's basically just the best roast dinner you can imagine. I know it's different in other countries. I met a Swedish girl at uni who said she had meatballs for Christmas dinner!

As I say, the last few years I've spent Boxing Day with my dad so that's a bit of a tradition now. The only year I'd planned to spend Christmas Day there I got glandular fever and ended up going on Boxing Day anyway. We usually have bubble and squeak (which is basically all the leftover potatoes and vegetables mashed up and pan fried. It's eaten with cold left over meat and pickles). It's the only time I have bubble and squeak so I always look forward to it. I open my second stocking (oh the joys of having split parents!) after lunch and then we all just chill out and chat. My other grandparents are usually there too, so I see all of my other half of my family.

And then that's Christmas gone! But we've still got nearly a month of merriment to enjoy first! I can't wait to get through my little traditions, then bring on Christmas Day! 

Monday, 1 December 2014

Blogmas: 1st Dec: Welcome to Blogmas!

I've decided that with the amount of spare time I have on my hands it would be a good idea to do Blogmas! If you don't know, Blogmas is a bloggers challenge to write a blog post for every day of December up until Christmas. Now, I'm cheating and doing every other day and I'll explain why. Day to day I'm not the most active person and half the time I just spend my day resting. I can drive but I need someone with me to push my wheelchair so I can't just go out and do something interesting whenever I like and I think if I blogged every day I'd just end up talking about how I haven't done anything and how tired I am. And that won't be very interesting. I want Blogmas to be engaging and all the posts to be Christmas themed. I'd rather do fewer posts that are good than more that are dull!

There will be 13 posts in all, the last being on Christmas Eve and I have a very special post planned for that day! Christmas is my favourite time of year so I'm excited to write about it. Updates on my life and the surgery I'm having, and will be recovering from as you read this, will go up as normal separate posts in between my Christmas series so I hope you've got some reading time on your hands this month! 

It's finally the first of December and I can officially be obsessed with Christmas. I've been trying to keep it in so far because I don't want to get too excited too early and run out of Christmas movies and Christmassy things to do. But I'm glad I waited now because what better way to cheer me up post surgery than a million Christmas movies and songs? Bring on the festivities!

I've already started ordering Christmas presents. I can't get out on my own to buy people presents so I'm doing it all online. I know what I'm getting everyone, it's just a case of ordering it all now. I've gone slightly over the top with presents this year but I figured I'm not really paying for much these days as I don't get out a lot so why not splash out at Christmas? And I think everyone deserves thanking for everything they've done for me since my health has really declined. Christmas this year means a lot to me because I feel like we all need to have a really good time, forget about heart disease for a bit and just enjoy ourselves.

Happy 1st December! I hope your festive month has got off to a better start than mine!

Thursday, 27 November 2014

Here We Go Again!

Yes, I'm back in hospital! And waiting for an operation on Friday (tomorrow). I know, I'm about as unlucky as they come! It's been about 5 weeks since my last procedure. This will be my 5th operation this year and 18th in my lifetime. Certainly getting my moneys worth out of the NHS anyway.

Last Thursday I started to cough up quite a lot of blood. About 25mls every 4-6 hours. By Saturday it was getting worse so I was admitted to hospital for lots of tests. Now they've looked at my CT scan (where pictures are taken of radioactive contrast in the bloodstream) and they can see a bleed in the middle of my right lung. They're not happy to leave it and I know from experience that these things rarely go away by themselves when it's my body. Last time I had this it just kept coming back until they fixed it. So I'm booked in for Friday to have coils placed in the bleeding branches of my lungs, which will hopefully seal them off. They don't really know how many they're putting in yet. They're just going to see what they find.

It's not a particularly huge operation but because it's me they're going to have me under general anaesthetic and they have a bed booked in intensive care for when I come out. It's going to be a long operation I think, because it's really fiddly. I'm going down really early in the morning and they're hoping to have me asleep by 9am so I think they're anticipating a long one. I am usually pretty rubbish at recovering from general anaesthetic and it tends to be worse the longer the procedure. My body doesn't like starting up again when it's been effectively shut down by the anaesthetic. It takes a good few hours for me to gather the energy to open my eyes and then it's a slow process of recovery. I'm stable in medical terms but it just doesn't feel very nice. But I'll be out of action for a while.

Now this messes up my blogging plans a bit because I have a lovely Christmas series planned! I think what I'm going to do is set up the posts to publish themselves automatically for the first few days as I will most likely be too ill to deal with it. I've had the foresight to write some in advance as I have a lot of hospital appointments this month and I was worried I'd be too busy to write all the posts I'd had planned. I'll have to write like mad now to get them all done but it's not like I don't have the time on my hands. So remember to check back on the 1st and 3rd of December for the first of these as I may not be able to update you from my Facebook page when these go up but as soon as I'm able to I'll make sure I remind you all.

Have a lovely weekend, do some Black Friday shopping and get ready for the festivities!

Blogmas: Dec: The Christmas Tag. Posted posthumously

I thought this would be a good easy reading post as I'll be honest I haven't done much to blog about for the last few days. If you don't know what a tag is, it's basically just a set of questions on a theme that people answer and then invite others to answer. 

1. What's your favourite Christmas film? 
It has to be Miracle on 34th Street, the 1994 Mara Wilson and Richard Attenborough version. It's just so magical and uplifting. I am saving it for Christmas Eve! 

