Big decisions!

I think I finally feel ready to write about what's happened the past couple of weeks. If you've read my last post you'll know I had quite an eventful birthday, well after that I went home for a while and was just too tired to get out of bed most days and standing up was exhausting. So we phoned my specialist and within a few days I was in hospital. Due no doubt the the vast amount of blood I lost on my birthday my haemoglobin levels were down so I had a blood transfusion and some more water tablets to keep my liver a bit more comfortable. They explained that the reason I'd been feeling so grotty and breathless was because of a sudden worsening of my Pulmonary Hypertension, (which has a bit of a habit of doing that) which caused my heart to struggle resulting in heart failure. In short my heart just isn't gathering up the strength to push blood around my body. This causes a backlog of pressure and blood, which is pooling in my liver, making it swell and because the liver is enclosed in a kind of capsule containing a lot of nerves, it's making me pretty uncomfortable. However the water tablets are helping a lot with the pain even though my upper abdomen has swollen like a balloon. The liver is then pressing on and possibly inflaming my stomach, which explains why I had been feeling sick and generally not the slightest bit hungry for the last few weeks. Unfortunately I'm still unable to eat meals but I'm trying to keep up my weight by snacking as much as possible. 

It isn't great news that my PH is getting worse and that my heart is failing as not much can be done about either of those. There are pills that can help with heart failure but as long as my PH is putting so much pressure on my heart, the problem is going to be hard to manage. I'm through all of the PH medication they can use so the only option now is a double lung and heart transplant. I felt a little numb when they told me that. I found myself only shedding one or two tears before suddenly feeling very calm. At that's point, although I'd been to Papworth hospital before, I didn't really know what a transplant would mean for me so I tried not to think about it too much as the only thoughts I had were questions that couldn't be answered until I met with the team at Papworth.

After a week in hospital, I went home to await the call from Papworth. My doctor must have done a good job at pressing the urgency of the situation because it was only a few days until we had a call to say they'd fitted us in to a cancellation the next week. Meanwhile my lower abdomen had swollen and I was actually in A&E when we got the call from Papworth. I had started retaining fluid in my abdomen, making it swollen and sore. Yet another problem to add to the list! Fluid retention is a symptom of pulmonary hypertension so it's just another thing to deal with. It's uncomfortable but it looks like I'm pregnant, which I don't like. It's typical of me to be loosing weight and getting fat at the same time! Only me! 

We had a nice drive in the sun down to Cambridge and stayed in a guest house for the first night as we had to be at Papworth at 9.00 the next day. The next two nights I spent in hospital. The first day I had some of the smaller tests, x-ray, bloods, the usual and then we went to see the post-transplant nurses to discuss all the problems of the operation and aftercare. And boy are there a lot of things that can go wrong! Okay, so I knew transplant surgery is probably the most dangerous kind of surgery around but I didn't really expect so much bad stuff. She'd just finished talking through the side effects of all the pills, which include kidney failure, osteoporosis, diabetes - to name a few! And then she said, "right now onto the bad stuff". What?? That wasn't that bad stuff! Then it was all doom and gloom, the possibility of your airways closing up after surgery, the almost certainty of getting acute rejection in the first year, which requires hospitalisation and a major amount of medication, the infection risk of having a suppressed immune system. There was so much bad stuff I was feeling quite flat after the first day and pretty sure that unless the surgeon was sure I would live a lot longer after the transplant that I wasn't going to have it done because it just wouldn't be worth all the pain and horror of the surgery and then the aftercare. 

And - wait for it - I won't be allowed to eat cheese! What is life without cheese? I can have cheddar because mostly that's gone through all sorts of processes so it isn't high in bacteria, but no Brie! Baked Brie with cranberry sauce has to be one of the best things to come out of a kitchen. Also no salad bars, takeaways, any kind of red meat that isn't really well cooked (I mean what is the point of a steak without the yummy blood in the middle!) and runny eggs! (You literally can't eat eggs unless they're hard boiled - ruined in other words!), You've got to be so careful about what you eat. I mean going to a restaurant and having a salad, you have to worry about whether they've washed it properly, whether the salad dressing has raw egg in, if you have a pasta - is there raw egg in that, what cheeses have they put in it? I'm in love with food - can you tell? Joking aside, it probably will be a massive pain in the bum but I'm happy to trade in cheese for feeling healthy.

