Friday, 13 September 2013

Just a Quick One...

Just a quick post today to try and get you all to sign an online petition! There's been a few scary stories about this new capability for work test sick and disabled people now have to do in order to continue receiving employment and support allowance. Perhaps the most famous of these is the case of Linda who, after two heart and lung transplants, was told that she was fit for work following a twenty minute meeting with the private company ATOS the government have hired to carry out these tests. She was obviously extremely upset and frustrated and wrote to appeal the decision. She died nine days after her appeal was rejected. Plainly this woman was too ill to work. She was practically on her death bed. Naturally the government claims this was an isolated case but the press have sadly unearthed similar stories. 

This petition is mainly opposed to these new capability for work meetings. However, they are also looking for a system reform when it comes to this subject. They want sick and disabled people to be helped into work if possible not forced and threatened with the cutting on their benefits. While understanding that cuts need to be made, I don't think forcing disabled people into work is the answer. 

For more information and to sign the petition please copy and paste the below link into your browser.

Tuesday, 10 September 2013


So if you're in England you'll know that Strictly season has started! (In America you'll know it as Dancing with The Stars). And that means I'm even more obsessed with dancing than I am the rest of the year! As you may know if you've read my earlier posts, I used to be intent on a career in dancing. I've danced since I was four, I did GCSE dance and got a B in A Level dance as well doing ballet to intermediate foundation level at my dance school. I was also part of a contemporary dance group before I went to university to study dance. Even though I only managed two months of the course before I had my lung haemorrhage, I absolutely loved it and even though it didn't work out I still value the experience. 

I'm very glad also that I'm still able to enjoy watching dance. I could just as easily have never wanted to see another dance again. I can't deny however, that all I want to do after I've watched a good strictly show is get back in the dance studio but I usually feel okay once I've done a few pirouettes in the kitchen. I've been watching the US show Dance Moms quite a lot lately, it's a bit of a it's-so-bad-it's-good kind of show, but it just reminds me of dancing with my dance school when I was young. I'm glad Strictly is starting though because it's a thousand times better than Dance Moms which is edited and manufactured so that it's full of drama and I can't deny that it is a rubbish show. Anything to do with dance I love. I spend a lot of my time on YouTube looking at the Royal Ballet's channel where they put up some professional rehearsals from time to time and watching all sorts of weird and wonderful dances. I particularly love 'The Most Incredible Thing' which is a full length dance work with music from the pet shop boys. I'm really glad I can still enjoy dance without having to bust a lung getting up and dancing myself

I'm in denial that I can't dance anymore, though. I have a big box of leotards and ballet shoes, which I refuse to get rid of because some part of me is convinced that I'll dance again. I keep telling myself, well maybe I can teach one day, maybe I'll get better enough to do a bit of ballet. I was all set to get back to dancing as soon as soon as I recovered from my haemorrhage, even though I couldn't even get up the stairs in my house, but my doctors advised against it. But I'd love to start even a bit of ballet where I could focus on core strength and barre work rather than all the jumping around but while I'm at uni I haven't really got the energy and all the dance schools break for the summer. I will dance again one day though. I'm convinced of it. 

But for now, all hail Strictly Come Dancing! And curse the producers who decided there's going to be a three week break before the next show!

Monday, 2 September 2013

I'm Back!

I have returned from my trip to Oxford and I'm certainly pretty tired out! But I had a really good time! I'm pretty pleased with how my health kept up as well. I wasn't as tired out as I thought I'd be throughout the trip but when I got home I was absolutely exhausted! I could barely stay away long enough to have a bath and get into bed but I felt much better after a long sleep. Considering I wasn't sleeping brilliantly on the trip as the hotel was boiling, I'm very impressed with how I kept going, even if I'm probably going to be feeling rather tired out this week. It was definitely worth it.

The trip mainly consisted of trying out all the restaurants in Oxford and I absolutely stuffed myself full of food! If I didn't put on any weight, I never will. We ate out for lunch and diner nearly every day. We found this really lovely pub called 'The Eagle and Child' just round the corner from the Ashmolean Museum, which is apparently where J. R. R. Tolkien wrote Lord of The Rings, and they had some of his drawings on the walls. Lewis Carroll too is said to have eaten and wrote there. It was very quintessentially British, which is always nice. We had a really good curry on the last night, which was just up the road from the hotel. I'm fussy with curries because I like a korma but I often find them too sweet and not spicy enough but I like really creamy curries but this time I had a spicy starter so I was happy with my very rich, creamy curry. I don't feel like I've been properly hungry for ages so I'm looking forward to have a few salads, eating a bit healthier and going back to my grazing. 