2. Have you ever had a White Christmas?
No, it doesn't snow much in December in England. It's snowed on my birthday quite a few times in mid February but it mostly rains this time of year!

3. Favourite Christmas song? 
Probably Fairytale of New York. I think that's the most British answer to this question. It's not the most cheery of songs but I like my music a little bit sad. As a more traditional Christmas song I'd probably go for Have Yourself a Merry Little Christmas because it just reminds me of cosy nights in with hot chocolate. 

4. What's the best part of Christmas dinner?
All the little extras you don't get at any other time of year. Red cabbage, sausages wrapped in bacon, a mountain of sprouts and my mum does these amazing Parmesan roasted parsnips. Yummy! 

5. What is your favourite Christmas sweet treat?
Stollen cake! I could eat it every day but I only have it at Christmas or it'd ruin the magic. 

6. What's the best Christmas gift you've ever recieved?
I prefer to get lots of little presents but I think the year that sticks in my mind from my childhood was the year before I went to Disney World and my parents bought me almost entirely Disney themed presents. Mostly involving Eeyore from Winnie the Pooh as he was my favourite. That was a good year. I've had some amazing dolls houses and big presents too but I was too young to remember if they were birthday or Christmas presents. 

7. How are you at wrapping presents?
I'm pretty good. The trick is to cut the wrapping paper the size you actually need and not trying to fold up a huge amount of paper that then won't stick down with tape. I can do the snazzy scissor thing where you just push the blade a long the paper with no need to cut and I can curl ribbon. I'm a perfectionist so my present wrapping is definitely very neat. 

8. Do you make New Years resolutions?
No. I'm pretty determined so if I want to do something I just do it when I think of it, I don't wait for new year.

9. Do you stay in your PJs or dress up for Christmas Day? 
I don't sleep in much so I have to actually get dressed into pyjamas when I get up on Christmas morning. I open all my presents and then dress up for Christmas dinner. I usually get clothes for Christmas. I love having something new to wear on Christmas Day! 

10. Do you have a Christmas wish this year? 
Just that everyone has a lovely time and that I'm NOT in hospital! 

Monday, 24 November 2014

Going to University With A Disability

It's rare that I get to say that real equality exists within an organisation but at university I really felt like everyone was really understanding and everything I needed was done but not in a way that made me feel excluded. Obviously I'm talking about my experience at Bath Spa University and with Disabled Students England. You're experience may vary depending on if you choose to study in Scotland, Wales or outside of the UK and universities will obviously vary too, though I found it was external organisations that really did all the work. 

Firstly, you go to a meeting to decide what help you need. Now when I first started university, I was doing a dance degree and I went to the meeting thinking, there is no way on earth I'm going to get any money out of these people. How wrong I was! I receieved hundreds of pounds worth of electrical equiptment on the basis that it is hard for me to get to a library when unwell and a home laptop, printer, scanner etc. would help me in this area. As I have a hearing impairment I was eligible for a notetaker as I struggle to keep up with what's happening in a lecture or classroom setting. She became my support assistant when I started using a wheelchair and she got me to all my classes and made things a lot easier. Probably the most helpful of all, they payed for a portion of my rent as I said I'd had to pay more for en-suite accommodation due to my disability. I by no means had to ask for any of this. They just went through what a normal day is like for me and started writing up all the recommendations. Then it was all delivered to my parents' address along with a tech guy to set it all up ready for me to take to university. It was that easy. It's not like claiming for Disability Living Allowance where you're made to look like fraud and it seems like they're trying their best to give you as little money as possible. They completely understand invisible illnesses and if you need any mental help I'm sure they'd be just as accommodating.

From the university's end, I found them to be less helpful to be honest. My lecturers and notetakers were all lovely and very understanding. My notetaker met with me before lectures started to chat about my needs and they always ask if you want to be seen with them and if you don't they're happy to sit at the back and if you did have a lecturer who was unhelpful they'd be happy to talk to them for you. The disabled students department was frankly pretty useless and never got anything done without the orders of the woman I had the meeting with before university started. (BIG TIP: get their email address before you leave in case you have any trouble with your uni). 

As far as money goes you will be able to claim benefits if you are not working even if you are doing a full time degree, so you will effectively be earning a wage on top of your loans. You will also be able to claim housing benefits if you are struggling. I did both of these and although I was not exactly rolling in money, I didn't have to worry about paying for my next shopping bill or being able to afford to make visits home.

The help is much better than the help you get at school or any help you'll get going into work later in life. They understood my invisible illness like no other organisation has and I think they're pretty brilliant to be honest. Not perfect, but compared to every other area of life, they definitely give disabled people a fair chance and an almost equal opportunity. Disability is definitely not a reason not to go to university. Even if you think you might struggle in the workplace later it's a great experience that, if you're chronically ill, you will never have to pay for. I'm never going to pay my loans back because to be honest I'll be quite lucky to be healthy enough to work for long enough, even with my transplant. I went to uni for the experience, not the degree. I love learning and I felt like I wasn't ready to leave education yet. Uni isn't for everyone but I think it was the best decision for me and I hope to continue my course after my transplant. 

Monday, 17 November 2014

Do You Hate Your Disease?

