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.

Mika

As you all probably know by now, I'm a bit obsessed with Mika, hehe ;) I know some of my blog readers like his music too, so I thought I'd give you a few links :)

His official website is Mikasounds. And the latest news update can be found here and includes links to all of the TV interviews and perfomances Mika has done recently to promote his new album.

I'm now off to listen to The Boy Who Knew Too Much for the 8th time :D

Warning - long update!

I don't appear to have learnt from my past mistakes and yet again I've not updated my blog for a week, so this is going to be a long update! Whoops, I hope it's still ok for everyone to read.

On Wednesday evening I heard from Sarah, from the Gifts Of Life project. She couldn't make it on Thursday. So I'm hoping my photoshoot will be rescheduled before the project photoshoots finish at the end of October. I was disappointed as my photoshoot had already been rescheduled once, but I understood Sarah's reasons.

On Thursday I received a huge pile of post:

Thanks mum for the photo!

I received the Christmas cards I'd ordered from AYME (trying to get organised for Christmas before December, but don't worry I'm not writing the cards just yet!), 6 of the DVDs I'd bought with my vouchers on Tuesday, a postcard from my brother and his girlfriend from their holiday in Mallorca and 2 ESA letters. My ESA is now sorted after getting a doctor's letter from my GP and posting that off and making another phone call because some of the details I'd given for my claim over the phone had been recorded incorrectly! Then on Friday the final DVD of all of those that I'd had ordered arrived. And the funniest bit of post I got this week was a letter from Hospital G (the children's hospital I was under when I was on TPN before my transplant) asking me to attend an outpatient appointment there! I've not been under them for about 3 years now, so I'm not sure why we've had 2 or 3 letters like this recently, lol. I wonder if my name is being called out in clinics! Mum is going to phone up to try to sort it this week though.

This week I've started using MSN again as I got so fed up with Facebook chat not working. And MSN is working much better :D I've also been surfing the Internet a lot this week and chatting on two ME forums (AYME and Foggy Friends). I've made some fantastic friends on the forums and they're really good for getting advice and support too. There was an awful episode one night this week though when a member on one of the forums who I knew quite well pretended to have died so he could come back with a new identity. It really messed my head up and confused and upset lots of forum members. But he's been banned from the boards now and I just hope he get the help he needs. Most people on these forums are lovely though :) And one of my new friends also has a Wii and Mario Kart Wii, so we've been racing against each other online this week, which has been great fun :D

I've watched loads of DVD this week :D
~ Spy Kids 3 - was rubbish and when it was being made I think they forgot to give it a plot! Don't watch it, you'll regret wasting your time on it. I thought that was a shame because I love Spy Kids and Spy Kids 2 is quite good.
~ You, Me and Dupree - was very funny and much better than I expected.
~ Mary Poppins - was much better than I remembered and I loved all the songs. Didn't realise it was quite so long though (2hrs 15mins). I'm looking to buy a copy now becuase that one was rented.
~ Edward Scissorhands - was fantastic! I love Tim Burton :D I'd highly recommend it and if you've not got it there's no excuse because HMV, Amazon and Play.com are currently all selling it for just £3!
~Forces of Nature - was less predictable than I expected and very funny. I think Sandra Bullock is a great actress :)
~ Mika Live In Cartoon Motion and Mika Live Parc Des Princes, Paris - were fantastic of course! ;)

And I'm trying to get into Friends after Lizzy (who is a big fan) lent me the whole first series on DVD. I watched the first episode a while ago and watched the second episode this week. I don't really get the humour. I understand some of it, but some of it I don't find funny at all. I'm going to try to watch few more episodes though and see what I think.

I've also watched quite a lot of TV this week, so I wont bore you with details of everything I watched! I don't like the new X Factor auditions format and much preferred it last year without an audience. So I'm glad the auditions are over for this series and hopefully it'll improve from now. I saw a good interview with Pixie Lott on ITV 2's The Hot Desk and really want her album as I like what I've heard of her music. However, I'm currently trying to spend less money so am trying to wait til it comes down in price. I saw a bit of Bestival coverage on channel 4, but the style of the highlights programme (lots of rubbish and not that much music) really annoyed me. It was good to watch Little Boots (I'm so excited about seeing her next month!), Lily Allen and Mika (of course!) performing! :) And Emily did a fantastic job on GMTV yesterday morning talking about Jess, her fight for life and the need for more organ donors. I've put the link to the GMTV as a comment on the Jess blog post.

I've not done much reading this week, but I've enjoyed playing on my DSi a bit. I've preodered a new DS game which is a sequel to my favourite DS game, so I'm excited about getting that on Thursday or Friday this week :D And I've been listening to lots of music this week. I was looking through my iPod for something different to listen to one night before bed and ended up listening to S Club 7. That brought back some good memories, as I saw them in concert 10 years ago. Wow, that is a long time ago! And one evening I put my iPod onto random shuffle and that threw up some interesting tracks including some more memories (Spice Girls :D)

And yesterday Mika's new album, The Boy Who Knew Too Much, was released :D I'd only been waiting for it for 2 years, lol :p So I preordered it from HMV last time I was in the city and then went in yesterday to pick it up. While I was in HMV I spotted a huge pile of reduced copies of Life In Cartoon Motion (Mika's first album) and there must have been about 100! I couldn't go home immediately because I had an orthodontist appointment yesterday afternoon, so I borrowed my mum's old discman (I sold mine at our last carboot) and used that to listen to it while I was out yesterday. I've now listened to the whole album through 7 times and it doesn't disappoint. In fact it gets better with every listen. I'd highly recommend. There are only 2 out of 13 tracks I don't love, but I think they'll probably grow on me. The other 11 tracks are fantastic! :D And I bought the deluxe edition, which includes a second CD, Mika Live At Sadler's Wells, which is the concert I went to in June. So that's great, as I can listen to it and remember that I was there :D

I heard on Friday that Mika was doing a free, secret concert in London last night to celebrate the release of his new album. I was originally going to try to go, but then I found out that the 'secret concert' wasn't actually that secret having been advertised on Mika's website, his Facebook fan page, his Twitter and in the Sun newspaper!! So I knew that it was unlikely I'd get tickets, so I'm waiting for his tour in the new year. Hopefully I'll go to see that twice if I can get tickets :D Mika was on the Paul O'Grady show yesterday talking about his new album and I also found a very interesting article about him on the BBC news website, which you can read here.

I heard the Sugababes news yesterday and am susprised that they're changing their line-up yet again. And I thought Amelle would leave after the arguments last week, not Keisha. Now there are no original members left! I saw them in concert last year and used to be quite a big fan, but I think their current song, Get Sexy, is awful. It'll be interesting to see where their music goes with the new line up.