Back to the serious stuff. I had another day of tests before I saw the surgeon. These were the tests I was most worried about as they included breathing and exercise. The two things that had become extremely difficult in the last few weeks. However the nurse testing me was really lovely and understanding and gave me lots of rests during the lung function tests, which involves blowing into a machine (easy for you but my lungs really don't like it!) and he didn't push me too much on the walk test either. I managed to walk a little bit just to show them how bad it was. At this point I was seriously doubting they'd say I was fit enough to survive a transplant because once you get too ill the risks of the surgery are just too much for a sick body to handle. 

The next day was by far the best of the three days. We saw the surgeon and he was really confident that they could do the surgery and that the results would be good for me. He said the death rate of the surgery would be 15% but that once I got through the surgery and the first few weeks we were looking at 10-12 years of life. It had become clear by that point that I'd be extremely lucky to make it that long considering how ill I am now and how quickly I my condition has deteriorated. In fact the doctors are slightly concerned that the 2 year waiting list for transplant will not be long enough for me. But I've been known to be a bit of a wild card where health is concerned and I've beaten the odds many times before. I think I'll be fine. Most things are in my favour. I'm a common blood type, I'm small (small heart and lungs come up more often) and I'm bloody lucky! I have some weird antibodies, which means that a few heart and lungs won't be suitable for me but mostly the odds are in my favour for getting a transplant within the next two years. It varies a lot. The shortest time anyone has been on the list is four hours but a lot of people die on the list too, so it just all depends who happens to die to become a donor and whether or not you're the person who is a match. 

Some other good news was that, even though my heart is really deformed, they reckon they'll only have to recreate one artery in order to get a normal heart into my body. This is mainly because the heart and lungs come out of the donor as one organ, all connected up and ready to be attached into the patient rather than two separate pieces that need to be fitted into the jigsaw. All the arteries they need happen to be in the right place in my body except this one big one. However they said they can take an extra artery from the donor and do a bit of clever stuff to make it work and it shouldn't add too much time to the surgery, which was the big problem in the past as the longer the surgery the worse the survival rates generally. They have a lot of problems with electrical malfunctions in the brain if you're on a heart and lung machine too long. Obviously the less time you don't have two major organs missing from your body the better! 

After that I was feeling pretty confused as I was so against the idea of transplant after the first two days. I think the nurses could tell I was unsure of what I wanted because they offered to find me someone who'd had a transplant so I could chat to them and ask any questions. As luck would have it, someone who'd had a transplant to combat PH was there at that moment and free to talk. It was good really that she hadn't had the smoothest of transplant experiences because she said even after all the horrible things that happened to her, and she had a lot of problems most transplants don't involve, she said it was completely worth it for the quality of life she has now and even if it doesn't last the ten years they predict, the quality of life makes it worth it. Of course, everyone goes back to dying eventually, and most of the symptoms are the same as PH and heart failure, and there's a certain level of "delaying the inevitable" when it comes to transplants, but hearing that it's worth it to feel healthy again, even for a short time really swayed me when deciding what I need to do. The way I see it there's a, if not 100% then a good 99% chance that I'll die and in the next couple of years if I don't have the transplant, so suddenly that 15% (which works out at around 1 in 7 people) doesn't seem such a huge risk. I know 15 is a low number but that's pretty much how risky operations get. It's considered really high risk and usually they won't carry out any kind of surgery if it's over that number. And when you take it down to 1 in 7 people you can understand how big of a risk it really is. And when I think the chances of me actually having PH in the first place is 2 in a million people, 1 in 7 starts looking pretty scary. And that's just one of my diseases. I like numbers. I always get doctors and surgeons to give me numbers because it helps me make sense of things. In this situation though, I'm trying not to think about the 15% too much and go with my gut. I know the transplant is the right thing to do, so I'm going for it, because for the chance of 10-12 years (possibly more if they come out with some swish new drugs in the meantime) it's worth the risk. I think positivity is really important. If your mind and your body want it enough then you've got a much bigger chance of making it happen than someone who has given up. I'm sure it works. How many times have you heard of dying people hanging on until some long lost relative comes to visit, and then dying moments after they've seen them. I'm sure it's possible to will yourself to live! 