The completely honest answer to this is no. And I know I'm going against the vast majority of sick people when I say this. I've heard the old "if anyone tells you anything different, they're lying" but I promise you I'm not. Diseases are quite rightly hated furiously by most people but the strange thing is that I've never felt it myself when I think about my own diseases. I'm not a hating kind of person. I feel like someone has won if they make me angry. I remember people asking Lynda Bellingham (a British TV actress who spoke out about dying of cancer before her death very recently) if she'd thought about all the people who had done her wrong. And she said "you don't." And I thought that was an odd question. Of course you don't, why on earth would you?

I understand why people hate cancer. I hate cancer. It's not something that such a deep part of your make up like heart or lung disease is. I was always going to be born with heart disease and I was always going to have lung disease. It wasn't a little piece of chance, a cell that mutated. There was no bit of bad luck that could just as easily gone the other way. My disease was written into my genetics from the get go. It is as much a part of me as my green eyes and my long toes. It's not an alien tumour that's growing inside me. It's my own organs

That is not to say I wouldn't prefer a life without my disease but I would say that I wouldn't change anything now it's happened because it makes me who I am. Who am I if not "the girl with heart disease"? I thought I might be alone in my lack of anger but everything Lynda Bellingham said in her interviews I completely agree with. She had it all right. There was not an angry bone in her body. And I think it's much better to live your life peacefully, rather than filling yourself up with anger at something you can't change. 

I think it helps that I don't think of my heart and lungs as diseased. I think of them as weak flailing young, birds just broken out of eggshells, premature babies with such delicate skin they're translucent. I don't imagine them as blackened smokers organs. They're weak and flailing but they're trying their best and I'm proud of them for getting me this far. They've done alright and they've survived an awful lot. I no more hate my disease than I'd hate the runt of a litter. In fact I'm more disposed to love the cute, little weakling than the puppy that's jumping around and chewing on my shoe.

Wednesday, 12 November 2014

The Strangeness of Not Having a Pacemaker

Up until a month ago I'd had a pacemaker as long as I could remember but now, very suddenly, I don't have one. I originally had my pacemaker after heart surgery caused damage to my heart and caused it to slow down and stop when I was asleep. Unfortunately my fifth pacemaker became infected and needed to be removed and as my heart is doing okay on it's own it shouldn't need replacing. So now I'm not battery powered I've noticed some changes. A lot of the strange feelings I'd attributed to my pacemaker "kicking in" turns out to just be my heart. But I'm definitely getting less weird feelings, which I take as a plus.

The biggest change I've found is my sleeping pattern. For as long as I can remember I've struggled to switch off. It was rare for me to take less than an hour to fall asleep. But now, without my pacemaker, it's suddenly so easy to sleep! I can lie down in a bed, close my eyes, and be gone in 10 minutes. If I'd stayed awake for three days I couldn't have managed that before. I've taken longer to fall asleep after taking sleeping tablets. Mornings are a bit easier now too. I'm still far from being a morning person but I feel less grumpy in the mornings these days. It feels less like I'm dragging myself into consciousness and just feels a bit more natural. Getting to sleep easily is really improving my anxiety levels too. I'd always end up getting worked up about something in the early hours of the morning or suffering from unpleasant flashbacks. But now I'm getting to sleep before I have time to start worrying about anything. 

It's also very strange not having a box in my chest. It feels like something is missing even though it sort of feels like something is still there because the muscle has been well and truly chopped up and there's a lot of scar tissue and mangled nerve endings so the area is numb in places and very sensitive in others and the muscle is sore and slow to heal. I think it'll take a long time to heal up and probably won't ever heal fully. It feels strange to touch my chest and not have that chunk of metal there, though. It feels very flat even though I still have some swelling that's yet to go down.  

I'm so happy that I don't need another one. The thought of more surgery scares me because my body is weak and it's a fine balance keeping it happy. Something like surgery really messes everything up and I feel like surviving that kind of invasion is becoming less of a certainty. Even after getting through 17 surgeries, I don't take it for granted that I will get through them. So avoiding more surgery is just the best possible outcome and I must admit it's heartening too that somewhere within all the bad luck I've had, some good luck survives.

Friday, 7 November 2014

Project: Weight Gain

Gaining weight is my top priority at the moment. I don't care how but I have got to get some fat and muscle on me because it's just getting ridiculous. In hospital I was nil by mouth 7 times and not feeling well on top of this really brought my appetite down. Now I'm out, I've been eating like mad and making a special effort to eat high calorie stuff. I've been adding butter to everything I can find, eating nuts and crisps and loading up on sweet potato. I have a new rule that whenever I think to myself, oh I don't feel like eating, I get a glass of whole milk and have that instead. I think forcing myself to eat is a bad idea as I'm prone to vomiting if I eat more than my stomach can deal with, but drinking milk means I still get the calories.

I'm learning not to fear throwing up but to eat until I'm a little over-full every now and again so that I can make my stomach grow a bit. I tend to feel pretty awful if I eat too much because the reasons I don't get hungry are that my lower belly is swollen with water retention (a symptom of my lung disease and general unwellness) and a very enlarged liver, which is caused by my heart struggling to pump blood around my body causing it to pool in my poor sore liver. You can actually see the shape of my liver pushing outwards in my upper abdomen. Both of these things mean that there's not much space for my stomach to swell so obviously I don't want to go pushing it's limits too hard as it's really quite painful and I don't want to make myself dread mealtimes. However, I think I'm doing quite well gradually eating slightly larger portions. I really do love food and anyone who knows me will tell you that I was always eating before my bad health took over. 

