An up and down week

Once again I've not updated for a week, so this might be quite long :p Sorry.

The Save Jess campaign is coming along fantastically thanks to Sarah, Emily and Holly. There is now a website at www.savejess.org.uk, t-shirts, a huge Twitter campaign, media coverage... My Gifts of Life photoshoot hasn't been rescheduled yet though because Sarah is so busy with the Save Jess campaign at the moment. Holly is planning a sponsored abseil to raise money for Live Life Then Give Life, which you can find out more about here. And you can sponsor Holly and her fellow abseilers here.

I received an email from Emily last week to forward on to all my contacts telling them Jess' story and raising awareness of the need for organ donors. I forwarded it on to all my contacts and have had a few responses. A friend text to say that she was already on the organ donor register and my consultant, Dr G, from Hospital B replied telling me that him and his family were all on the register and he discusses organ donation with all his friends and colleagues. I also recieved a lovely email from a teacher from my secondary school, Mrs W, saying that the email had made her sign up and talk to other people about organ donation. And an old friend from the church I used to attend when I was a lot younger got in touch to tell me how she'd been raising awareness of organ donation at the church. She's been talking to loads of people about it and is going to write an article for the newsletter. I also answered a few questions about how to sign up that she'd been asked. So it's great that awareness is being raised.

Last week I heard from K's mum as K has just had her transplant assessment at hospital B. Unfortunately K won't just need a small bowel transplant, but instead will need a multi organ transplant (small bowel, liver, pancreas and spleen), so her mum was very shocked and upset at this news. I feel so helpless as I can't do anything, but have let K's mum know that I'm always there if she wants to talk. I hope K doesn't have to wait too long for her second transplant so her family can soon get back to a more normal life and K can get home.

About 2 and a half years ago, I met a friend called R on some online message boards for teenagers. She had ME and although I didn't have it at that point, we could relate to each other because extreme fatigue had been one of my symptoms when I had liver failure. Then when I developed ME R was a great support to me and we now are in regular contact via the AYME forums. Unfortunately on top of having ME, R has developed gastro problems, so I've been supporting her as that's an area I know a lot about. R had to be admitted to hospital yesterday for temporary NG feeding to boost her weight, so we've been in contact a lot since then. When I stay in hospital I love receiving post, so I've put a parcel together to cheer R up and posted that off this afternoon.

Last week I received the AYME relaxation CD that I ordered in the post. I tried that in one of my rest sessions, but didn't get on with it very well. Since then I've discovered that listening to music is the best method of resting for me, but I'm still not resting as much as I should. And I've discovered that I can't listen to Mika while resting because his music makes me go a bit hyper :D

I've been listening to The Boy Who Knew Too Much loads this week and have now lost count of how many times I've listened to it! I like it better each time I hear it though. And it's especially good when I can play it at full volume when I'm alone in the house :p I need to change my ringtone on my phone from Taylor Swift's Love Story which I've had for ages to something of Mika's. And Mika's UK tour dates for next February will be announced on Monday, how exciting! I'm hoping to see him on tour twice - once with my mum and once with my friend H who is a fellow Mika fan :D Mika was on Radio 1's Live Lounge yesterday which you can listen to here. I can't stand Lady Gaga or her music, especially Poker Face, but I like Mika's version of it. Let me know what you think. Oh, and Mika's new album charted at number 4 on Sunday, not bad :D

I saw the music video for Alexandra Burke's latest single, Bad Boys, on the music channels yesterday. I couldn't stand her on X Factor last year, but can't help liking Bad Boys, as it's very catchy. Not sure about the video though. I also really like Cheryl Cole's new single, Fight For This Love, even though I didn't the first time I heard it. It's definitely grown on me though. I saw an interesting programme about the making of the video for it on C4 at the weekend.

Again I've watched quite a bit of TV this week, including the X Factor Bootcamp. I didn't like Saturday's episode as there were too many contestants to follow, but Sunday's episode was better when there were fewer contestants. I was disappointed that my favourite from the auditions, the girl from Trinidad and Tobego with the fantastic voice, sank without trace at bootcamp. And I was annoyed that the arrogant Irish twin boys who sang over the poor girl during bootcamp got through to the judges' houses - I really hope they don't go any further. I was happy with most of the other contestants in the final 24 though, but don't have a favourite yet, and am looking forward to the judges' houses next weekend.

I can't remember if I mentioned before that me and mum booked tickets a little while ago to see The Rise and Fall of Little Voice in London next month, starring Diana Vickers from last year's X Factor. I was disappointed to receive an email today informing me that the matinee performance that we'd booked to see has been cancelled :( The email said that we can swap our tickets for another performance though, so we've tried to do that over the phone. I used an offer I got from Diana's Twitter page to get very good tickets for a reduced price, but it looks like to go on a different day we will have to pay full prices and wont get as good seats! Grrr, they cancelled the performance, so it's not out fault! Anyway, the person mum spoke to on the phone is going to ring back, so fingers crossed.

