Tuesday, 22 October 2013

Palliative Care Again

So I had an appointment with my palliative care doctor today to try and get some good pain killers for my chest pain. She didn't really know what the chest pain was but agreed that it was probably my pulmonary hypertension. Whether it's the effect if the pressures in my lungs or the effect of my lungs having to work harder. She did say it could be the iloprost but I'm not sure because the pain doesn't seem to get worse after I take it. She said it could be something to do with the stomach also because the pain is right at the bottom of my lungs so it could be something else. You have to be careful not to get fixated on the lung disease and just assume it's the lungs. I've had problems with my abdominal organs before now. 
She didn't get any tests done because I'm going up to Bristol early November and it's best not to have too many x-rays if you can avoid it. They aren't dangerous really, but when you've had at least two a year for the whole of your life, the radiation starts to mount up a bit. There's no point having one in Gloucester for them to do new ones in Bristol in less than three weeks. 
Anyway, she offered me a man made version of the oramorph, which tends to give people less side effects than the conventional form. I haven't tried it yet cause I have to drive back to Bath this afternoon and I don't want to risk it making me feel too drowsy to drive. There are lots of options if that doesn't work. It's just a case of finding the right painkiller for me. I'm glad I'm starting to get sorted on the pain killer front because I feel like my chest has got worse in the last few days. I'm hoping this new morphine is going to work. I'm falling a bit behind on my uni work. I think I'll have to spend tomorrow sending apology emails to all my tutors as I've missed a whole week of lectures now and I haven't recuperated at all. My palliative care doctor couldn't really help me on that apart from making sure I get a good night's sleep. Trouble is my pacemaker isn't very good at slowing my heart rate down enough to sleep. She said that was normal though so at least I feel less weird now. I've hallucinated whenever I've tried sleeping tablets so I'll just have to stick to camomile tea. 
I'll keep you posted on whether the new morphine does the trick.
Thanks for reading :) 

Thursday, 17 October 2013

Feeling Down

I got really down tonight. I had a plenary class at uni, which usually just involves a writer coming to talk about their work, give us tips about the industry and getting creative and things like that but today we had a graduate come in and talk about her career since leaving uni. She was aiming to be a writer and producer for big feature films but at the moment she was working on some films independently and getting into the industry by working on tv and film sets. She is a runner, which is basically just someone how organises all the backstage or behind the camera things. Now I would absolutely love to have that job. That would be one of my dream jobs. I've wanted to be a backstage theatre manager ever since I did some backstage work at one of the shows at my old dance school. I was only in one dance so I mostly did all the backstage stuff and it was really fun. You get all the rush of being a performer, running around getting everything organised but you just don't ever go on stage. It would be my perfect job, and I reckon I'd be really good at it too as I'm good at organising things. 

But the job involves a lot of running around. If someone isn't on the side of the stage at the right time, if a prop isn't there, you literally have to run around trying to find what you need. Depending on what your role is, you might have to go around all the changing rooms giving people the time they have until they need to be on stage. I don't think you could do it in a wheelchair because most theatres are very old, there are stairs everywhere and the corridors are narrow and usually half blocked with props and racks of costumes. I think holding down any kind of full time job is going to be near impossible. I'm hardly at uni 3 hours a day and I'm thoroughly exhausted. And it's too much to hope the an employer will be flexible about all the time off I'll have to have for hospital appointments and varrious illnesses and catastrophes that my life tends to contain. 

I don't know, maybe there is a way I could volunteer backstage at some kind of theatre because I think I'd enjoy it so much that I wouldn't care if I wasn't getting paid. I just don't like the thought of staying in all day, doing nothing and then wondering why I'm not getting any inspirations for my writing. 

It just got me feeling a bit down about what I can't do and that surprised me because I'm usually really positive. I guess everyone has those down days. Perhaps it was just that I wasn't expecting someone to come in and talk about the kinds of jobs I can't do because I'm doing a writing degree and however ill I am, I can sit in bed and write. I should just be happy that I'm good at writing and there's a good chance that I'll be able to make a career out of it, however small. But is it wrong to want more? 