I'm currently putting all my food into a calorie counting app, which gives some other information such as fat, salt and sugar contents. My aim is to reach 2,000 calories as often as I can but 1,800 is my absolute minimum. To do this I have to have at least three sizable snacks on top of meals as well as glasses of milk and my calorie milkshakes. My favourite high calorie snacks are pistachio nuts, brie and crackers, bread and butter, pancakes, crisps and as a healthier option a bowl of hot sweetcorn with a little butter. Most days I still struggle to reach my target but I try as much as possible to keep the fat content in my food high while trying to get it from natural sources like milk and cheese rather than deep frying everything so that if I don't manage the calorie content at least I'm getting the fat. 

I really want to put on weight. Quite apart from needing to gain weight for my transplant, I really don't like the way I look now. I know, you'd think I'd have bigger things to worry about but it's still something that bothers me, probably more than it should. I'm more than skinny. I look malnourished and ill. I know people will think, "oh poor you, you're thin, how dreadful, I wish I could eat and not put on weight" and I understand that struggling with too much weight is a far more common problem but my weight issues are a problem for me. I feel like it's even effecting the shape of my face. Im okay, I'm not drowning in self loathing and it hasn't got to the point where I'm not wearing or buying clothes because they make me look skinny, it's just that I'd really like to be a normal weight if it's possible. My nutritionist has said that it might be impossible given that my heart is working so hard it needs all the fuel it can get. But I say nothing is impossible if you try hard enough. If 2,000 calories isn't working then we go up to 2,200 and so on. I'll start eating peanut butter by the jar and drinking calorie shakes like it's going out of fashion. It's happening, whether my heart likes it or not. 

To encourage myself, I'm posting a before shot. After Christmas I'm really hoping I look a bit more of a healthy, normal weight.
And this is the only before-before shot I can find. This was over a year ago. I think looking like this again is unlikely, but I can try.
I don't know how obvious the change is to people who aren't me but I lost over 1 and a half stone inbetween these two photos and those jeans don't fit anymore. Maybe that'll be my goal. To get back into those jeans! 

Wish me luck!!

Tuesday, 4 November 2014

I've Been Sewing!

I actually made this a while ago but with everything that's been going on recently, I forgot to do a post about it. I mentioned that I wanted to make my own pouch for my chrono pump, which I have connected to my central line 24/7 and pumps my medication directly to my heart. Well I did finally get around to doing that and this is the result. 

I used an old plastic pencil case for the little window in the front. I came up with this idea after I forgot to switch my pump on one day. The pump is silent and once slipped into the pouch that comes with it, it's impossible to tell if it's working. So I thought a window would be really handy as I would be able to notice any problems straight away. I prefer to hand sew so the whole thing is handsewn. It's lined with the same blue flamingo fabric, which I bought online and is a thick upholstery fabric so it protects the pump quite well. 

I put in a pocket, the perfect size to slip my phone in but it turns out my phone interferes with the pump quite badly, causing it to shut down and meaning I have to rush home and make a new batch of medicine as the only way to get it working is to take out the battery and put it back in, which makes the pump reset and you can't carry on with the same infusion. So if you have the chrono PCA pump, keep your phone away from it! 

Just a quick post as I wanted to show you my hard work and if you get a glimpse of the pouch in my photos you'll know what it is now! 

Sunday, 2 November 2014

How to Survive in Hospital

After my recent four week stay in hospital I thought I'd share some tips on how to survive in hospital. 

1. The first huge thing is to get yourself a pair of earplugs and possibly a sleep mask and keep them in your handbag so if you're admitted in an emergency you know you have the tools to create quietness and darkness. I've stayed awake all night before now. 

2. Bring some home comforts. I'd suggest you bring your own pillows as you'll only be given one in hospital and they aren't the comfiest things. Small ones are good after surgery to prop yourself up into a good position that keeps the weight off any sore spots. I usually use a teddy bear under my arm to make my pacemaker site more comfy as they're softer, nicer and designed to be hugged! 

3. Bring your creams. It might seem like a strange luxury for hospital but I find my skin gets very dry and my elbows particularly get dry and sore from the stiff, starched sheets. It really feels good to put on some nice face cream, some good scented body creams and a good heavy duty dry skin cream for those extra dry bits (try a cream designed for ecsema or dermatis, although nothing medicated as they will lock it away if they see it.)

4. Find a bath and throw your bubble bath straight in. I find baths so much easier for keeping chest wounds/cannulas dry. Run it shallow if you're worried and relax. Get all the sticky residue from plasters and ecg stickers off and you'll feel so much more human. I brought in Lush bath bombs and came out smelling of flowers. It really makes a difference when you have to stay in for such a long time. 

5. Don't be afraid to ask for things. Ask to go down to the hospital Cafe for an hour or even outside if you feel up to it. If you're uncomfortable ask for a different mattress or for a cannula to be moved into a more comfortable place. Usually, nurses are only too happy to help. 

6. Load a tablet with stuff to watch/listen to/play. Most hospitals have free wifi. If that's the case, I recommend subscribing to Netflix or LoveFilm even if it's just for the time you're in hospital. Sign up to Spotify or an equivalent to listen to music or find a radio app. Download catch up service apps for the channels you watch most. If you don't have Internet then you can always buy films to keep on your tablet. Check any DVDs you own as some come with a digital copy, which you can download onto your laptop or tablet without having to repurchase. Find a mixture of games that use Internet and simple games you can play without as some parts of the hospital where you may be waiting for tests might have poor or no connection. Just don't forget to pack your chargers and go over your settings so that your device's battery is not being drained by anything running in the background. 

