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. 

Updates

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! 

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. 

http://wowpetition.com/

Strictly!!

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!

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! 

Summer Trip

I always get a bit nervous planning a trip, paying for a hotel and tickets to something. I always seem to get ill at the wrong moment. When I was 7 I was all ready to go to Disney World in Florida with a charity that takes sick children for a once in a lifetime holiday, when I right on cue I got sick and couldn't go. Luckily they did the trip every year so I got to go the next year. I remember the woman who ran it being worried about going through trying to get me insured to fly again. As soon as an airline company hears you've got heart and lung disease they don't want to know! I think if they weren't a charity that wouldn't have managed it. If that had been a family holiday it would have been a disaster, no money back and no holiday! And at Christmas I was planning a trip to London for a bit of site seeing and going to see War Horse, but I came down with glandular fever and couldn't go, which I was really sad about. But I'm hopeful that I won't fall ill for this one. I'm not allowed.

So I'm planning a trip to Oxford at the end of August (not long now!) for five days with my boyfriend. I'm really excited to be going somewhere. I can't really go abroad because if I got ill, the last place I want to be is stuck in a foreign hospital with no one knowing my history, and as I've mentioned flying is difficult because of difficulty with insurance and problems with taking oxygen on planes. But luckily I don't really have a strong desire to travel, there are so many beautiful places in Britain to visit. Oxford being one them. We're going to spend four days in Oxford and then on the second day we're going to go to The Making of Harry Potter Studio Tour in Leavesdon, which is about an hours drive from Oxford. This will actually be my second time at the tour but it was so amazing the first time I went that I'm even more excited this time around and my boyfriend hasn't been so we just had to go. If you're a Harry Potter fan you definitely need to go, even if you wouldn't really consider yourself a 'fan' but want a good day out, it's perfect for that too. You won't believe the stuff they have there. They must have been planning this for a while because they've kept pretty much every prop and set they built for all of the films, and it's quite surprising the things they did actually build. One of the tour guides said they actually have more in storage that they're going to bring out later on to mix the tour up a bit. And if you're registered disabled, phone the ticket booking line and you'll get a carer in for free! They don't have to be your official carer but you do have to bring proof of Disability Living Allowance when you go. There's good accessibility there, it's all flat and there's ramps between some of the rooms but there aren't stairs anywhere so you're still in the midst of the crowd. There aren't many places to sit down though so if you have a wheelchair I'd advise bringing that. It's organised quite well so it didn't seem insanely busy, and it isn't difficult to get the wheelchair around. No less difficult that your average shop or museum anyway. 

We're going to decide what to do around Oxford when we know what's happening with the weather as some things like hiring a boat to go down the river or visiting the botanical gardens we can't do if it's raining. Hopefully my energy will last the whole five days. After feeling pretty good for a while I'm starting to get tired a lot again, but I still feel like I can push through it quite a lot. I find that there's tiredness and Tiredness, there's feeling a bit flat and lazy and there's not being able to do anything, a kind of fatigue that just takes over. When I feel like that, I don't get bored lying around because I know that's what my body needs. Thankfully I haven't felt like that for a while now, and I don't get it very often but I do have my days. But I think Oxford is going to be good. I think there's a certain amount of mind over matter when there's something you really want to do. 

So wish me luck! I have another appointment with the palliative care team this week so I'll probably do a post about that if anything interesting happens. Bye for now! 

Weight Management

Sorry for the lack of posts lately, I've been enjoying my summer! But I've got a post on weight management if you find, like me, that putting on weight is a struggle. I know, feel free to hate the fact I'm skinny! But it's a problem. And being underweight is as dangerous, perhaps more so, than being overweight. 