I'm going to try and do something with my days when I finish university, even if it's just for fun, and maybe I could do some volunteering work at a theatre, or something similar. Because I hate the thought of sitting around all day trying to write. I want to do as much with my life as I possibly can while I'm still well enough to do things. I don't want to loose that drive. Of course I'll carry on writing, writing will be my main goal. But I need to do other things to feed my creativity and my drive. Virginia Woolf calls the mundane, everyday chores of life cotton wool. That's what I don't want. For my life to be full of cotton wool. Because no one wants to read about cotton wool. 

I've said cotton wool to many times now and it's gone weird on me. Cotton Wool. 

How Hospital Made Me Weird

Managed to get a few minutes to myself to brush up this post I started writing a few weeks ago. Enjoy and feel free to laugh at my strange ways! 

I'm into a bit of amateur self psychology. Every time I have a weird dream I try to figure out what part of my confused brain put the events together. But I think a lot of the weird things about me stem from things that happened to me in hospital. I'm not talking about mental breakdowns, just little quirks of my nature that will probably be amusing to read about. I thought this would be a good funny post anyway.

Perhaps the most obvious quirk of nature which originates from hospital is my fear of masks. I'm talking about the plastic party masks, ones that pretend to be a face. They just really creep me out. The more cartoony they are the worse they scare me, particularly when they cover the mouth and the mask has a really wide cartoon style smile on. However really realistic ones, like the goblin masks in Harry Potter don't bother me at all because they don't seem like masks so much. Anyway I think this came from the surgeon's masks as they cover the mouth and I think that's the thing about masks that creep me out. You wouldn't think masks come up in your life that much but it's quite surprising how much it does. I think I see a mask on tv or in someone's picture on Facebook on average about once a week. And Halloween is really not fun! I don't know when this fear came because I've not always had it, it seemed to just come out of nowhere at some point in my childhood but I'm sure surgeons are to blame. 

The next one is sort of a good one. I think because of the endless list of doctors and nurses that have seen me naked, I have no insecurities about my body at all. The only thing I don't like is that my leg hair grows insanely fast, but I could easily keep on top of it if I could be bothered. Considering I grew up dancing where everyone is really conscious of their weight, their size, their height and everything because it affects what kind of dancer you can be. To be ballet dancer you have to be around 5'6" in height, have long legs, a flat chest, high arched feet and all sorts of things like that, it's surprising that none of the body obsession rubbed off on me. I don't know if it's the amount of people seeing me naked and not making a big thing about it or just because I have bigger things to worry about. I suppose I can blame heart disease for the things that I could hate about my body, the fact that I'm really skinny, that I'm short (there are cases of identical twins where the child with CHD is about a foot shorter than the child without), that I have scars etc. But none of it bothers me at all. Perhaps it's more comforting to be able to blame it on something rather than just having to accept it. I'd hate to not be comfortable in my body. I'm really glad that I turned out this way. 

After constant consumption of calpol and other strawberry flavoured medicines, I now can't drink or eat anything that's strawberry flavoured. Worst are things that are really sugary like strawberry milkshakes. Tastes and smells have strong connections with memories. The smell of oxygen is another thing that makes me want to gag because of all the times I've felt ill and been given it as a child. They had to resort to tying it to my teddy when I was little in the hope that some of it would waft into my face. I don't mind the fresh oxygen that comes in tanks, that's only got a really subtle smell but the oxygen that comes from oxygen concentrators smells like a mixture of car exhaust fumes and melting plastic. Everyone I know who's used it said it's completely bearable, but I can't stand the smell at all.  Which is pretty annoying because I could do with being on oxygen quite a lot and ordering oxygen tanks is a massive pain because the oxygen company my gp uses is rubbish. But I'm thinking about seeing if my palliative care doctor could arrange a better system because my gp has tried all it can but the oxygen company are having none of it. 

