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. 

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!!

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! 

Updates

Well let's just say the morphine patches didn't work out for me. I honestly don't think I've felt that ill in a very long time. I was completely drugged up, but not in a good way, I barely had the patch on 18 hours and I was so dizzy and weak I struggled to stand up. I ended up in A&E because I hadn't eaten or drunk anything for 48hours and anything I had managed to drink I'd thrown up. It really wasn't very nice. It's put me off trying any other kind of slow release morphine. Or anything that takes two days to wear off. I think I'd just rather deal with the pain forever than go through that again.
So I'm just going to deal with the pain for a while and I've got a follow up appointment with palliative care the week before Christmas so I'll discuss any other kinds of pain management then but not surprisingly I'm feeling really put off at the moment.

This past week I've been really busy doing all my work for uni. I had two 2,500 word essays and one 2,500 word portfolio to do for this week. I had a Writing for Young People essay in today, which was a close reading of a couple of children's books and I think I'm going to do pretty well in that. I managed to link in a bit of child psychology so hopefully I'll get some brownie points for good research. The other two things are due in on Wednesday, I've just got a conclusion to do and when I get one of my portfolio pieces back I'll have to do all the corrections before I give it in.

Then on Thursday I'm off to Swansea to see my boyfriend's family, finish up some Christmas shopping and have a nice Christmas present wrapping session as we obviously need to give each other our presents before I go back to my hometown to spend some time with my family. I just can't wait for all my work to be done and submitted so I can relax and enjoy Christmas! I can't really do many Christmassy things at the moment because of all the work I've had to do. So I'm looking forward to the end of this week!
Christmas is my favourite time of year and as I was ill for the last two Christmases, I'm ready for a really good healthy Christmas this year!

Life!

I'm sorry I haven't blogged in a while. My chest pain has been pretty constant and draining during the last few weeks and I haven't been up to doing much. When I have felt like writing I've had to get on with the four assignments I've got to submit in a months time for uni. They boasted for the first couple of weeks that they'd tried their hardest not to have all our assignments due in at once, but they've obviously failed quite miserably at that! I've been working on the 9,500 words of assignment and I've actually made pretty good headway at getting it done. I've finished one assignment, got the first draft done for another and started another, which I'm quite happy with because I don't need any more stress because that always makes chronic pain a lot harder to deal with. 

Today, I decided, to hell with it I'm going somewhere. After deciding not to go out all at for Halloween and firework night because they cold makes my chest exceptionally painful, I decided that the Christmas light switch on in Bath was something I should go to. And I'm so happy I did! My boyfriend and I had a nice lazy walk (I say walk in the loosest possible way as I was in my wheelchair but there's no word for that) around town, had a look in some shops and bought a warm hat to see me through the evening. Then we got into the warm and had coffee and a chat. Then braved the cold again for the main event. The light switch on, which this year starred Mary Berry along with a band and a gospel choir. Simply because we came at Milsom Street (where the event was) we ended up being allowed by security round the side of the stage without too much of a crowd and later the security even asked everyone to get out of the way so we could have a good view from behind the gates. We stood (again I'm using wrong word, I sat) by this really lovely woman who was also in a wheelchair and had the sweetest little 6 month old baby on her lap. We got a bit of press attention too, which I always find a bit odd as they wouldn't have looked twice at us if we weren't in wheelchairs but it's pretty cool still that I might end up with my picture in the local papers. 

The switch on show was really good, lots of Christmas songs to get everyone in the festive mood and then of course the highlight for everyone, Mary Berry! I love The Great British Bake Off and I love Mary Berry because she reminds me so much of my Gran. They were even both born in Bath and around the same age I think. My Gran is a massive fan of hers too. They're just both the sweetest women you can imagine. I think everyone would love to have Mary Berry as their grandmother. The best thing was that when she came down from the stage she walked towards us and started mingling with the crowd. Where we were was the only bit that wasn't fenced in so she was able to come right up to us and she shook my hand and asked me how I was and then my boyfriend asked if we could have a picture together and she said yes!!! I could barely contain how happy I was! My boyfriend managed to get a really good photo of us, which I will treasure for ever. It was just the prefect end to a lovely day. And I'm just so glad I decided to go out today because if I hadn't I wouldn't have had the lovely day I did. As it turned out my chest wasn't so bad in the cold, though you can see in the picture I'm pretty well wrapped up! But it was probably more to do with the excitement of seeing Mary Berry and having a lovely day that took my mind of the pain. It's hurting now as I lie in bed writing but I can have a swig of morphine now that I'm safely in bed and it doesn't matter if I fall asleep.

Before I start talking about what's happening with my chest pain, here is the photo: 

The press were also snapping like mad at this point so I might see this photo in one of the local papers too! 

I'll fill you in on what's happening with my chest, while I'm in the blogging mood. I went to the hospital to see my usual specialists but as usual they don't know anything. They seem pretty sure it's my pulmonary hypertension causing it but what the exact cause is remains a mystery. I always seem to be that person who just doesn't make sense at all! I go against pretty much everything ever written about heart disease and PH. To be honest I'm more concerned about pain relief and my palliative care doctor seems to have been a bit quiet for a while. Until this morning that is, when she suggested using a morphine patch. (As if I don't look enough of an addict as it is with my bag constantly full of syringes and tablets. It sure is going to look weird if I'm wearing what appears to be a nicotine patch and an oxygen cannula and I'm only 20 years old!) The liquid morphine isn't working out very well for me though. I took it at the beginning of the year for long periods and felt fine but this time I'm really feeling the drowsiness side effect, which is very frustrating. But the patch sounds like a good idea as it doesn't have the highs and lows of taking conventional forms of painkillers. Where you're in pain you take some, the pain is subdued and then the pain is back, which makes is the main reason it can become addictive and as pain management isn't as effective as slow release forms. (For anyone who is worried, my doctor told me it's virtually impossible to get addicted to morphine when you are using it for pain, it's when you take it when you have no pain that it effects a different part of the brain and it's then that addiction may be caused.) I don't know when this is going to happen but she said she wants to see me to discus other options so I'm not sure if these patches are going to get to me that fast. That is the most annoying thing about the healthcare system, everything takes a ridiculous amount of time. "Hello, I'm in constant pain here!", "so we'll see you in three weeks, okay?"

So I'm just waiting for things to be sorted at the moment but I'm getting out, which is good for my sanity, and I'm enjoying my uni work too. I'm feeling happy, which is the main thing. Just remember, life is for living, take every chance you have to go out there and let life give you the good stuff. Above all, learn to listen to your body, if it's telling you to rest, do it, if it's undecided, go out and have fun and see what it does to you. You don't know until you try, and maybe your body will give you a break. It did for me! 

Bath Christmas lights at Southgate shopping centre. 

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. 

Greetings!

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

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

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

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

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

Have a lovely day!
Sara