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.