I'm still struggling with resting. Audio books don't keep my attention (even Harry Potter audio books!), so when I listen to them my mind wanders off and then I miss bits of the narration, which is frustrating. I've tried just doing nothing when I rest, but then I fall asleep! Another suggestion my occupational therapist made was to listen to but not watch the TV, but I know if I have the TV on I have to watch it. So I asked for suggestions on one of the ME forums I use and have ordered a relaxation CD to try. At the moment though I keep putting off resting as I can always think of better things to do. But I know that's not a good idea. So hopefully the relaxation CD wont take long to arrive and hopefully I'll find that useful.

Some nights I'm still feeling quite nocturnal despite taking Melatonin. No matter what time I get to sleep I always get up at 9.30am every morning. I think that's good because it stops me getting even more nocturnal, but it does mean if I have a rough night (like I did on Sunday when I kept waking up throughout the night), I can be very tired the next day. I'm wondering if actually I don't need as much sleep as I think I need, which could explain why I don't get to sleep til late, so am going to try getting up a bit earlier and seeing if that then helps me get to sleep a bit earlier. And if that doesn't work then I can double my Melatonin dose to see if that makes a difference. So I'm feeling optimistic that my nocturnalism will be improved :D

I weighed myself this morning and had put on 0.3kg. So I'm now 46.6kg. Last week I went back onto 7 nights of feed per week because I didn't gain any weight the previous week (I was stuck at 46.3kg). So I'm glad I'm now gaining weight again, but I'm frustrated that it's so slow. My dietician at hospital B, S, thinks my ideal weight is 50kg, but would like to me to get 52kg before we stop the overnight feeds because that way I'll have room to lose a little bit of weight. But I think my ideal weight is between 48 and 48.5kg, so 2kg less than what S thinks it is. I think this because when I came off my overnight feeds in February to go to Japan, my weight was 50kg. It dropped to 48.1 kg within a fornight and then stayed between 48.0 and 48.5kg for 6 months without any overnight feeds. It only dropped from that when I got a stomach bug at the start of August. And now I'm back on overnight feeds my weight stuck at 48.3kg again. So I think it might be tricky to get my weight up to 52kg. I need to speak to S, but she's off sick at the moment. Will speak to her when she's back though and see what she thinks.

On Sunday my appetite was great, so I ate a big lunch for me - 2 croissants, 3 shortbread biscuits and a glass of milk. Then that afternoon for the first time in around a month, I had awful tummy ache :( I'd eaten croissants and shortbread recently, so I think the tummy ache must have been related to the volume I ate, rather than what I ate. So that's put me off eating a bit! But I'm still eating lots of croissants :D

For the last week or so my hayfever seems to have been worse than usual, which puzzled me because I can't imagine that there is much pollen around at the moment. But then I worked it out. For my birthday my dad bought me some flowers and also bought my mum some too. So this week mum's were in a vase in the kitchen and mine were in a vase in the living room. I worked out that they were causing my hayfever last night when I was downstairs for longer than usual and my throat started to feel a bit swollen. Mum moved them out of the house and now I'm feeling much better :)

The inside of my mouth is now completely healed :D My lip caught on my braces while I was asleep one night this week and that was a bit sore, but healed quickly. I've been feeling quite good in myself again this week, but had an awful afternoon yesterday. I'd been fine in the city in the morning but then just felt completely exhausted from lunchtime. Think it was probably partly due to sleeping badly the previous night and maybe also because I'd had a busy morning. I felt awful waiting for my hygeinist appointment yesterday afternoon, but the appointment itself went ok. And I felt better once I got home.

Yesterday afternoon when me and mum were shopping in the city, mum dragged me off to a wool shop - boring! So mum browsed round for wool and I just sat down because at this point I was feeling exhausted. Then Liz Barker came into the shop. I don't know if any of you will have watched Blue Peter between 2000 and 2006, but she was one of the Blue Peter presenters I grew up watching and I used to think she was great. I was feeling rubbish and a bit shy at this point, but my mum immediately got chatting to her (think mum was more excited than me!) and involved me too. Liz was lovely :D And mum had her camera with her, so took 2 lovely photos. I've posted both photos because I can't decide which is the best. The little girl on the photos is Liz's daughter, Poppy.

Lots of things have happened in the transplant community this week. On Thursday a little girl, B, from hospital B died. She recieved a small bowel transplant just before Christmas, but had had a really rough time since then. So that news shocked everyone. Then on Fri I heard an update on K, who I'm sure I've mentioned previously. K is 4 years old, has been in and out of hospital recently and she now needs a 2nd transplant. She's had an awful time over the last few weeks and has been in hospital and on Morphine for her pain :( She's at hospital B for her transplant assessment at the moment, so I really hope she doesn't have to wait long for her call. I heard from little E's mum this week too. E is feeling much better in himself, but is still in hospital and still requires a second transplant. And E's little sister B is doing really well and I've seen some photos of her :D And then there's been the news of Jess which I blogged about earlier in the week. Holly is planning a sponsored abseil in November to raise money and awareness for Live Life Then Give Life. I wanted to participate as I'd love to abseil, but I'm not well enough :( I'll definitely be sponsoring the participants though and as soon as I find out how to do that, I'll let you know :)

Earlier this week I wrote and sent a letter to my new penpal. Mawite is 16 years old and lives in Burma. She is the neice of my friend Lizzy's husband. So that was exciting and I'm looking forward to hearing back from her :)

On Friday my friend Claire came round and we had a lovely time chatting, playing Ligretto (which I won with 10 games to Claire's 2!) and racing on Mario Kart Wii (which I also won ;)) :D

My mum's car had its MOT last week. We weren't anticipating any problems so it was a bit of a shock to us all when we were told that it couldn't be driven on the road in its current condition! And it'll cost about £500 to repair it so it'll pass an MOT, which we can't afford. Currently our family just have one working car, but dad doesn't think that's a practical long-term solution. So we're going to see if dad's car passes it's MOT next month and then decide whether to get mum a new car or whether to repair her current car (both of which will probably involve borrowing some money). We're finding it quite tricky with just one car at the moment as dad uses the car to commute to work every morning, so me and mum then don't have use of a car during the day. The public transport round here is rubbish, but we might have to get used to using it for a while if we want to go out. Luckily Alf's bus pass has no arrived, so that's saving my parents a bit of money on his bus fairs.