So I've officially made my decision. I rang Papworth this week and as soon as they have all my blood results back, I'll be making the trip over to Cambridge to sign the papers and then within a week of that they'll ring me up so say I'm officially on the list and my transplant can happen at any time from that point. Someone has actually waited only four hours before now! But it's most likely going to be around the 18 month to 2 year mark. They only do around 5 double lung and heart transplants every year so it really just depends on what donors come up. That's compared to over 50 heart transplants they do each year and I think the number for double lungs is around the same. So it's not a huge number! Which is slightly scary but I guess it's the same thing as doing them separately really, it's not like the surgeons are going to be out of practise! I have made the decision to not accept organs from over 55 year olds and the reason for that is because there are always new treatments coming out and if they suddenly say, oh you know what we've come up with this amazing new drug that completely cures rejection, I'm going to have a limited lifespan because I have organs that are already old and likely to give out within 20 years. Obviously if nothing changes then that's fine because you'll be lucky to get 20 years but I live in hope that they will figure something out for rejection and I'd hate to die thinking, if only I'd had young heart and lungs, I could have 50 or more years to live. They rarely use heart and lungs from people this old because it's rare for older people not to have damaged their hearts or lungs so I'm not cutting out many donors and I think it's a sensible decision because you never know what's around the corner what with stem cell therapy looking so promising. 

So my plan for the time I'm going to be on the transplant list is to sit around, watching films, doing some sewing, taking up knitting, writing, maybe trying to get my writing published, getting out in the countryside as much as possible, perhaps go to a few museums or zoos or castles that are on my doorstep but for some reason have never been too and maybe a weekend away in the summer and just generally chilling out. I'm definitely not going to be sitting around feeling sorry for myself! I'm also going on a new IV medication that unfortunately means I'll need a Hickman line but will hopefully make me feel generally more comfortable and stop my PH getting any worse because the transplant will be off and I don't want that. Hopefully I'll get the call to go up to Hammersmith in London to have my Hickman line put in (the ward nurses at my local hospital won't be familiar with this particular drug and how to mix it and hook it up to the line so my doctors decided it was safest to send me to London where they're really used to dealing with it and most importantly teaching the patients to do everything because a new infusion needs to be attached every 12 hours so I need to know how to do that at home). Until then, fingers crossed I remain stable, because if I get much sicker the transplant will be too dangerous and I won't be able to have it. And hopefully the transplant comes quite soon! Although I think 4 hours is a bit too quick! 

So a lot has happened this month! And a lot has changed but I'm still here, little old me and my blog. It would mean a lot to me if you all took a moment to appreciate the ability to walk and to breathe, and to live with the prospect of time stretching out in front of you. Not to feel sorry for me, but to feel good about your own lives. And maybe if you're deciding whether or not to buy those diamond shoes, this might give you the push to go for it. You only live once! Now have a nice cup of tea and put your feet up. I'll write again soon! 

Iceland and Birthday Adventures

I hope you'll excuse my lack of posts recently, it's been quite a busy month, to say the least! I actually wrote this post a couple of weeks ago so I hope you won't mind being a bit behind the times until I feel like I can write about what has happened to me more recently.

As I hinted at in my last post I had a rather special birthday week planned. I was off to Iceland to see the Northern Lights! Well, 'best laid plans!' but the main thing is I managed to get there. I went on holiday and had a brilliant time! Better than that, we saw the Northern Lights three times! The bad news is that I was unfortunately not feeling very healthy for the majority of the trip. But in a few months time, I won't remember how ill I felt, I'll only remember the brilliant things I saw and above all the Northern Lights, which I've been dreaming of seeing since at the age of thirteen I read Philip Pullman's Northern Lights and read his description of the phenomenon. We saw them first from the plane just as we were approaching Iceland, I had the most perfect view of them from my seat and being so close I could see exactly how the green bands of light were quivering in the sky. It was beautiful! You can certainly see where Philip Pullman got the idea of the Northern Lights being a portal to another world. The next day we went on a special trip to see them, and after the tour guide spent twenty minutes telling us we probably weren't going to see them, I shouted out that they were right ahead of us. We stopped on the top of a mountain and managed to watch them for a few minutes before we were blown away by the bitter wind. It looked particularly special with the silhouette of the snow-capped mountains on the horizon. Then we went off outside of the city, to a dark hillside where we could sit in the couch and see them from the warmth, which was brilliant for me as standing out in the cold and the wind was starting to have an effect on my chest. We were there for three hours and the lights were showing the entire time. We were very lucky to see them so much. We didn't manage to get our own photos of the lights because you have to have your camera set up just right to be able to capture them and we decided it was a better use of our time to sit and watch them rather than fiddle about with cameras in the dark. The tour guide took lots of photos and she emailed them over to us so you'll be able to see how wonderful they were.