Some other essentials! 

A variety pack or a box of your favourite cereal makes breakfast a bit more interesting. A little squash bottle is super handy to jazz up your water, which isn't the tastiest or coldest tap water! Lip balm is a must, a like a nice smelly one you can put on your oxygen masks or tubing to mask the smell of plastic. If you're set on doing your own meds a useful tactic is to use pill boxes so the doctors don't have any choice other than to let you do them yourself because none of the nurses will know which drug is which. You come across super organised too and they know you know what you're doing so they'll be much more likely to be happy with the arrangement. 

I think that's all the tips I have, I hope some of these might be useful if you have to go to hospital for any reason. (Although I hope you don't!) 

Thanks for reading, updates coming soon but I'm enjoying being home! 

Wednesday, 29 October 2014

I'm home!

You'll probably notice that I've been a bit quiet and I hope you've not been worried. The main reason for this is that every time I thought to myself, I'll start writing my blog post about this, a doctor would saunter in to my room and completely change the plan. Even I was pretty confused about what was happening by the end of it so I thought I'd just wait until after it was all over and explain it to you then!

Yes! I'm home and reasonably recovered from a second lot of surgery. A week after my pacemaker came out, my surgeon became worried that the bit of pacing lead he ended up leaving in because he couldn't fish it out may have become an infection risk. He decided he needed to have a last stab at getting it out. Unfortunately my body decided that wasn't going to happen and I began spontaneously coughing up blood just as my surgeon came with the consent forms. My pressures are so high in my lungs that random blood vessels have a habit of bursting. Small vessels heal up on their own but bigger ones need surgery. I've already had this surgery once and was really upset that it was happening again. They hoped to get me into surgery the next day, which was a Friday, but the team was too tired and they thought it was a risk starting at 5 0'clock in the afternoon. So then we had to wait for the weekend to pass and then nothing happens on a Monday in hospitals so it was Tuesday by the time we had another plan to do it. 

Tuesday at 9am I was on the table, strangely calm, waiting for all the iodine on my neck and chest to dry. Yes, I was awake! Thank god it was such a better experience than I'd had before with local anaesthetic. It went exactly how it was supposed to. Why I wasn't given any kind of calming drugs for my previous surgeries I will never understand. I was actually asleep for most of this operation, which was a good thing as they worked at it for three hours. They had a catheter (long tubing) in my neck, flowing through the heart and up into the artery where the lead was lodged. I could see the x-ray film on the screens as they tried to grasp the two inch length of lead but it was just too embedded in scar tissue that they couldn't even get a hold of it. Thanks to the heavy drugs and the lovely technician holding my hand and to my surgeon who talked me through the operation it was no more trauma than a long nap and a bee sting, which was all I felt as the anaesthetic went in. Admittedly waking up with the time 12:40pm on the machines made be a little concerned at what was taking so long but I'd barely opened my eyes and the technician was there telling me everything was okay, they couldn't get it and that they were stopping now. 

I went to recovery, scoffed five custard creams and a cup of tea with mum who was very worried that I'd had another awful time as I'd been in there a total of nearly four hours including prep time. You almost can't believe the patience of a surgeon taking three hours staring at an X-ray and trying to grab this little piece of wire with his little tool. I have a great deal of patience but even I would struggle to concentrate that long on something so dull. 

As soon as I was back on the ward some 20 minutes later, I asked for morphine and slept like a baby for nearly 24 hours surfacing only for toast and tea and morphine. Unfortunately, the bright spark who wrote up my morphine wrote me up for 5mls, an adult dose when I'm clearing the weight of a 12 year old, not to mention already dosed up on stuff from the operation so it took a long time for me to stop feeling drowsy. But as soon as I did feel better, on Thursday, they sent me home! (After 7 hours waiting for pharmacy to print a label!!!)

So I'm home now and well and truly worn out! Going to bed at seven, asleep by nine and sleeping through till seven or eight in the morning. I'm working hard on getting the calories again after a lot of nil by mouth days in hospital while they couldn't decide when they were doing this surgery. I'm no longer coughing up blood, I'm finishing my antibiotics today and my heart is working well without a pacemaker. And I want all of that to stay that way, thank you very much! 

It's been a long month in hospital and I'm so happy to be home. But I thought it'd be a lot closer to Christmas by the time I was home so now I'm home and it's not Christmas I'm a little disappointed. I won't be wishing my time away though. Winter is my favourite time of year and I'm going to enjoy the leaves falling, Halloween and cosy nights in on the sofa.

Sunday, 28 September 2014

Pacemaker Problems!

This update is a little late but I've been in hospital, dealing with all the news and not quite feeling up to writing about it. Today, I'm feeling better and have had plenty of time to get my head round everything.

So with my usual display of bad luck the healing of my new pacemaker was pretty slow and rubbish. I wasn't too worried at first but then a blood blister began forming over the scar and in fear of it popping and causing an infection I went along to hospital and they admitted me. They were too scared to do anything at first and left the blister to pop, which opened up my scar and made it really hard to keep bacteria out. It was covered up for a few days while I waited for my surgeon to see it and when he did he found a deep hole and actually caught a glimpse of my pacemaker through the wound. Not good! So the pacemaker needed to come out. My body was rejecting it and physically trying to push it out of my body. (Yes, ouch!). It took him a while to decide what to do because putting a new pacemaker in would just cause another infection and because I have a central line of the other side of my chest we were in a bit of a pickle. The first surgery was cancelled as usual and I ended having it done on Friday, over a week after I'd been admitted. 