Jess

Today I'm thinking of Jessica Wales. Jess is 20 and waiting for a double lung transplant. I've never met her, but have heard a lot about her from my friends in the transplant community. Jess has been waiting more than 4 years for a transplant and during that time she has received 7 false alarms where the transplant couldn't go ahead for one reason or another. Jess has a lung capacity of just 11% (she can only breathe in the amount of air that is in a coke can) and is currently in hospital fighting for every breath. Without a transplant Jess will die.

If you saw Holly's Battlefront documentary earlier this year you may remember seeing her with Jessica Wales. This was Jess (with Emily) 2 weeks ago fundraising for Live Life Then Give Life:


And this is Jess today fighting for her life:

Luckily my transplant came in time, but every day 3 people die in the UK because their time runs out before they receive a transplant. Please don't let Jess become another statistic - she's only 20 and has her whole life ahead of her. Please click here to join the organ donor register and talk about organ donation with your family and friends. You can make a difference. Thank you.

P.S. I've just found out that Emily will be on GMTV at approximately 8.10am tomorrow talking about Jess, her fight for life and the need for more organ donors. So please tune in.

Sleep, braces, benefits and DVDs

I've had a few disturbed nights recently. Sunday night I was woken by my braces cutting my mouth and my dad yelling as he fell out of bed (lol!) and then Monday morning by Alf making a lot of noise getting ready for school. Then on Tuesday morning I was woken earlier than I would have liked because the hedge at the back of our back garden was being cut from the garden behind and the hedge trimmer was very noisy. And this morning my dad was slamming doors! Grrrr. The melatonin hasn't really made me feel less nocturnal and I can still read into the night because I don't feel tired, but once I make myself get into bed it isn't taking me long to fall asleep. So I'm going to keep using it and see what happens.

On Monday I phoned up the orthodontist about my sore mouth and asked for an emergency appointment. I was very surprised that they fitted me in that afternoon. My normal grumpy dentist wasn't working on Monday, so I saw a different orthodontist instead. And she was lovely, why can't I have a nice orthodontist normally?! She was very helpful and quickly worked out what the problem was. I knew the inside of my mouth was being cut, but I couldn't work out what by because I was covering all the brackets up with orthodontic wax. The orthodontist I saw noticed that the cuts in my cheek were actually wire shaped, so when I was sleeping (on my side), the wire that went across the gaps where my teeth used to be (before the extractions) was pressing into and cutting my cheek. So she took the wire out and put some protective casing (like a plastic sleeve) over the wire in those places and then replaced the wire. And my mouth seems to be slowly healing. She also tried an idea to stop the wire from coming loose when I eat, but it hasn't really worked. Never mind. I'm hoping that now my mouth is feeling a bit better my appetite might start to increase, as the only thing I can fancy eating at the moment is croissants. When I weighed myself yesterday my weight was exactly the same as last week and that was with 6 nights of feed. So it looks like I need to eat more to put on weight. I'm waiting to hear from my dietician, as I emailed her my weight yesterday.

I've been feeling quite good for the last week or two with regards to my tiredness and energy. I don't have loads of energy, but I seem to have more than usual and seem to be less tired too. I'm also feeling unusually cheerful and optimistic :D My rests aren't going very well though as I'm still finding resting boring (despite now having Harry Potter audio books to listen to), so am not resting as much as I should be. It's difficult because I don't feel like I need to rest at the moment because I don't feel too bad, but know I ought to to help myself in the future, if not today.

Alf is still happy at sixth form, though isn't impressed with the amount of homework he's getting already and he's not even started coursework yet! He's enquired about changing to chemistry, but one set of chemistry lessons is at the same time as his English Lit lessons and he knows that he doesn't want to give up English Lit. So he's going to look into what the other set of chemistry lessons clash with. A few days ago we heard that his application for a bus pass has been successful, so when that comes through my parents will just pay a discounted rate for him to use the bus to and from school, but it'll still be quite a bit of money. But it wont be as much as it's costing my parents for him to use the bus at the moment. Because he's not a child any more (he's 16), he has to pay adult prices. A return ticket for a journey that is about 7 miles cost £4.70! I think that's outrageous! So currently it's costing my parents almost £5 a day to get him to and from school.

I've not mentioned E for a little while. E will definitely need a second transplant. However, his parents are staying very positive about his future. And very excitingly, E's little sister, B, was born on Monday. Both mum and baby are doing well. So I made a new baby card for them and got it in the post on Tuesday. I'm looking forward to seeing some photos :)

On Monday I phoned up Job Centre Plus with the aim of getting an appointment at my local branch to find out what benefits I'm entitled to. But the person I spoke to on the phone said it could all be done over the phone. I'm not sure if I've mentioned before that I hate using the phone. I'm ok speaking to friends or family on the phone (but would still prefer to communicate via text or email instead where possible), but really struggle with speaking to strangers or people I don't know well. It'd taken me a lot of courage to prepare to phone up Job Centre Plus to arrange an appointent, so I was a bit worried about the idea of doing more over the phone. But I did and I'm so proud of myself :D The phone call took about 30mins and I found out that I was eligible for ESA and so put in a claim for that. I'm waiting to receive a letter through the post including all the details I gave on the phone which I'll have to check through to make sure everything is correct. And that letter will also provide details of a letter I need to get from my GP. I'm also going to look at getting my DLA reviewed as I feel that things have changed since that was last reviewed just after my transplant. That'll be a complicated process though with lots of forms to fill in.

Last night I finished an interesting novel called 'While My Sister Sleeps' by Barbara Delinsky. It was quite a sad book but it was well written and similar to Jodi Picoult's style. It was also about organ donation and I was very pleased to read a mention of intestinal transplants at one point! My concentration isn't very good at the moment, so I struggle to read, but I'm pleased that I managed to finish a novel, as I've not done that for a few weeks.

My Vicar of Dibley ultimate collection DVD set arrived this morning, that was a birthday present from my parents. I'm looking forward to watching some of it as I love watching episodes when they're on TV. And my HMV DVDs (Sister Act, Edward Scissorhands and The Corpse Bride) arrived in the post on Monday morning. And yesterday I had an online shopping spree thanks to some gift vouchers (£10 Borders, £10 Amazon and £15 Amazon) that I received for my birthday. With that I managed to buy 7 DVDs and it only cost me £3 because most of it was paid for with my vouchers. So all the fun of shopping but without the guilt of spending too much money :D All but one of the DVDs were dispatched yesterday, so should be with me soon. The DVDs I bought were: Cars, Ratatouille, Wall-E (can you tell I like Pixar?!), Shrek the Halls (to complete my Shrek DVD collection), Wild Child, While You Were Sleeping and Raising Helen. All but Ratatouille are DVDs I've seen before, but really enjoyed and would like to be able to watch again when I want to. And I know Ratatouille will be good because it's made by Pixar :D

Yesterday afternoon me and mum were originally planning to go to the cinema to see Julie & Julia, but we decided against it because I was tired and mum had a headache. So we stayed at home and watched a DVD called Muriel's Wedding instead. The film was ok, but I don't think I'd watch it again. My mum really enjoyed watching it though. She chose that DVD so when we decided to watch one today it was my choice. I chose Monsters Inc, which is very funny and is my second favourite Pixar film. We both really enjoyed watching it :D

I've watched a few things on TV this week including the second part of a fantastic BBC series called Lost Land of the Volcano. I'd highly recommend watching it on iPlayer if you're at all interested in nature and wildlife. I also watched the first episode of Design for Life earlier in the week. It's an odd new reality TV show that follows a French designer putting 12 contestants who want to be designers through various tasks and eliminating a couple each week. I didn't think it was particularly good, but will probably watch next week's episode to see if it gets going a bit more.