As you can see, they are pretty incredible!

The next day, we were only there two full days as we landed late on the first day and set off very early on the last day, we went on a trip around the Icelandic "countryside" where they have a distinct lack of greenery. It's mostly desert land at this time of year but apparently the whole landscape is covered in green moss in the summer but they don't have much in the way of flowers or trees. We had a private tour in a taxi as I wasn't feeling too well it would be a lot easier than a whole day couch trip, which would have worn me out a bit too much. At this point my breathing was very bad and I couldn't stand up without getting breathless and all my muscles were floppy and useless. We saw the main cites, the geezers (I stayed in the car for that one) and the waterfalls, which were amazing.

On the plane back though my breathing was getting ridiculous so we went straight to A&E as soon as we got back, which was about four 0'clock in the afternoon despite leaving the hotel at five in the morning. I mentioned in my last post that my 'women's problem' had gone mental for the last few weeks and while it slowed down just before I went on holiday, it started again on the first day in Iceland. I had lost such a vast amount of blood that I was very anemic and my heart was really struggling to keep up, which was causing fluid to build up in my lungs and causing me to feel pretty run down and breathless. So they wanted to keep me in overnight. I wasn't brilliantly happy with this as the next day happened to be my 21st birthday. But there wasn't much I could do about that, I needed to be in hospital so my mum and boyfriend brought all my presents into hospital in the morning and arranged a steady stream of visitors for the day. Unfortunately my body had other ideas for the day. I'd just managed to open all of the lovely presents and cards my mum and boyfriend had brought in when my stomach started to ache and I was starting to feel a bit odd, lightheaded and just not quite myself. I thought maybe I just needed the bathroom but after sitting on the loo for ten minutes the pain just seemed to be getting worse. By the time I was back in bed it literally felt like my stomach was about to split open, or like someone had stuck a vacuum into my stomach and was sucking up all my organs. It was the most pain I've ever had, much worse than both my Pulmonary Embolism (which had previously held the title of most pain ever) and my Lung Haemorrhage (which surprisingly didn't hurt much, but sounds quite extreme) and the times I've had my sternum broken open during open heart surgery, not to mention all the chest pain I get, I would say I have quite a good pain threshold but I was screaming like a baby with that stomach pain.

I must say doctors are surprisingly rubbish at dealing with ill people, considering that's quite a big portion of their job. The doctor they got to take a look at me just said, 'stop screaming and tell me what's wrong' as if it was that easy. My mum and my boyfriend were standing right there and he didn't think, oh she seems a bit preoccupied at the moment maybe they know what's going on! I think he was a bit out of his depth as a cardiac doctor and called the gynecology doctors who were in the middle of surgery so couldn't come down straight away. They gave me tramadol, oramorph and IV morphine, which I can't say had much impact on the pain but made me so exhausted I couldn't scream as loud. They moved me to a private room (funny how those rooms suddenly become free as soon as you start making a noise) and kept me drugged up too much to know what was going on. Then the gynecology doctors turned up and did what I will describe no more than 'examined' me (ouch!) and said there was so much clotted blood in my womb that my body had started having child-birth like contractions to try and push it out. Even though the pains weren't coming and going like contractions, all the muscles involved were doing the same thing as they would with contractions. They went up and pulled all the blood out (ouch again!) and it instantly felt a whole lot better and I was able to rest a little before effects of the morphine started making me feel extremely sick and drowsy. I managed to console my Gran for a while, who had turned up most unluckily at the height of my pain and then had to listen to me scream from down the corridor while the doctors were sorting things out. I opened some more presents and cards before falling asleep. I spend the rest of my 21st birthday dozing, throwing up and crying with happiness that I wasn't in pain anymore.