I'm not sure if this is a good one or not. I never feel like I was a proper teenager. I had to grow up really quickly because just as I was turning a teenager was just when I was finding out a lot of things about my illness and my future. I went through a bit of a difficult year when I was about 13 when I found out everything, and I was bullied a bit at around the same time, so I had a bit of a down year but then after that was all sorted and I got my head around everything I felt a lot more grown up. It's like I did the whole teenage thing in one year. I guess it's a good thing because I felt like I was pretty happy as a teenager and I'm sure if you asked any adult what part of their life they'd want to skip it would probably be the teenage years. I think a big part of it is I've always been very aware of my own mortality, and I think the thing about the teenage years and university student age is you just don't really think about how much bad food you're eating, what smoking is doing to your lungs and what drinking is doing to your liver. Although I guess the fact that adults do all of those things means that that theory doesn't just apply to teenagers. I've always thought of myself as mature for my age. Perhaps my brain is trying to fit all my development into my life expectancy. By the time I'm 30 I'll be knitting surrounded by cats. 

This is probably the weirdest one. I really like order and being in a really controlled environment like a school. I always wanted to go to boarding school when I was little because it seems like a really safe place to be because you don't have to deal with the world much. I'm a bit of a hermit! It must be really unusual for a creative person to like order because creativity is so messy! I guess this is because I have a lot of decisions and problems do to with my health and I like the thought of not having to deal with it and just having someone just say right this is what's happening. Even though that obviously wouldn't work in practise. I'm not a natural leader, lets say. I'd make a good minion. 

The next one is quite annoying. It's that I can't get to sleep unless I'm in a room of perfect silence and darkness. I'm really fussy about the conditions in which I can sleep. I can't have a ticking clock in my room because that annoys me. I can only have the fan on if I wear ear plugs and I have to have it on a low setting because I hate my hair blowing into my face; I hate anything around my neck and face. I reckon this is because of all the nights I've spent in hospital, which is like sleeping outside how noisy it is. Especially when I was in the children's hospital where there are babies crying and toddlers screaming round every corner. Hospitals don't really value a good nights sleep. The nurses talk loudly in the corridors all night, they don't turn the lights out till 11 if you're lucky and then wake you up at six for blood tests and even if you don't need any tests they wake you up for breakfast not long after. I struggle to sleep in the day because obviously darkness is hard to find. I suppose spending a lot of time trying so sleep in a noisy, loud ward should have made it easier for me to sleep in a semi-dark quiet room. But unfortunately that didn't happen. 

I think this one is really understandable. I hate gruesome or violent films. I don't mind the odd thriller, the odd crime drama but those really gruesome films like the Saw franchise or films like that I can't stand at all. I'm sure this is because they're often really clinical, there's usually a surgeon's scalpel at hand and oxygen masks and hospital beds with straps and creepy things like that. Especially if it's a torture scene So obviously I'm not a massive fan of that. I don't really like the feeling of being freaked out by gory stuff. And hate seeing people hurt each other, even on film. It's just not my thing at all. I find it opens up a lot of unpleasant memories for me. Having tests you haven't had done before, doctors with a tray of needles, is pretty frightening and it's the same feeling that I get when I watch some mad guy brandishing needles and scalpels at some helpless 'patient'. So no, I'm not going to watch any gruesome films, thank you. (Saw is on our watch list for my Film Studies module this year! Help me!!!!!)  

Here's a nice one to finish on, it takes an awful lot to get me bored because of the endless hours I've spent in hospital, lying around for days on end and not doing much. I think this is partly my nature also, as my mum is an artist so she is exceptionally patient with her drawings. We always used to sit together and paint or draw, or do puzzles and things when I was recovering from surgery or illness. I always have a head full of things to do and relish the long periods of calm in which I can begin to make a start on everything I want to do. I'm a highly creative person too, which also helps. If I'm bored I'll look through my list of unfinished pieces of writing, my sewing box, my bookshelf, my craft drawer, my library of DVDs and I'll always find something interesting to do. Most creative people have had some kind of trauma in their lives, which kick starts their creativity. Certainly a lot of the successful ones have. Often it's an illness in their childhoods, or bouts of depression. Depression is a very popular one for writers, J. K. Rowling, F. Scott Fitzgerald, Tennessee Williams and Emily Dickinson all suffered with depression. While studying dance, I came across a lot of dancers who had had some kind of illness in their childhood, often this was the reason they began dancing in the first place. It's good that some good comes out of a bad thing, and it's obvious to me that having heart disease has made me who I am and I've never wished for a moment that was any different, even though of course I'd love to get rid of this illness, it's still a part of me. 