I've also been doing a bit of sorting out in my bedroom over the last couple of days. I have 2 storage units for my CDs and DVDs, but my growing DVD collection was running out of room, so my CDs have been moved to a box under my bed (I don't need to access them much because all my music is on my iPod and my laptop) to make room for more DVDs. And today I'm tidying my bedroom because I'm having a photoshoot tomorrow and there's a chance my room might be in some of the photos, so I don't want it to look too cluttered! My photoshoot tomorrow is with Sarah, mum to Wills, a little boy who had a small bowel transplant just less than a year ago, so met her through the transplant community. She is very artistic and is currently creating a photography project about organ donation called Gifts of Life. Sarah also blogs about her Gifts of Life project here. And I've offered to be involved, so my photoshoot is tomorrow :D Just hoping I'll feel ok for the photoshoot, fingers crossed. Will blog about it afterwards.

Sunday

I felt quite tired this morning after such a busy day yesterday and woke up with a very sore mouth again. I thought it had healed, but my brace or a sharp tooth cut my mouth again in the night :( So I'm going to try to get an emergency orthodontist appointment this week. Even though I wasn't feeling great this morning I still decided to go out to browse round our local weekly carboot sale. It was very windy and I was freezing!! But I began to warm up as I went round. I spent £16 at the carboot sale this morning, but got loads for it! I got a copy of the book My Sister's Keeper (as I've lent my copy to my nan), a gamecube game to play on my Wii, 2 audio books (only £2.50 each - bargain!) and the Ashes to Ashes soundtrack CD. I also bought 4 DVDs for myself (Love Actually, There's Something About Mary, Drowning Mona and The Pursuit of Happyness), a music DVD and a comedy DVD for my mum for Christmas and a comedy DVD for my dad for Christmas or his birthday.

I felt very tired when we got home, so had a quick lunch and then a 30min rest. After listening to my Harry Potter audio book for 20mins I began struggling to concentrate and so kept missing bits of the narration. So I turned it off and planned to just lay there for 10 more mins, but I nodded off. Whoops!

This afternoon I caught up on some emails, spoke to some friends on Facebook and set my new digital photo frame up. Then my older brother Chris and his girlfriend Sophie came round. On Friday they returned from a holiday to Mallorca. It was nice to hear all about their holiday, though I think 250 photos might have been a bit excessive! And they brought me back a couple of things for birthday presents. I received a Mallorca fan:

A lovely shell box:

And a pretty pair of earrings:
While Chris and Sophie were round, I helped Alf to set up a Facebook account :D

After tea I spoke to dad about my money because my last 2 bank statements have made me realise that I'm spending a ridiculous amount of money each month. I'm not buying anything very expensive, but I'm just buying lots of little things (DVDs, DS and Wii games, clothes, concert/theatre tickets...) each month. So I'm going to set up a budget sheet in Microsoft Excel this month by adapting one my dad designed and then from October 1st I'm going to use that to keep an eye on my spending. And then hopefully I will be able to come up with a plan to stop me spending so much, as I'd really like to save some money too. I currently get Disability Living Allowance, but am going to contact my local job centre this week to see if I'm entitled to any more benefits because my ME means that I'm not really well enough to work at the moment. I'll let you know how I get on with that. And mum and dad also want me to start paying them rent now that I'm out of full time education.

I watched a bit of TV this evening and am now going to finish off on the computer and then read for a little bit before trying to get an early-ish night.

Saturday - my 19th birthday :D

I had a lovely birthday :D :D :D

I had a lie-in until about 9am in the morning and then got up and pottered about before sitting down with my parents to open my cards and presents.

These are the cards I received:
Note the card in the middle that looks hand made. My friend Claire drew that for me and it's a picture of what she imagined would be on my bookshelves :D I also received lots of birthday texts, emails, forum messages, Facebook messages and phone calls. My nan and auntie phoned in the morning to wish me happy birthday and I rang my uncle as he has the same birthday as me. Later in the day I recieved a phone call from my friend Lizzy and her daughter M and that was lovely as they both sang happy birthday down the phone to me :)

I received some lovely presents from my family and friends :D My parents bought me 4 DVDs (Toy Story, Toy Story 2, The Feeling: Come Home and Mika live at Parc des Princes Paris) as well as giving me an IOU for the Vicar of Dibley Ultimate Collection on DVD which is on its way from Amazon. I can't wait to watch all my new DVDs :D Mum and dad also got me a little gadget called Hide ID, which stamps a random lot of letters, numbers and symbols over personal details on documents, which means you don't need to shred them. Very clever. And dad bought me a lovely bunch of flowers and mum knitted me a very cute hedgehog:
From other family members I received £15 from my nan (which I'll use to buy Mika's second album) and a fantastic pair of earrings from Alf, which I've worn constantly since I unwrapped them:
I received some more jewellery too, including this beautiful pendant from my cousin:
And this bracelet from my friend and neighbour, S, who I saw for the first time in ages last Tuesday:
I received a £10 Amazon voucher from E (a friend from sixth form) and a £10 Borders voucher from H (the friend who I saw on Thursday). I don't know what I'm going to spend them on yet - probably more DVDs - but I'm looking forward to browsing. My closest friend from sixth form, Catherine, bought me this lovely photo frame with a photo of us together in Japan in it, which I know I'll always treasure:

After opening all my presents I sent lots of thank you texts and waited for Claire. She got a bit held up though attempting to make me a cheesecake as I don't like 'normal' birthday cakes, lol. So I watched some TV (a programme on C4 about Pixie Lott's debut album), checked my emails and pottered around until Claire arrived.