The people on the ward were lovely. The other patients banded together and bought me a birthday cake and then came into my room in their dressing gowns and sang happy birthday to me. When I got moved to the gynecology ward the patients there too were lovely and wished me happy birthday, one of them even came up and consoled me when I was upset because the nurse had just completely ignored me when I was throwing up and crying. The nurses were a bit mean really. It's a shame because so many of them are lovely, but I had a run of three not very nice nurses and a few useless doctors who couldn't really deal with me when I was in pain. I think they should focus more on the caring aspect of a nurse, I feel like the hire people as long as they know their stuff, but it really harms your recovery if you're constantly upset because of how the nurses are treating you. It particularly bothered me that the last hour of my birthday was spent being upset at my nurse rather than a real, unavoidable problem.

As you can see I was pretty chipper while opening my presents! And my lovely bear came in handy for hugging while I was in hospital. 

I'm still weak and breathless at home now and am in contact with my specialist who is a bit concerned at how quickly they let me go home, only the day after I'd had all my pain and bleeding. So I might end up in hospital again this week as my chest pain is worsening and I have no energy at all. And I still can't stand up without feeling out of breath. It's a massive effort to get up to go to the toilet, I actually have a seat with a bucket in my room now because getting across the landing is too much of a drain on my energy and my lungs just don't have the capacity for that kind of exercise. I'm not going to lie - it's really horrible. It feels like my whole body is screaming at me when I get out of breath. It's not like when you go for a run and do a bit too much and have to stop to get your breath. It's like I've just jumped into a pool of ice and every nerve in my body is screaming "what are you doing???", when all I've done is put a pair of leggings on. I hope that makes sense, I'm just trying to say it's not like normal breathlessness, it's like my whole body has gone into shock. So obviously I'm avoiding getting out of breath as much as I can because the feeling is really not very pleasant at all. I'm managing okay though. Watching a lot of tv and staying in bed some days with my iPad, looking on YouTube and catching up with tv on BBC iPlayer. Say what you want about technology ruining the world but it sure does come in handy when you're disabled and ill and can't get out and about. 

So life is on pause for a while, no doubt I'll be back in hospital soon and finding out whether this breathlessness is going to be a permanent thing or whether this is just how life is going to be now. I hope I haven't depressed you too much, maybe read the nice first paragraph about the northern lights again before you go, then grab yourself a nice cup of tea and your favourite biscuit! 

(I'll be updating you on the rest of what's been happening as soon as I can find the words! I'm hoping inspiration will come in the next few days!) 

Updates

Long time no speak! I know I've been a bit quiet recently but I've been so busy I haven't had much free time. But on the plus side, this should be a nice long post as there's lots to fill you in on.

Firstly, my chest pain really hit it's peak last week so I'd been battling with that for a while before realising that it was further down towards my diagram than it usually is and that my upper abdomen was tender to touch and swollen. So I went off to a&e last week and spent the day there. They did lots of tests but couldn't find anything wrong. But eventually they got hold of my specialist who said it was probably pain from the liver. The liver is encased in what's called a liver capsule, and it has lots of nerves in it, so what my doctor thought was happening was that the high pressures in my heart or lungs were pushing on the liver and that's what was causing the pain. He gave me a water tablet to get rid of excess fluid, and that seems to have helped a lot and I can manage the pain well with morphine. The only time it really gets near as painful as it was is when I'm bending over my laptop for long periods of time. Which isn't very useful at the moment as I have a ton of work to do for university, and has obviously made writing blog posts a bit difficult too.

I've had three essays and one presentation to do this month so I've been working like a house elf trying to get those done. I managed to get an extension for one of them so as with chest pain and tiredness I just couldn't manage all three of them. I managed to finish two film studies essays though which are marked as part of a portfolio with the presentation. I got really excited when I found out we only had two assignments for film studies but the sneaky lecturers put three assessments into one! Some real pain went into doing those as leaning over a laptop and loads of film theory books all week has had it's effect on my chest. But anyway, I've done all that now. All ready for a special Birthday week, which you will hear more about later. *wink, wink*

The day after I got rid of my chest lucky little me decided to throw up another pain. I had a serious amount of women's problems, which hasn't been fun. But I managed to get some medication to calm it all down ready for my birthday adventures, which requires me to be a bit more active and a bit further away from the bathroom than I'd usually be. There's been a good few times I've been curled up in a duvet crying "why me?" this week. Seriously why does everything happen to me? It feels like life hasn't given me a break recently. Well it better be planning to be giving me a break this week or I'll have something to say about it!