He took the old pacemaker out and all the leads. Unfortunately the leads broke as he was getting them out and as my anatomy is quite strange they couldn't get it out. My surgeon had to call another surgeon for a chat and they decided it was safer to leave it in as it's inside an artery. The surgery took about 5 hours in total and I was quite unwell when I woke up as my lungs were very unhappy with being ventilated so long. My oxygen levels are only just getting up to 70% after a few days of struggling to hit 55%. My body is full of fluid and I'm achy and sore but slowly improving. Good news! I might not need another pacemaker as my heart seems to be working fine without it. I'm so pleased as I was really unhappy with going through more surgery because I just don't feel strong enough and it's just going to make the transplant less likely to be completely successful. I'm too ill for this stuff now. And putting in a new pacemaker would mean an extra surgery to move my line also. If they do find my heart is getting a bit tired they'll wait as long as possible for a good recovery before they do it. But fingers crossed!

I've been practically bed bound for four days but I'm getting better now and able to move around a little. I think I'm on the mend now. But I can't tell you how strange it feels to not have a lump of metal in my chest! I've had my pacemaker since I was 3 and it does feel like I'm missing something. But I'm definitely happy not having it back and enjoying having a nice flat chest. Very grateful to my surgeon for doing such a neat and careful job, so much so that I have very minimal bruising and pain. 

I'll be in hospital for the next week to 10 days having super strength antibiotics to blast away the infection, getting a little more active as well as keeping an eye on my heart to make sure it doesn't do anything funny. I should be back to regular blogging soon! 

Saturday, 20 September 2014

Clinic Day

Yesterday I went to my Pulmonary Hypertension clinic and they were all really happy with me. I've been feeling good on the new medication, Flolan, and now my pacemaker is running at full power I'm feeling a lot more awake. 

We talked about my hair falling out and they suggested some multi-vitamins might help. They said it's actually normal for hair to continue to fall out after you start feeling better from a long period of illness. It takes a while for your hair to catch up. However, it might be the cocktail of drugs I'm on too. None of them really have hair loss as a side effect but together they could be having that effect. So it might go away, it might not. We'll just have to wait and see.

I've been feeling really tired and getting muscle aches when I put up my flolan dose and as I've been doing it every other day for the last week, that's been making me feel really rubbish. But we chatted about that and it's normal. Flolan can make you feel like you're coming down with the flu when the dose is put up. No idea why a drug that opens up the blood vessels does that but it is pretty strong stuff. Now I know it's definitely that I can be a bit more clever about when I decide to up my dose. I want to aim for once a week but I can work around times I know I'm going to be busy and need a bit more energy than normal and make sure I've got at least the next day to rest once I put it up.

The day before my Flolan pump's battery had completely died without notice. It's supposed to start telling you it's low way in advance because you have to make a new batch of drug, which take 20 minutes to make up, as the pump resets when you replace the battery and it won't just pick up where it left off. Unfortunately we were in a shopping centre and we started hearing this high pitched ringing noise and we were convinced it was the shopping centre's lights or tanoy system going mad and we were wondering around for half an hour until we got back to the car, shut the door and could still hear it. I checked my pump and flat battery warning was up and it had stopped infusing. I was off the drug for about an hour, maybe a bit longer, which is pretty dangerous so they told me in clinic to send the pump back to get it checked out because it should have given me warning, not just completely died without notice. 

They checked out my pacemaker site and although they were a bit shocked at first at the amount it's swollen they said it wasn't infected and the swelling would go down but it would probably take a good few months. But I was a bit worried that the swelling would just never go down so I was happy to be told it would eventually. My specialist nurse has a pacemaker so her saying that was very promising. 

After that we went for our usual nice lunch and overall had a nice day. I've got Papworth next week so hopefully they'll be pleased with me too. Everything seems to be going okay at the moment. Hopefully it'll continue. 

Tuesday, 16 September 2014


I never know quite what to say when people say "oh you're so brave!" It usually follows something like "I couldn't have done that" or "well done for getting through it." What does that mean? Congratulations, you have not spontaneously combusted from fear during your experience. Surely that's the minimum requirement for getting through surgery - that you get through it. Time passes, no matter how much distress you're in and from my point of view all I did was let time pass. 

I know I'm not alone here. Most people with chronic illnesses or people who have gone through a huge trauma feel confused by the term. It can tend to feel like people have set a standard of emotional wellbeing that you then have to try to maintain. You can't cry all over someone when they've just told you how brave you are. Like most people in my position, I don't feel brave. This is normal for me, and I don't have a choice. If you're a fireman and you find that the stress of the job is too much, you can quit. But I can't choose to stop being ill. Sure, I can punch my surgeon in the face and walk out and refuse to come back but I will either bleed to death if he's already started or once my pacemaker stops working, die from heart failure. So really, I don't have a choice. In the moment, it really does feel like you're just existing so I don't see why a phrase like "you got through it" is supposed to be a compliment. You don't die just because something is awful. 