When Claire arrived I opened my presents from her. She bought me some yummy shortbread, a nail file, 4 nail varnishes in colours I love and a fantastic digital photo frame. I've been fiddling with the digital photo frame this afternoon and I love it! It's currently set to a slideshow of some of my Florida photos :D Then we played my favourite cardgame (Ligretto) for a bit and had some lunch before going to visit my nan. We spent about an hour at my nan's house and it was lovely to see her and for her and Claire to meet each other for the first time.

When we got back home we watched a very funny DVD called Along Came Polly and then dad did a very yummy BBQ :D And for pudding we had Claire's cheese cake which was delicious!

Me with my birthday cake:

Me and Alf:

Me and Claire:
After tea we watched another very funny film called Over the Hedge and played some more Ligretto :) I didn't manage fit any rests in yesterday though, so felt quite unwell towards the end of the day - I was exhausted, had a headache and tummyache and felt nauseus :( My Melatonin (the tablet to help me sleep) had arrived in the post yesterday morning, so I tried that out last night. I fell asleep quite quickly but woke a few times during the night, so I'll keep trying with that and see how my sleep goes. I also had my weekly night off feeds last night :)

Just before I went to bed last night I emailed my donor's sister. I email her every so often to keep her and her parents updated with my progress, as she says knowing how well I'm doing really helps them. I also email every Christmas and transplant anniversary to let them know that they're in my thoughts. I felt it was important to email last night because I'd had a fantastic birthday, but am very aware that if I hadn't recieved my transplant almost 3 years ago, then I wouldn't have been celebrating turning 19 yesterday. Yesterday I also took the opportunity to post a message on Facebook urging people to sign up to the organ donor register to enable other people to have a second chance, just like I have. My friend Claire is a teacher and she teaches 11 to 16 year olds who can't attend school for behavoural or medical reasons. She was my tutor before my transplant when I couldn't attend school, but now we're just great friends. Yesterday when we were chatting she asked me if I'd be able to speak to a group of 12 GCSE students about organ donation in one of their PSHE sessions this year. I'm hoping to do it to help raise awareness of organ donations, but although I've been confident giving talks to health professionals and adults in the past, the idea of speaking to teenagers is a bit scary!

My birthday

Just a quick update, as I did a long update yesterday evening (which you can read here) and so far not much has happened since then. However I am aware that I'm extremely lucky to be celebrating my 19th birthday today as I certainly wouldn't be if my donor family hadn't made an extremely courageous decision almost 3 years ago. I'll always be eternally grateful for my second chance at life and will email my donor's sister later to let her know.

If you're not already on the organ donor register, please click here to sign up. It only takes 2 minutes and can save lives. If you have already signed up please talk to other people about the importance of organ donation. Thank you.

Lots of shopping, seeing a friend and a success with tape

Since my last update I seem to have spent quite a lot of money. I like shopping, but for DVDs, CDs and computer games, not clothes! And with Internet shopping so quick and easy and I tend to buy a lot online. Since my last update I have bought 3 DVDs (Sister Act, The Corpse Bride and Edward Scissorhands) online, but they were in HMV's DVD sale, so were only £2.99 each. I have also used the Internet to preorder 2 DS games (Professor Layton and the Curious Village, which will be released on September 25th, and Scribblenauts, which will be released on October 9th) from GAME, as well as a Wii game (Wii Fit Plus, which will be released on October 30th), which I wasn't intending to buy until I saw it very reduced at Zavvi.

And then I went into the city yesterday where I bought some more orthodontic wax for my braces, a music DVD for my dad for Christmas and a fantastic t-shirt. My new t-shirt has a black background and a realistic wolf head on the front and back. It cost more than I'd usually pay for a t-shirt (£17), but I love it :D And I preordered Mika's second album, 'The Boy Who Knew Too Much', from HMV. It will be released on September 21st and I'm very excited as I'm a big fan of Mika. It's frustrating though that I'll have to travel more than 20miles into the city to get a copy on release day, as there are no music shops nearer and none of the online shops suggest that I'll get it delivered on release day. Never mind, I have a hygeinist appointment on the 21st anyway, and that's on the outskirts of the city, so we won't have to go too much out of our way to pick it up.

It was great to see my friend H in the city yesterday, we get on really well and it was a while since we'd seen each other, so we had loads to talk about. I was out the house from 10.30am til 5pm yesterday, so it was a long and tiring day for me, but I enjoyed it :D And the final thing I've bought since my last update is my Christmas cards! I sent off the order form a cheque yesterday morning. I always buy charity Christmas cards, so this year I've bought AYME ones.

I've not been feeling too bad this week, as I haven't been as tired as usual, despite still being very nocturnal. I'm hoping the Melatonin will arrive soon, but I suspect it could still be a little while because of the local post strikes. And I've been feeling surprisingly cheerful and optimistic :D I've found a better tape to use to secure my tube in place overnight too, so my cheek is no longer red and sore :) It comes off very easily in the mornings which is great, but the downside of this is that it sometimes falls off in the night! I'll keep persevering though as it seems to have been staying on better during the night after a bad first night. And my mouth is feeling better too, but is still a bit sore.

To get a little bit of exercise on Wednesday me and mum walked round the village and called in at the library to see if any of the audio books I'd requested had arrived. And they had :D So I've been listening to Harry Potter and the Philosopher's Stone in my rests since then. I've found that after listening for about 20mins of my 30min rest, I begin to lose concentration and so miss bits of the narration. So I was planning to shorten my breaks to 20mins, but today I was fine listening for 30mins, so I'm just going to see how it goes.

I've watched a couple of films over the last couple of days. Spy Kids 3D came from my Tesco rental list, but frustratingly there were no 3D glasses enclosed, so the DVD was unwatchable! Grrr. So I sent it back with a note explaining the problem. I received an email the following day asking if I'd like to request another copy, but I suspected that I might have the same problem again, so have requested the 2D version instead. I also received While You Were Sleeping from my rental list. I think Sandra Bullock is great, so am watching a lot of her films at the moment. I was surprised at how good While You Were Sleeping Was, because although the plot was quite predictable the acting was great and the film was very funny. I'd highly recommend it and am sure I'll watch it again. Today I watched an interesting film called Grizzly Man that I recorded from the TV last night. It was very odd and told the story of a man who lived with grizzly bears in the wild every summer for 13 years. It was strangely compelling though.

I've also watched a few interesting things on TV too. A little while ago I noticed that my favourite Doctor Who episodes (The Empty Child and The Doctor Dances) were being repeated on BBC 3, so I recorded them. I watched them last night with mum and they were just as good (and scary) as I remembered them to be. Today I was flicking through the TV mucis channels when I saw The Killers live at V Festival 2009, so watched that. I really like The Killers' music and think they look amazing when I've seen them live on TV. I really want to see them in concert now :D

I have also started a novel for the first time in a little while. It's called While My Sister Sleeps and is by Barbara Delinsky. A friend mentioned that she'd read it and enjoyed it and I saw on the Internet that it was being compared to Jodi Picoult books (I love My Sister's Keeper), so thought I'd give it a try. I read quite a bit when I sat down and started it, but haven't picked it up again since. My concentration isn't very good at the moment, but I'm going to try and persevere with the book, so will let you know what I think when I've read a bit more or finished it.