I'll leave you on the happy note that I'm about to go out with my lovely boyfriend for Valentine's Day and then off for a lovely weekend watching all my old baby videos, which my mum had copied to DVD just in time for my 21st Birthday. And then I'm going to be having a rather special birthday week, a lovely birthday meal with my mum and my lovely grandparents and another lovely birthday meal with my dad and then probably a week in bed recovering! But it's going to be a brilliant week and I'm very excited!


Happy Valentine's Day!!

Body Confidence: Be Proud of Your Battle Scars!

Dealing with new scars on your body isn't easy for everyone. I've had scars for as long as I can remember and they've never bothered me a huge deal but during my teenage years I did start to feel a little insecure about them, especially as I was dancing during that time and my dance uniform showed them off quite a lot.

I realised last time I did a blog post about scars I didn't actually put in a picture of my own scars, which was a bit naughty of me really when I was telling everyone to not worry about them. These are the best pictures I could get while still preserving my modesty! The first one is my pacemaker scar, and as you can see the pacemaker is pretty visible as a lump under the skin, in the second one you can see my heart surgery scar, which you can see in the third one goes all the way down to my belly button because I had surgery on my abdomen after my heart surgery so they carried on with the existing scar.








(You have no idea how weird it feels putting a picture of your belly button on the internet!)

It does surprise me how much people stare at my scars when I'm talking to them. I don't really think about my scars much so the only time I'm aware of them is when they get stared at. But I definitely think the staring was worse when I was a teenager and was around other teenagers. So if you're that age and becoming insecure by your friends and classmates staring, trust me it does get better as you and the people around you grow up. I think people stared at my scars, if not everyday, every other day, but now it's quite unusual for it to be as common as once a week. Everyone starts feeling insecure about themselves at that age so it's natural for everyone to be looking at each others bodies to try and figure out what "normal" is, so don't just assume they're thinking something mean. The thing about people is, they're far more likely to be thinking about themselves and how they're acting and how they look and their own insecurities than they are going to be judging or thinking about you.

Scars are an inevitable part of living, whether it's a little mark from a pimple you picked at a little too enthusiastically, a scar from falling down some stairs when you were a kid, or a huge open heart surgery scar, they're all a part of you and a part of your story. You can't and shouldn't wipe out a part of your history just because it's unpleasant. That goes for stretch marks too, I have stretch marks over my hips and bottom because I was really underweight as a child and I didn't have much of a bottom at all, so when I went through puberty, I grew outwards really fast and the stretch marks appeared (Yep, stretch marks happen to petite people too!). Even though they haven't got nearly as interesting a story as my scars, I still don't dislike them, to be honest I'd completely forgotten about them until I thought about writing this blog post. We should just be glad our skin is able to stretch that well, it would be much worse if it started cracking and bleeding! The same with scars, they're not painful or unsightly, besides people pay hundreds and sometimes thousands of pounds to scar their body with tattoos to remind them of their past, you've got an awesome one for free that will always remind you of that operation you survived. Just because scars aren't as fashionable as tattoos doesn't mean they aren't as meaningful or beautiful. Not to mention giving you a bit of a head start when it comes to dressing up as a zombie for Halloween and coming up with awesome stories about your scar actually being from a shark attack for your nieces and nephews. And girls, don't worry, most guys find them cool, you're definitely not going to be missing out on any dating opportunities because of your scars. Men aren't idiots, they know the beauty industry is not an accurate representation of female beauty better than most of us do!

I never think about my scars when I'm buying clothes or choosing what to wear. I don't feel any less uncomfortable when they're on show and when they're not. Even when I was choosing dresses for my school prom, my scars weren't something I was considering. Although, I remember when I was reading Harry Potter for the first time (probably around the age of 8) I had a dream where I walked up to the mirror of erised and I saw myself without any scars, so maybe I was more aware of it than I remember but that's pretty much the only memory I have of wishing I didn't have scars. When I was a teen my best friend had scars too and we chatted about it. So, if you're a teen and feeling uncomfortable about your scars, just chat to your friends about it, I promise you that no one cares about them as much as you think they do and you might find out that someone else has a scar too.