I've watched lots of DVDs this week again, but I really enjoy watching them. I rewatched Sister Act with my mum as she'd not seen it and we both loved that. Then the following day we watched Sister Act 2: Back in the Habit that I'd rented from Tesco. That was not as good as the original, but was still very funny. I also rented and watched a fantastic Japanese anime called Howl's Moving Castle and a very well made, but quite sad film, called The Girl In The Park. And yesterday I watched the only Pixar DVD I'd not seen, Ratatouille. And that didn't disappoint :D

Last night I bought the Mr Bean boxset from HMV for a very reasonable price because I used to love the Mr Bean videos I had when I was much younger. That was dispatched this morning, so should arrive soon :) I also bought 6 DVDs plus a few other bits and pieces for bargain prices at a carboot sale on Sunday. The carboot sale was great as I went with my parents and my nan and we bumped into 3 of my cousins who had a stall there. Sunday was a very busy, but nice day because after the carboot in the morning my nan came back to our house and my friend Claire came round too and they both stayed for tea. I am going to start using a spreadsheet to keep track of my spending for a few months from tomorrow (October 1st), so fingers crossed that helps because I know I spend far too much money, especially on DVDs. I think I might stop going to carboot sales as often too, as I always spend quite a bit of money at them.

Me and mum still haven't got to the cinema to see Julie & Julia yet, but hopefully we will do before it goes from the cinema. I think I'm going to see Toy Story 3D on Friday, but it looks like I'll be going on the bus on my own because no-one else in my family wants to see it. I love Toy Story and am really intrigued to see what it'll be like in 3D. And I've prebooked tickets to go and see Pixar's new film, Up 3D, at the cinema a week on Saturday with my family. So that should be good :D Just got my fingers crossed that our flu jabs go smoothly that morning and we're all feeling well enough to go.

My parents sometimes get The Independent newspaper and last Wednesday there was an interesting article all about Pixar. I've just found it available to read online here. I've read a couple of magazines this week as my monthly subscriptions to Focus (a science and technology magazine) and the Official Nintendo Magazine (about Wii and DS games) both arrived in the post on the same day last week. I find Focus really interesting and the Official Nintendo Magazine really helpful when deciding which games to buy. For example I'd preordered a DS game thinking it looked good, but after reading a negative review of it in the magazine I cancelled my preorder. Another DS game that I'd preordered, Professor Layton and Pandora's Box, arrived in the post on Thursday. That definitely lived up to my expectations and resulted in me having some late nights this week! Another distraction that's led to me having late nights is chatting to people on MSN, especially when they are fellow ME sufferers who also feel nocturnal! Lol :p

I'm still feeling very nocturnal some nights, so think I need to try increasing my Melatonin dose and seeing if that makes a difference. I really hope it does, but am aware that Melatonin doesn't help everyone. I have however fixed the problem of dad waking me up in the mornings with slamming the bathroom door. I've stuck a sign on it saying 'Please do NOT slam' and have positioned it in such a way that it gets in the way of closing/slamming the door. And it seems to have worked :)

I was very pleased to discover that I've put on 0.8kg this week :D My eating still isn't very good though. I'm going to stay on 7 nights of feed until my dietician (who is currently off sick) gets back into work. I hope it wont be too long til she's back as I've not been able to speak to her for over 3 weeks now.

Last week I received an appointment letter to attend an outpatient clinic at Hospital B early in October. It was just a clinic letter though, so I don't know what happened to the ultrasound scan and the psychologist appointment that were going to be arranged on the same day. Unfortunately I've had to cancel the clinic because I just can't get there - my mum's car probably wont be fixed by then, my dad needs his car to commute to work and can't get the day off, and I'm not well enough to do the journey on the trains at the moment. I should soon receive details about my annual stay in November (the one that should have been in July) though.

This week both my nan and a lovely neighbour offered to pay for mum's car to be fixed. Dad has turned down the offers though because we have just enough money to pay for the repairs (but then wont have any money left afterwards) and my parents don't want to owe anyone money. Dad is currently hunting around to find the best price for the repairs, as he's decided that getting mum's current car repaired is going to be better (and cheaper) than buying mum a new car. Hopefully it wont be too long til it's mended and back on the road though.

This week I've noticed more of a link between what activity I do and how I feel afterwards than I ever have before. Last Monday I had a busy day going shopping in the city and attending a hygeinist appointment and then on Tuesday and Wednesday I felt really weird and spaced out. I felt better on Thursday so went to visit my nan on the bus. That didn't go to plan (bus ran out of fuel so what should have been a 15-20min journey to get to my nan in the neighbouring village actually took 1 hour door-to-door), so by the time we got to my nan's I was exhausted and then had no energy on Friday. However I had a very busy weekend - day out with my family at a local safari park on Saturday (blog and photos about that to come) and the carboot sale, seeing my nan and Claire on Sunday - yet felt fine after all that. It's so unpredictable.

Last Tuesday me and my parents got a shock when Alf said to us during tea that he didn't like sixth form and didn't want to do his A Levels! He'd decided instead that he wanted to go to a college nearby and study a 2 year animal management course which is equivalent to 3 A Levels. When he was looking at his options for further education in the summer he'd considered this course, but had then changed his mind and decided to do A Levels instead. Last week though he seemed really motivated to leave sixth form and go to college, so he made loads of phone calls and managed to get it sorted out to start at college yesterday. The college course only started last Thursday, so he hadn't missed much. And despite the college being about 20 miles away and situated in the middle of nowhere, there is a bus that goes round all the villages to provide transport there and back, so Alf can go on the bus. There's just the small matter of him having to get up in time to catch the bus from round the corner at 7.30am, which is very early for Alf! He had his first day at college yesterday and loved it, I don't think I've ever seen him so happy and enthusiastic about anything before. I'm happy that he's happy :D Fingers crossed that he continues to enjoy it and the novelty doesn't wear off.