This evening I had a fiddle with my Wii console to try to get it online properly. In the past I've been able to access the Internet from the main console and have been able to use the Wii channels that need the Internet, but have been unable to get any of my games online. So tonight I tried it and discovered I couldn't get on the Internet at all from my Wii, so reset all the connection settings and was delighted to find it works! So I've been playing Mario Kart Wii against other people on the Internet :D I thought I was quite good at Mario Kart, because I always beat any family members or friends that I play against, but everyone I raced against online was a lot better than me, so I need to get practising! And I also need to work out how I can race against specific friends who also have a Wii and Mario Kart. But that's quite exciting :D

My younger brother, Alfie, started sixth form last Friday and is enjoying it so far. He's never liked school before, so I'm hoping that sixth form will continue to go well. Not sure he'll be so happy though when the coursework starts piling on! He's not sure about his subject choices as at the moment he thinks he'd like to be a vet, but he's not doing chemistry. So he says he's going to see about changing it next week, but I'm not sure if he'll actually get round to it. Never mind, he seems happy enough.

Last week I had Friday night off my feeds, but this week I've decided to go on my feed tonight so I don't run the risk of not feeling great tomorrow due to dehydration, and I'll have tomorrow night off my feed instead. I'm hoping I'll sleep ok tonight because it's my birthday tomorrow. I'm really excited, lol, makes me feel like a kid again getting so excited about my birthday! Will try to blog again on Sunday or Monday to let you know how it went.

My friend Claire is going to come round at about 11am tomorrow morning and together with mum we're going to watch DVDs, but we'll decide which ones tomorrow. At some point in the afternoon me and Claire will pop to visit my nan as she lives locally, but her and Claire have never met before. And then in the evening dad is going to do a BBQ - yummy! On Sunday morning I'm hoping to browse round the local carboot sale if I feel up to it and at some point my older brother Chris and his girlfriend Sophie will pop round.

I'd like to say a huge congratulations to Live Life Then Give Life for winning Best New Charity 2009 at the Charity Times Awards on Wednesday. You can see Live Life Then Give Life's blog about the win here.

Health, braces, birthday plans and a nice week

Nothing big has happened since my last blog update, but lots of little things seem to have been happening, so I'll try not to make this blog post too long or too disjointed. Hope everyone reading this is well.

With regards to my health, I've been trying to introduce four 30min rest periods each day into my routine, but I've not been doing very well with this as there just doesn't seem to be enough time in the day! And I've not managed to get hold of any absorbing audio books yet, so have been finding rest periods quite boring, but hopefully the Harry Potter audio books I ordered from my local library will come in this week. I've been managing between 1 and 3 rest periods per day and am not sure if I've seen any effect yet. I've still been quite nocturnal, but hopefully my Melatonin will arrive soon, so that should help. There is a local post strike though, so I'm hoping it won't be delayed with that. I'm still feeling tired, but maybe a little less tired. And I'm feeling unusually cheerful and optimistic at the moment :) I'm going to try to make an effort to fit at least 3 rest periods into each day and if I do that each day then maybe I'll see more of an improvement in my health, I hope so.

I had one night off my overnight feed last Friday :) So had just 6 nights of feed last week. I weighed myself on Tuesday morning, but was a bit disappointed to find that I'd only gained 0.2kg in a week with 6 nights of feeds. I'd been expecting a bigger weight gain because the previous week with 7 nights of feeds I'd gained 1.6kg. My weight is never predictable though, I guess it's just one of those things. So I'm sticking with 6 nights of feed per week for now because I'm still 3.7kg away from my target weight. My cheek is still very red and sore from the 2 tapes I've been using to hold my tube in place at night, so I'm trying a new tape out from tonight. Fingers crossed that this one will be kinder to my skin.

Around the middle of last week the inside of my right cheek was cut very badly with my braces. I think it must have happened while I was asleep and I suspect that it was because my teeth are moving now that I've had the 4 extractions. So since then I've been using orthodontic wax on all the brackets on the right side of my mouth to prevent them from cutting my cheek any more. My cheek has been very slow to heal though, which has made eating quite difficult. The inside of my right cheek now seems to be almost completely healed at last, but last night my braces cut the inside of my left cheek! Grrr. I was running out of the orthodontic wax towards the end of last week, but luckily I managed to source some in Boots and it wasn't too expensive either. So I'll just keep waxing the brackets until my mouth is completely healed. It's a bit of a tricky process with the wax though as sometimes it just doesn't stick, which can be very frustrating if it's late at night and I just want to go to bed. And I have to take it off before I eat or brush my teeth too, as I think I've eaten some wax in the past! And the annoying wire I mentioned previously is still coming out of the bracket every time I eat, but I've become quite adept at putting it back in place now.

In a previous post I mentioned a little boy, E, who has been very ill recently. E's latest bout of rejection has severely damaged his bowel, so he will need a second transplant. E is such a fighter though, so I know he'll keep fighting. He's feeling better in himself though and is looking forward to the arrival of a little sister within the next week or two. Last Wednesday me and mum sent a parcel for E and his mum to cheer them up a bit. Unfortunately there is currently a local postal strike, so the parcel was delayed, but they received it on Monday :)

This week I've planning my birthday, as I'll be 19 on Saturday :D I've invited my friend Claire over for the day and we're going to watch DVDs with my mum. At some point during the day me and Claire will also pop round to see my nan as she only lives a 5 min drive away and Claire and her have never met before. Then in the evening dad is going to do a BBQ, so I've got my fingers crossed that the rain stays away. If it rains though he said he'll just do it inside on the grill ;) And I'll probably see my older brother Chris and his girlfriend Sophie either on my birthday or on the Sunday. They're on holiday in Mallorca at the moment!

The friend who I was meant to be seeing last Friday had to cancel :( But I caught up with another old friend on Tuesday. S only lives just across the road from me and we used to be very close friends. But she's a couple of months older than me, so went off to uni last September and so we've not really kept in touch. So it was lovely to catch up with her on Tuesday. I'd assumed she'd just come round for about 30 mins, but we had loads to talk about so she ended up staying for almost 3 hours! It was great, but I was very tired afterwards!