I'll be putting my pictures up on my Instagram to show everyone that scars are nothing to be ashamed about or self conscious of. (check out my new instagram feed on the side bar, and there's a link to follow me there too!)

I hope this has helped you to feel better about any scars you have!

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! 

Living in the Grey

I know I usually do a lot of posts about what we might call the lighter side of being disabled, because I think there's a good amount of humour there and it involves a lot of things that most people don't know about disability. However the subject I'm posting about today, I have never seen covered before, in blog, tv or magazine. So it's not too far away from what I usually write about in some respects.

Life to a lot of people is black and white. The longer I've been ill the more I can see this statement as being true. Humans like putting things in boxes, black and white boxes most of them. There are those who are disabled and there are those who aren't. Unfortunately life isn't that simple. Where do I fit into all of this? I am disabled, but it's my engine that isn't working to full speed not my kinetics. My legs physically work, I can physically put one step in front of the other. You could watch me walk down a corridor or up the first few steps in a flight of stairs and think me no different from any other person. But look away for a minute and look back and you might well see me clutching my chest for breath.

In day to day life it does not bother me that people don't know I'm ill. Why should it? Everyone wants to be treated equally right? Everyone wants to be perceived as normal. But there are people in my life who are not my close friends or close family, people who don't see me everyday but know me well enough to approach me in a public space, maybe go for a coffee or chat for a bit in the street. It's these people who bother me. You can almost see the confusion in their faces when they look upon me in a wheelchair in town when I was perfectly capable of walking from the disabled parking into the lecture room the other day. I don't know why it's so hard for people to understand that I have an illness which means I have good days and bad days. One day I might feel well enough to walk from my car to the lecture, sometimes I may not have a choice if I don't have carer with me to push me (wheeling yourself around is far more exhausting than walking!) and another day I might have a carer with me, oxygen on my face and be confined to the wheelchair for the day. But in any case, it is not difficult to imagine that someone may be unable to walk around town for hours or around a supermarket with their shopping, but can walk a little way into a lecture hall or up some steps into a shop. Surely I am in the same position as a young toddler in a pushchair, I can't be expected to walk all the way around town but it shouldn't surprise everyone that I can stand up and put one foot in front of the other a few times. Unfortunately I do get funny looks when I get out of my car, apparently healthy and then get into my wheelchair and I have had abuse from people when I've parked in a disabled bay. I got fully blown shouted at by a woman in a Mcdonalds car park because I'd pulled up and forgotten to put my badge up straight away.

I understand that society labels people and that being "semi-disabled" isn't currently a label. But it does create a bit of an identity crisis for people like me. I've given in, I don't mind being seen in a wheelchair or being considered disabled. But I know people in a similar position to me who reject the label and try valiantly to keep walking everywhere, to never be seen in a wheelchair or wearing oxygen because they feel like a fraud, because they're not completely paralyzed so it's like they don't feel right considering themselves disabled. And as painful as it is to admit it, I can see exactly where they are coming from when I think of the looks I get in public places when I stand up. I think we all fight the lazy stereotype. I went through school being called lazy by my friends and even teachers for not doing p.e. or saying no to walking down to the shops, or getting a lift home from school even though for sixth form I was at a school that was practically a road from my house. There's a sense of having to prove yourself, prove that you're not lazy, that you're normal or that you're disabled, because the truth is you're not any of those.

The fact that it isn't a huge bother to me isn't the point. There are other people like me, and there are people a lot younger than me who struggle with this identity crisis and when it's reinforced by people you know and like it can be very confusing. The name of my blog is a nod to the identity crisis everyone goes through being a teenager but for me was complicated by being 'the girl with heart disease'. I've embraced it, because it's a part of me, and if you are struggling with the same, that is my advice to you. Just be who true to who you are. It's okay to be different and it's okay to want to be normal.

I don't think the whole disabled identity crisis has been covered properly before, at least I've never come across anything written about it before. I wish I'd had someone to talk to at the time. I hope children's hospitals invest in nurses who can deal with the emotional side as I think it would have helped a lot. I don't know how much of what I was feeling I understood at the time, but just someone saying it was normal would have helped me a lot. So to anyone out there who knows a teenager with some kind of sickness or disability, tell them from me that what they're feeling is completely normal and you'll come to terms with it on your own soon but talking to someone will make it easier.