The highlight of the trip was actually something we didn't plan at all. We were in the Ashmolean cafe, wondering what to do in the evening and thinking we couldn't possibly go out to dinner again and thought we'd check out the local theatres. The only thing on at the main theatre was the Rocky Horror Show and even though I love musicals I don't think it would be my cup of tea so we looked at the Oxford Playhouse and saw they had a Agatha Christie play on called 'Go Back for Murder'. Now me and my boyfriend love a good crime drama so we phoned up and got two tickets for £30 right at the front for that night. The play was really good too, probably the best play I've seen for a while. 

The Harry Potter tour was great too, it was really good to go again because there was a lot of things I'd forgotten and things I didn't notice before. Though it wasn't quite as magical as the first time it was still really good. I won't spoil anything for you in case you're planning on going because the magic is in the surprise! I splurged a bit at the gift shop, but you never know if you'll be able to go again and you can't buy a lot of the stuff anywhere else other than the Harry Potter resort in America. So I bought some charity books J. K. Rowling did for comic relief back in 2001. I don't know why I never bought them but I'd been meaning to get them ever since I got another charity book, 'The Tales of Beadle the Bard' for Christmas, which are wizard fairytales and are akin to our Grimm Tales. The two books I got from the tour are based on Hogwarts text books, which feature in the original Harry Potter books. 

'Fantastic Beasts and Where to Find Them' describes all the creatures in the world of Harry Potter including some annotations from Harry and Ron. 'Quidditch Through The Ages', which obviously from the title gives a bit more information about the game than the Harry Potter books did. This too is graffitied and has a library stamp in the front with a list of students who have taken out the book, which is a nice touch. They were £5 each. I probably could have got them cheaper online but as they're charity books I wanted to buy them from a proper shop so I know where the money is going. And brand new books are much nicer when they haven't been battered in the post. 

I also got a little notebook, because I love notebooks. I have loads of them lying around so one more can't hurt, right? The crest on the front is metal, the pleather is nice quality and the paper inside is really glossy so it's nice it's well made. 

I also got a soft toy of Scabbers, which is Ron's rat and ends up being a bit more than he seems (dum dum dah!). I just thought he was cute and he's even got a toe missing and little patches of fur pulled out like he's described in the books. And I got a deathly hallows keying, which you can see in the picture too. I also got some pins to go on the little bag I keep my iloprost in because I put all my heart charity pins on there so I thought I'd start collecting pins. Because I'm weird like that.

There were lots of nice little book shops we found in Oxford we found as we were walking around trying in vane to make ourselves hungry before lunch. I bought a good hospital boredom buster book from Waterstones on the first day, which is called 'Wreck My Journal' and it's like an adult activity book basically. On every page there's a different way to wreck the book. For example there some normal ones that you'll probably remember doing to your old school books like punching through the page with a pencil, colouring in a whole page and some really inventive ones like eating colourful candy and licking the page and using strands of your hair to make a pattern or picture. It seems like a really funny thing to do in hospital because people will probably think I'm really crazy just sat in bed licking my book. I haven't put in a picture because I think I'll do a before and after shot when I've finished it. I also bought a book of Samuel Taylor Couleridge's poetry, which I like because it's really dark; Couleridge suffered from depression. And I also got Virginia Woolf's 'The Waves' because beginning sounds like a story I'm writing at the moment so I though it might inspire me to write a bit more of it. I bought both of those from a £2 bookshop. I think they must be the end of printing lines because they're all brand new and unread. Now I need to finish Mrs Dalloway, which I've been reading for ages. Miss Woolf is quite heavy going! 

Think that's about it really. We wanted to go round a college but they were all closed and we didn't end up going down the river because my skin is reacting really badly to the sun at the moment. I've always got one or two attacks of heat rash but this year has been ridiculous. I'm going to see if my medication might have something to do with it as I got sun burnt the other day whilst sitting in the shade. Iloprost is the only thing new but it's not on the list of side effects. However there's probably not a great deal of data on the subject because very few people take it so that doesn't really rule it out as the cause. Maybe if it's due to photosensitivity there might be a different meditation they can give me rather than the hay fever tablets I've tried, which haven't done much for it. But for now I'm just trying not to scratch my sunburnt rash! 

Nothing much else to update you on. I'm going to see the Papworth transplant team in just under three weeks for the usual tests and things. Nothing that interesting I don't think. I haven't got any further in my decision making as to whether or not to have a transplant in the future. I'm just going to keep checking in with the transplant team and I'm not ruling anything out yet and hopefully it'll be a nice while before I have to worry about making that decision. 

I've got a few half written posts knocking about so no doubt they'll be up in the near future. Thanks for reading and have a nice day! 

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