Tuesday, 8 October 2013


My apologies for the lack of posts recently. It's been pretty busy in my life recently. I moved into university a little over two weeks ago and then had to rush off to Papworth for an appointment with the transplant team. Not much to say about that. I had an exercise text on a bike but my blood pressure dropped quite low so they stopped the test before I really started flagging and they said they weren't going to attempt it again. So I'm pretty happy with that because last time I had a proper exercise test I ended up with chest pain for three months and I was worried that was going to happen again. I got my tissue typing results while I was there and they came back at 50%, which means I'm a match for 50% of the population as far as tissue type goes. I'm not sure if they've already factored in your blood type but my blood matches 50% of the population as well so I'm pretty happy with that. Obviously 100% would be preferable but as I've had blood transfusions and lots of surgeries, all of which boost your antibody count, I was fearing a much lower number. There are people who come back only being a match for 3%, which obviously puts your wait on the transplant list up.

While I was in Cambridge I stayed at another premier inn but this time we booked a disabled accessible room. That usually just means it's on the ground floor but in our premier inn they had completely changed the room to make it as accessible as possible. The room was bigger for a start so you could easily get around the room in a wheelchair if you were wheelchair bound and the bathroom had a sliding door, which is much easier to open in a wheelchair than conventional doors and there were hand rails all over the bathroom. The bed was low down so you could literally fall out of your wheelchair onto the bed. Even the hooks on the walls, the light switches and the peep hole was at wheelchair height. I've never come across anywhere so wheelchair friendly. The lengths they had gone to, to make sure it was accessible was really appreciated and I highly recommend staying there if you find, like me, that hotels are difficult to get around in a wheelchair.

So I've been at uni for the last two weeks now. Lectures started last week and the work load is pilling up fast. I'm getting quite exhausted from just getting up early and going to my lectures so I'm finding it hard to fit in all my work too. Luckily most of it is just reading and as I'm doing the writing for young people module, they're not very complicated books. But I really struggle to get creative writing done when I'm so tired and stressed out about work. One of my tutors is being a bit weird about giving us all these deadlines for our stories. We only had five days to write our first story. I really hate being forced into creativity. They told us for the whole of last year not to force it, just to do something that makes you feel creative and if something comes to you don't write it down straight away, let it stew. Writing a story isn't really something you can just sit down and wade through, like an essay or a report. I'm not sure if those lectures are going to turn out all that inspiring but hopefully I'm wrong. I'm really enjoying writing for young people anyway. If I remember rightly, I found it difficult at the beginning of last year too so hopefully once I get into the swing of things it'll be fine and I'll have a bit more energy. 

I'm currently getting some chest pain again, but it's a lot different from last time. It feels like a pulled muscle but it's a constant pain and it doesn't react to movement at all and it doesn't get stiff and sore in the mornings like pulled muscles do so I'm not sure what it is. I layed off the morphine for the first few days so I could feel what the pain is like so I could explain it to my doctors but now I've phoned my nurse I feel okay to take it. She recommended I did take it and to try oxygen too. There's no point being in pain and it might give the doctors more of an idea about what it is by the way it responds to morphine or oxygen. Hopefully it'll just pass in the next few days and won't end up being something big. 

That's about all really. I've got a few unfinished blog posts on the go so I should be able to post a few things even if I'm really busy at uni. Even so, it might be a bit quiet for a while, just while I get into time swing of things. 

Thanks for reading! 

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