Okay so I probably sound like I'm being grumpy and not appreciating a simple word of kindness but not at all. I understand that people are being kind and I feel like my whole thought process on this subject has helped me to feel less awkward and confused when someone says "you're so brave". The thing is, that's not actually what they're saying. They're not trying to evaluate how well you've coped with the trauma. What they're really saying is that they understand and empathise with the awfulness of what you've been through and they want to assure you that you're doing well and even if you're not, that's okay because actually that experience was really awful. 

So my conclusion is this. To well wishers, be aware that people who've suffered a trauma may feel a sense of pressure to be mentally okay when you tell them that they're brave. It can feel like you're setting a standard or trying to avoid any situation where they're telling you how upset they are. But to those who've been through a trauma, try not to over think this. They're trying to be nice. They're trying to let you know that you're doing well and that they understand the awfulness of what you've been through. And understanding and empathy is something you always need, however much you might hate to be pitied, don't block people out. Of course they're concerned and they want to feel like they're helping a little bit. Try to think of it as a small act of empathy and you'll feel a lot more comfortable with being called brave. 

I'm not one of those people who hate to be pitied. Because I don't hear pity, I hear empathy and empathy is one of the best things about being human. Take it as a small piece of kindness. Don't let illness or trauma turn you into someone who gets offended by every little bit of kindness someone tries to show you. No, they don't understand what it's like to be you, but they're trying and that means everything. 

Tuesday, 9 September 2014


I went on my little holiday/vacation last week to the seaside town of Weston-super-Mare. We were really lucky with the weather. As I come out in a rash in the heat, I was happy it wasn't too hot, it was perfect for being all out day for me. We spent a lot of time outside! We had a beach day and visited the pier, went to the aquarium and had a look at the sand sculptures, which were really amazing.

How they manage to make these out if ordinary sand I have no idea! But they were all brilliant.

We went to the theatre while we were there and saw a really good play called 'Double Death', which was a bit of a crime mystery. It was really clever and I liked how all the objects from the game Cluedo were props on stage. The dagger, the candlestick, the rope and the others were littered around the stage. It was really clever and reminded me a bit of the Agatha Christie stories. 

We had a day at Noah's Ark Zoo Farm in Clevedon, which was a kind of cross between a zoo and a farm. You could feed the chickens and the goats and hold rabbits and gineapigs (which made me really miss my little rabbit! I miss having live things to cuddle!) but they had lions and tigers, monkeys, zebras, giraffes and two new elephants, one of which had only arrived the day before. It's such a great idea to have them together because although zoos are great it's frustrating, especially for children, that you can't get right up close or touch any of the wild animals. There were groups of nurses and patients from old peoples' homes and lots of disabled children so I think it must be well known as a good place for wheelchairs. There wasn't anywhere we couldn't get to, which sadly is a rare occurrence at places like this! The restaurant was terrible but we had plans to go out for an evening meal anyway so we didn't want to fill ourselves up. 

On the way home we stopped in Bristol and had a shopping day. I popped into H&M for a basic cardigan as it's getting colder and my pacemaker is still sore so getting jumpers on is a bit of a struggle. I also got some bath bombs from Lush to save for a rainy, cold day. We had a great meal in TGI Fridays, which is an American themed restaurant, for those who don't know, so unlike the grumpy old British the waitors there are really lively and friendly. We had a lovely Italian waitor who was practically bouncing off the walls with enthusiasm and we really liked that. They do tapas in there now, which is perfect for me as I don't eat much but I still get to try lots of different things. 

In other news my pacemaker is still hurting. I got the stitches out last Monday on the way to Weston and the actual wound has healed really well but it's still really swollen and sore over the actual area of the pacemaker. Apparently it's, not exactly normal, but nothing to worry about. It'll go down eventually but it's going take a long time unfortunately. My chest is still bruised and isn't fading much either but it'll heal one day! I'm glad the wound is okay anyway. That's the bit that could get infected so it's important that that heals quickly so I don't get any nasty bacteria in there. It's definitely getting less painful and that's the main thing. It's just hard to remember not to move it too much now as it's only very painful when I move too much or over-stretch it. The thing I'm finding annoying is I seem to spend a lot of my time changing dressings because I have my line and then I have my pacemaker wound too. I don't think it's quite ready to go without a dressing yet but I can probably be less careful about being sterile soon. The stress of not being able to scratch your face for twenty minutes is not fun! 

This week I'm looking forward to the Invictus Games, which is a kind of Paralympic Games but only including injured armed forces. It'll be great to see those suffering from mental and invisible illnesses competing alongside amputees, which I think is great because it'll make people understand a bit more about invisible illnesses and injuries. Just because you've got all your limbs doesn't mean you're not disabled. Obviously watching disabled athletes can make your average disabled person feel like they should be achieving more but I'm just glad to see more disabled people on tv. I feel like it might help attitudes and perhaps change the sad truth that disabled people are far more likely to be victims of crime than normal people. This should be televised in all countries taking part so give it a google if you're interested in watching some of it and don't live in the UK. There will be some sports that you won't have seen it heard of before, created specifically for disabled athletes, so it's worth a look. 

I have lots of blog ideas piling up so I'll be back soon! 

