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. 

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! 

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!

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.