My nan came round on Sunday afternoon and stayed for tea. She lives locally now so we see her most weekends, which is lovely. Everyone had a little bit of alcohol with the evening meal. My nan only had a very small amount of alcohol, but she got very tipsy. It was so funny! :p

As you will know from previous blog posts, I am a huge fan of Mika. He was on Jonathan Ross on Friday night to promote his new single 'We Are Golden' which was released to download on Sunday and in the shops on Monday. I've bought it of course and I really hope it gets to number one on Sunday in the charts. I'm really looking forward to the release of his second album on the 21st September :D

I've been watching quite a few DVDs recently as the Tesco DVD rental service I've joined is proving to be great :D The turn-around of DVDs is very prompt (unless of course there's a stupid postal strike on!) and all of the DVDs except one that I've received have been in perfect condition. One froze every so often, but when I sent it back there was an option to report that it was a faulty disc, so I did. I watched Hairspray which was ok, but wasn't as good as I expected it to be, Wall-E which is amazing and I'd highly recommend it, and The Secret Garden which was very good. And I borrowed Wild Child a few days ago from my local library, which was actually surprisingly good :) On Tuesday I watched a drama that I'd recorded off the TV a few weeks ago. It was called Gunrush and was shown on ITV. It was very well made, but quite depressing. I also finished a good book this week called Gifted by Nikita Lalwani which I'd recommend. I'm struggling to read books at the moment because my concentration isn't very good, but Gifted gripped me.

I've been out with my mum a few times in the last week. I went into town last weekend to help look for a school bag for Alf. He started sixth form on Friday and although he doesn't talk to me much, I think he's enjoying it so far. The school bag search was ridiculous as Alf really couldn't be bothered and no sooner had we got into town than he'd met up with some friends and wandered off! Mum was very patient though and found him a bag that he was happy with eventually. It was quite a successful trip for me too as I persuaded mum to buy me 2 DVDs for my birthday and I bought myself some much needed shoelaces, a great t-shirt from New Look and a new DS game - Pokemon Platinum :D I'd not played on a Pokemon game since Pokemon Silver about 10 years ago, but thought I wanted to try one again. So a couple of weeks ago I found a cheap copy of Pokemon Platinum on the Internet and so ordered it. When it arrived I was disappointed to find that it didn't work on my DSi. So I sold that to Alf as it worked on his DS and ordered another cheap copy from the Internet. I had the same problem so am trying to send that copy back. I searched on the Internet for the error message I kept getting and discovered that the 2 games I'd bought had been pirated copies. The original DS that Alf has can't recognise fakes, but my more advanced DS recognises fakes and so refuses to play them. Grrr! So on Saturday I paid full price for a genuine copy off the high street. I've had lots of enjoyment playing it though :D

This week me and mum also went out to a home furnishings shop. Mum of course was interested in looking at the knitting stuff, but we were both shocked to see that you had to be 25 to buy knitting needles or sewing kits!!! Mad! I looked for a thicker duvet for my bed for winter (as I only have a light summer duvet), but the store had switched suppliers so currently had no duvets in stock and wouldn't be receiving any more til the following day! I also looked with no success for a fleecy blanket to keep me warm when I'm curled up on my sofa, but none there fitted in with the colour scheme of my room, so I'll look elsewhere. I did however manage to get some new curtains for my room and a matching cushion. My room colour scheme is lilac and blue, so I'd originally had lilac curtains. However because they were so thin and pale they let all the light in in the mornings. So I bought some thicker darker blue curtains. Me and mum had fun putting them up together that afternoon, but I'm really happy with them :)

I've recently discovered that there are Japanese evening classes held about 20 miles away from where I live. I loved studying Japanese at sixth form and don't want to lose all the Japanese I've learnt, so am thinking about doing an evening course for a term. There are 4 or 5 different levels for different abilities, so I should be able to do it at a level that's right for me. I've decided not to do the evening course this term because I've not really had chance to give it much thought, but am considering doing it after Christmas. Putting it off til then will give me a chance to work out how I'd get there one evening a week and will also give me a chance to go over my sixth form notes to refresh myself on the Japanese I've learnt. I'm a bit unsure though as I'm quite shy in social situations. But I know it would be a great opportunity and I think my health would be up to it. Will let you know what I decide to do.

On Tuesday evening I watched a great nature programme on BBC1 with my family called 'Lost Land of the Volcano'. I'd highly recommend watching it on iPlayer if you missed it. It got us all inspired, but we can't really afford any exotic holidays, so we're planning to go to a local safari park in a couple of weeks' time :D Mum has got some Tesco clubcard vouchers, so hopefully they'll contribute towards the price. It should be a good day, but I'm a bit nervous about us all doing something together as a family because we've not done anything all together for so long.

On this post I mentioned my friend Lou who was planning to do a sponsored tree hug on Sunday. Well she did it! :D What an inspiration! You can still sponsor her here.

Sorry for such a long blog update, I know I write too much! I'm going to leave it here because I think I've blogged about everything I wanted to blog about and I don't want to make it any longer for you to read. Also, it's currently 1.10am on Wednesday morning and even though I feel very nocturnal, I think I ought to get to bed!

The random dozen meme

1. When you go to the supermarket, what one thing do you get every single time, besides a funky-wheeled squeaking trolly full of frustration? ... Croissants :D

2. What is something that people are currently “into” that you just don’t get or appreciate? ... Knitting, lol! And the Twilight books.

3. What is something that really hoists your sail that other people might feel “ho-hum” about? ... Organ donation

4. Favorite song to sing in the shower or car? ... Anything by Mika :D

5. A really great salad must have this ingredient? ... I hate salads!

6. What advice in a nutshell would you give to new bloggers? ... Try to blog regularly rather than doing it weekly or so and ending up with ridiculously long blog posts that you worry will scare people away!

7. What was the alternate name that your parents almost named you? Do you wish they had chosen it instead of the one they gave you? ... I was almost called Rosie, until my dad's sister named her dog that! Or if I was a boy I would have been named Jack after my grandad. I'm very happy with being called Molly though :)

8. What in your life are you waiting for? ... For my health to improve so I can get on with my life and either go into higher education or get a job.

9. You get a package in the mail. What is it, and who is it from? ... Probably a DVD, DS game or Wii game that I bought from Amazon, HMV or Play.com.

10. Today–what song represents you? ... I have no idea at all, lol

11. What is one thing that blogging has taught you about yourself? ... I write too much!

12. What clothes are you wearing today & what do they say about you in general or specifically how you’re feeling today? ... I am wearing jeans and a Mika t-shirt under a casual grey hooded jacket. Says I don't really care too much about what I look like, but prefer to be comfortable. The hooded jacket is because I'm always cold (a frustrating symptom of M.E.). And the t-shirt says I'm a fan of Mika.