I've been trying to gain weight for a while now and I got given the most useless pamphlet by the people at Papworth advising me how to gain weight, back in March. This is what they told me to do. 'Eat lots of processed food.' I guess I should just throw nutrition out of the window then, I'm sure saturated fats are the way to keep my heart healthy. 'Don't eat 5 portions of fruit and veg, limit to 2 portions because they don't contain enough fat or calories.' I never thought I'd see the day the NHS was telling me to not eat fruit and vegetables. 'Eat sugary snacks, and full sugar fizzy drinks.' And watch your teeth fall out as you go. 

Given that this leaflet was the most useless thing I've ever read, I decided to give some help to those in my position. As I said I'm trying to gain weight, but I'll be giving some advice to losing weight too because I know that's a problem other people too, especially when you're on the transplant list as all the risk factors go up once you go above or below a certain BMI. I don't pretend to be an expert in nutrition, quite the contrary, but I've picked up a lot of tips from tv programmes, reading and from my own experience so I hope it'll be useful. I think advice to people trying to gain weight is difficult to find and obviously the NHS aren't giving the most useful advice on this subject.

Firstly let me just say, crash diets don't work. The best way to manage your weight is to make small but permanent changes to your diet and lifestyle. In any case crash diets are not healthy. So here are my tips for managing your weight. 

Don't count calories of grams of fat - Your body doesn't absorb some fats, for example nuts have a high fat snd calorie content but the amount of fat and calories your stomach breaks down is minimal. What you should be doing to checking for saturated fat which your stomach breaks down easily and contributes to high cholesterol. This is what makes processed food so bad. When fatty food is broken down for you then all of it is absorbed by your body. For example when nuts are puréed into peanut butter, your body will probably absorb the number of calories written on the tin. So if your trying to gain weight eating ground nuts or peanut butter will let you put more weight on than eating whole nuts. For those trying to loose it, nuts are a very good snack because they fill you up and don't contain any of the nasty stuff in crisps or biscuits. Choose an unsalted almond, as they are particularly hard for your stomach to break down. Even if you are trying to put on weight, my advice would be to stay away from saturated fat also, because it's not good for you at all and adding bad habits like that to your diet is not a good idea. Keep your takeaways as a treat. 

Making the little changes - for those putting on weight - add butter to your potatoes and vegetables, switch to whole milk and drink a glass every other day, add more meat to your diet, minced meat is good because again it's been broken down so your body will absorb more of the calories. Switch crisps for biscuits, something like a digestive, nothing too sugary to protect those teeth. Eat a larger snack rather than grazing, some cheese and biscuits or a high calorie breakfast bar, or even buying bars designed to be high in calories for climbers or mountaineers. If you're especially worried about your weight and you have a condition that means it's dangerous for you such as heart disease you can get high calorie milkshakes on prescription which is a lot cheaper than buying them yourself and will pack an easy calorie drink. This is especially good if you have a busy lifestyle, but don't use shakes or bars to replace meals, these are simply to replace low calorie or unhealthy snacks. They do fill you up a bit so find a time where it isn't going to interfere with your meals or drink half a milkshake a day and keep the other half in the fridge and build up. Smoothies are good as they are very healthy and contain more calories and less nasties than coke. Choose a banana and mango smoothie or something that isn't too acidic to save your tooth enamel. You might want to consider switching to a pro enamel toothpaste if your going to be eating a lot more fruit than you usually do. This tip goes for those of you trying to lose weight too as smoothies are a good filler and will keep you fuller for longer, but remember to protect your teeth. I actually don't have a tooth enamel so I'm particularly careful about the acidity in my foods. Note that cheese and dairy products will neutralise the acidity in your mouth so cheese and apple is a good nutritious combo for those gaining weight.  

I don't have any particular tips for loosing weight as I don't have any personal experience as I have with trying to gain weight. But how to loose weight is a subject that has been written about extensively. Just eat things that are healthy and add some exercise into your daily routine. Don't skip meals or your body will panic and start storing everything you eat because it will think you are fasting and grazing will keep your metabolism working full out.

I hope this is useful to you in some way, or interesting at least. I found such a lack of advice for people trying to gain weight and I hope that people will find this at least more useful than that terrible NHS advice leaflet!