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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