Stolen from Posh Totty.

A friend's blog

I will write a blog post soon with updates about what's been happening to me, but I just wanted to let you know about a blog that a friend of mine has just started. You may remember that I've mentioned a very special boy called Will before - see here and here. Will's mum, Lorraine, has just started up her own blog, which you can find here. So please have a look. Thanks.

Appointment with an occupational therapist

Today I returned to my local ME unit for an appointment with an occupational therapist (OT), L. The appointment went well and I found it very helpful :)

L had been through my activity diary and colour coded it. Cognitive activities were in green, physical activities were in blue, rest was in pink and sleep was in yellow. The majority of my diary (around 90% of the time I was awake) was green, with a small amount blue (about 10%) and no pink at all! So I have to try to incorporate rest periods into every day (ideally 4 lots of 30mins). I hate doing nothing, so have been told that resting can be listening to audio books. I've tried that once so far, but wasn't very impressed with the audio books I found around the house. So I've ordered some books on CD that I've enjoyed reading from my local library.

I've been advised to try to split up my activities (so I don't spend 3 hours solid on the computer for example), perhaps using an alarm to help me keep track of the time, and to forward plan activities when possible. This all makes sense to me, and L said if I can make time to rest then hopefully in a year's time I'll be feeling better, whereas if I was to continue like I have been without making time for rest, then I'd likely be in exactly the same position in a year.

I asked L about her opinions on me taking an evening course in Japanese this year, as I loved studying Japanese in sixth form. She thought that I should be ok with that, so will have a think and look into when the course starts.

I was also given information about some websites that I can use to buy Melatonin online, so am going to do that ASAP, as I feel the sooner I can get it the better, as I'm not sleeping well at the moment. It's quite reasonably priced too. And I've been given details of cognitive behaviour therapy (CBT), though I'm not sure if I'll try that or not. L leaves tomorrow, but I've got details of someone else to contact if I have any questions or need any help.

A busy few days

On Sunday I felt exhausted after a busy afternoon the day before at the family get together. But I decided to go out in the morning to browse round a local carboot sale. Had a nice time at the carboot sale and bought myself a couple of Pixar DVDs. But I regretted it afterwards because I was even more exhausted, so spent the rest of Sunday relaxing.

On Monday I spent the earlier part of the day relaxing and tidying my room up. Then yesterday afternoon my friend Catherine came round. Catherine was my closest friend at sixth form, but because she lives quite a distance away, we've not managed to meet up much over the summer. Catherine is going off to university in a couple of weeks, so we were both glad that we managed to meet up before she goes. Catherine's mum came round too, so we all had a lovely evening. Catherine and her mum both knit though, so they spent ages chatting about knitting with my mum, which I found boring! Catherine liked my new look bedroom and we had a lovely BBQ for tea, cooked by my dad :)

Yesterday evening I was very nocturnal again, which is getting very frustrating! So I was on my laptop quite late into the night yesterday and got chatting to an old friend on Facebook. We've not seen each other for over a year, so have arranged to meet up on Friday. And today I arranged to meet up with another old friend next Tuesday before she returns to uni. This friend lives just across the road from me, but I can't remember the last time I saw her! So I'm really looking forward to both of those events :)

This morning I weighed myself, like I do every week, and was very pleased to find that after my first full week on overnight feeds I've put on 1.6kg in just 1 week! My dietician is very happy and so I can now have one night off overnight feeds a week. If my weight increases again from now til next Tuesday then I can decrease my overnight feeds to just 5 nights a week. Then I'll stay on 5 nights a week til I reach my target weight (which I'm now only 4kg away from) :D And I've found a better tape to use to hold my tube in place, so my cheek isn't sore any more. This tape is not as strong though, so if my tube accidentally gets pulled, then the tape rips. But it's fine if I'm careful :) And my tummy aches have almost completely disappeared this week which is amazing as I'd been really suffering with them for over a year. Fingers crossed that they don't come back!

Today I had a madly busy day, so am looking forward to doing nothing tomorrow :D This morning I had a gynaecology appointment at Hospital A. On the way there me and mum managed to get lost, despite having done the journey countless times before! And then we got to the hospital and got quite confused because the road we needed to take on the hospital site was closed and we'd never been to that department before! But I arrived in the department just before my appointment time of 11.30am. And then I wasn't seen til 12.15pm because they were running late! But the appointment went fine and the doctor I saw doesn't want to see me again :) Then mum grabbed some lunch and I had a look round the gift shops in the concourse where I bought a couple of people's birthday presents.

Then we headed to the orthodontic department (I rang them this morning to ask for an emergency appointment and they said to turn up at 2pm and they'd fit me in when they could) just before 2pm. And I was seen at 2.15pm :) My braces were easily fixed, but the orthodontist warned the wire would probably come loose again. However he said I should just be able to pop it back in place. Next time I see him (in 8 weeks time) he'll change the wires for some thicker ones, which will stay in place better. The wire has already come out once since then (it's too short, so pops out at the slightest pressure from food or my tongue), but after lots of fiddling I managed to get it back in place. Then I ate 2 croissants for lunch (my appetite seems to be coming back a bit, which is good :)) and we left the hospital at long last. Me and mum then went to visit my friend Claire.

I decided a couple of days ago that I'd like a hobby, so put out a message on Facebook asking for suggestions. Lots of people suggested knitting, but as my mum is obsessed with knitting I don't fancy that (and I don't have the patience). And another popular suggestion was photography. I only have a cheap point and shoot compact digital camera and don't want to buy any expensive equipment, but am going to have a play with my camera and see what I can do :) I'm not very artistic though, so this could be interesting, lol :p

Yesterday I heard from a friend in the transplant community who has a little boy, E, who is 3 years old and had a transplant like mine 2 years ago. E had a very rough time after his transplant with lots of complications and severe rejection, but this year he'd been going from strength to strength. So it was quite a shock yesterday to hear that E is currently very ill in Hospital B with 2 infections and rejection. Tomorrow his parents will find out how serious his rejection is, but it looks like there is a chance it may be so severe that he could need a second transplant. And E's mum is currently pregnant and expecting a little sister for E in just 17 days. E and his family are in my thoughts at the moment, but I wish there was something more I could do for them.

My friend Lou is doing a sponsored tree hug on Sunday to raise money for the fantastic charity Live Life Then Give Life. Lou has always been a fighter and a real inspiration - she beat cancer as a child, received a lung transplant just over a year ago because she had end stage lung disease, and is now battling heart failure and a form of post-transplant cancer. But she remains cheerful throughout it all and won't let her health get her down. Please sponsor her here.