Wednesday, 3 September 2014

To My 16-Year-Old Self

For my 16th birthday my mum bought me a book called 'Dear Me, A Letter to My 16-Year-Old Self', which has lots of letters written by celebrities and popular figures addressing themselves as teenagers. I was recently flicking through it and thought, that'd be a bit of a fun blog post to do and a bit of a different way of tackling the old 'dealing with a chronic illness in your teens' issue. So that's what I'm going to do. Just a bit of background, I was actually at my healthiest at the age of 16 but I still struggled with the prospect of my disease impacting my life in the future. Not being able to dance at some point, not having children, and I really developed my fear of death in these years. I did however have a pulmonary embolism when I was 16 so it wasn't a time free of catastrophe. Hopefully that'll make the majority of this letter make sense to you.


Happy Birthday from your 21-year-old self. If you're reading this then your future self must discover magical powers, so be sure to look out for that. Here's the advice. Keep doing what you're doing. Don't be tempted to "fit in". People spend the whole of school trying to fit in and the whole of university trying to define themselves as unique. It turns out you're a few steps ahead everyone else.

Secondly, smile. You always knew the value of a smile. Smile at everyone and anyone. It's been proven it makes you happier and it makes those around you happy too. You don't have to be bubbly, embrace your shyness, but definitely keep smiling. And keep dancing because that will make these years the best years of your life. Enjoy it. Throw yourself into everything at Ribston - moving schools was the best thing you ever did.

Carry on writing that book. It turns out your good at writing (who knew?) but you still need all the practise you can get. Carry on living inside your head, daydreaming and talking to yourself because it feeds your creativity. 

Your feelings on not being able to have children and generally being ill will get easier. You're beginning to realise what's happening to you and it's scary but you'll accept it. Having a chronic illness is enough to make a grown (wo)man cry let alone a teen. Trust me, you're handling it brilliantly. But please, stop googling your disease.  

That horrible feeling you get in your stomach, that's anxiety and it's completely normal. It's the body's way of warning you that something is happening that has hurt you in the past. There's no quick fix here but stop getting anxious about getting anxious and you're halfway to coping with it.

You're right to dislike your doctor, you're not just being a grumpy teen. Don't let him scare or upset you anymore. Focus on all the good things and learn to accept the bad. Think of your disease as a part of you rather than some horrible parasite destroying your life. I'm going to stick in a Harry Potter quote here, "only with acceptance can there be recovery". That's what you have to do, accept all the things that are happening to you because hate and dispair for your illness will destroy you. It might have done a lot of bad but it's done some good too because you wouldn't be who you are without it.

You'll be pleased to know that I have no regrets. Just be happy. If you take no other advice, take this - be happy!

Best wishes, 
Sara x 

If you're interested in this little book I would definitely recommend it. It's a nice thoughtful, funny read and with letters varying from two sentences to pages in length it's great to pick up for a quick read. It was a great 16th Birthday present too! 

I hope you enjoyed this different post. It's not always nice to think about yourself at a tough time in your life but it felt good to write it all down.

Saturday, 30 August 2014


During the last three days, I've finally seen an improvement to my pacemaker site. The bruising is much better on the actual pacemaker but has spread over my chest. It's still swollen but I think that's going to take a while to go down. Now it's not as painful and I'm moving more it feels extremely strange. The pacemaker feels very loose and moves around constantly. It feels very strange! I'm in that annoying stage where it hurts when I move but not so much when I'm still so I forget and go to pick something up and get quite a shock of pain. But I'm happy it's healing. I tend to heal quite suddenly so not seeing any improvement for the first few days was starting to get me down.

I went to get my stitches out on Wednesday but it turned out it wasn't so much stitches as one big stitch. The well experienced doctor who was looking at it had never seen one like it before. It's one long piece of plastic string with beads at each end to hold it in place. I have no idea what purpose it's serving as I can't see how a long straight bit of string is holding my skin together but somehow it is. Anyway, when she took the dressing off it bled a little so she and another doctor decided it was best to leave it a little long rather than risk any more bleeding or damage. So I'm having to go back on Monday now. I'd have preferred to get it out of the way but if the wound isn't ready there's nothing to be gained my risking it. 

I saw one of the cardiology doctors while I was there and she apologised for my experience. She said they had a meeting about it and they all agreed that letting someone cry their way through surgery without giving them any painkillers or sedation was unacceptable and that it was particularly horrible considering my age. It turned out that the doctor who did the surgery was not the one everyone had agreed on and so he didn't know that my lung disease was going to be a problem for sedation and pain relief until the last minute where he just decided on the spot it was best not to give me anything. Where as the original surgeon would have been given more information and guidelines on my particular case and could have spent a lot more time deciding what was safe as well as sparing me pain. Just like the line insertion I had and every other mistake that happens in hospital, it was a lack of communication. I could complain but all I'd get is a letter saying exactly what the doctor told me on Wednesday. They can hardly give me a gift voucher to spend on another surgery to make up for it. They know they messed up and I hope my surgeon got a good telling off for handling it so badly when it was clear I was in so much pain, claiming it was just my low pain threshold. No pacemaker, no opinion mate! 

Anyway, I'm off to Weston-super-Mare (an English seaside town) on Monday with my boyfriend for a much needed break. Unfortunately I have to get my stitches out on the way but Bristol is pratically on the way to Weston so it won't add too much time to the journey and I might be grateful from the break from driving. 

I'm really looking forward to the break but fear not I have been organised and written a blog post in advance for next week. So hopefully I'll remember to post it! 

Thanks all your support and comments. I feel like I'm well into recovering now. 


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