Nocturnalism, AYME RC, family meal and music

I've not left it long since my last blog update but from looking at my reminder notes I think this might be quite a lengthy blog, sorry. I'll try not to waffle too much! :P

On Fri I heard from Liver Direct and because my Tac level was high again they wanted me to lower the dose. I need all my bloods repeating soon, either this week or next week I'm not sure exactly when because I haven't received the bloods letter yet. If the rest of my bloods are ok then they can go back to 3 monthly, so fingers crossed. My Tac level might need checking via a fingerprick more regularly though until it stabilises around my target level.

On Fri my dietician also got back to me and confirmed that the clinic at Hosp A on 10th March will be a joint clinic with both of my consultants. I've already started a list of things I want to talk to them about! :P

And on Fri I checked my bank account online and saw that my backdated ESA had gone in :D I I also heard that my friend Rosie has been granted ESA without requiring a medical assessment, yay! :D On Sat I received a letter in the post confirming the date change of my next Pathways to Work interview. That morning I also received a letter asking me if I'd like to trial some new illeostomy supplies! I think a company must still have me on their mailing list despite me having my illeostomy reversed over 18 months ago, lol.

On Sat I heard that my friend Holly C's Give and Let Live Books were ready so I ordered one :) You can find out more here.

I thought my tummy pains were much improved this week because for a good few days I either didn't get any pains or they were much more mild. However yesterday they were bad again, so I'll have to see how they go.

Today is my weight day and my weight was 52.1kg, so almost the same as it was last week. I've emailed my dietician from Hosp B to let her know and am waiting for a response.

I've been very nocturnal again this week. Starting watching a film at 12.30am one night probably wasn't my best idea though! :P And I've really struggled to get up some mornings. Waking up most morning between 9 and 9.30am isn't ideal especially if I didn't get to sleep til 3am, so when that happens I go back to sleep for another hour or so but then really struggle to get up when my alarm goes off at 10.30am.

Before my transplant I had really thick hair, but after my transplant it became really thin as a result of some of the medications I was on. Since then it got a bit thicker but has now gone very thin again :( I think I at least need the split ends trimming so am going to try to get an appt with my favourite hairdresser and ask her advice.

On Sun I received an email from someone from AYME saying that I am now the regional contact for my area :D I couldn't open the file I was emailed with the contact details of the AYMErs who live in my county, so that has been posted to me instead. When I receive that I'll write to them all to introduce myself and I think I might send them a simple questionnaire asking whether they'd like to be in touch with other AYMErs locally and what else I could do for them. I hope to organise a local meet-up at some point in the future, but I'll probably wait til I feel a bit better to do that.

Yesterday me and mum received an email from my nan's carers and they told us that she'd cancelled them because she said she didn't need them any more! She does need them, I think she's just worried about inconveniencing people. So we gave the carers dad's mobile number so they could ring him at work to talk to him about it. Dad told the carers to ring my nan and say that dad had said that she needed to keep the carers for now, but he'd ring later that day and discuss it with her. Dad phoned nan last night, but I'm not sure what the outcome of that was, hopefully he'll have managed to persuade her to keep the carers for now.

I've been out a few times since my last blog update. On Fri I went out with my mum to a local town to pick up a wheelchair from the Red Cross for my nan to borrow. We really struggled to find the Red Cross place in a local town but eventually found it down the end of a tiny road through a cemetery after phoning dad for directions. When we went in the man told us that the wheelchair had been delivered to my nan at home just half an hour earlier. Lack of communication there I think! Me and mum didn't feel like going straight home so we went into town to look round the shops. Mum found a fellow knitter while looking at yarn and despite having never met before they then proceeded to have a 15/20min conversation in the shop. I got bored so wandered off :P I picked up My Big Fat Greek Wedding on DVD from a charity shop for just £1.50 - bargain. I was looking for some slipper boots to replace my current ones which are falling apart, but none of the shoe shops had any in, they seem to have got rid of the winter stock now.

When we got back from the shops Alf was watching an anime film on TV so I asked him which one. He told me the title and I told him that it was made by Studio Ghibli. He checked and was really impressed that I knew that so I felt very smug. Then I turned round and walked straight into the door frame which ruined the effect. And it hurt a bit too. Alf of course found this hilarious!

And later that day I walked round to the post office. I'd been chatting to a sixth form friend, E, on Facebook chat and we'd decided to swap DS games. So I sent her New Super Mario Bros and she sent me Scribblenauts. So I went to the post office to post my game off to her. She got my game yesterday and I got Scribblenauts on Sat :)

Also in the post on Sat me and mum each got a very cute home-made card from M, Lizzy's daughter thanking us for the presents we'd given her last time we saw her :)

And on Fri eve Claire came round for tea and we played on New Super Mario Bros Wii together. We made loads of progress and were almost at a save point but then the Wii froze and we lost all the process we'd made that night! Grrr.

I didn't go out on Sat. But I seemed to have quite a productive day which included helping my dad sort my nan's laptop out and sorting through more old family photos with mum. We did more of that yesterday too and are making great progress with it. I really enjoy looking through old photos :)

On Sun it was the extended family meal to celebrate my uncle and his wife's 45th wedding anniversary. It was realised quite early on that Alf wouldn't be going, he'd gone out to a party the night before and so was very ill and hungover. What a muppet! I was very nervous about it and felt quite tired that morning, but decided to go for it. And it wasn't as bad as I expected. I actually quite enjoyed it :) There were 14 of us there in total, which sounds a lot but is less than I expected because my dad's side of the family is huge. There was me, my mum, my dad, my uncle (dad's older brother) and his wife (who's anniversary it was), their 2 sons and their wives (their daughter couldn't make it but did phone during the meal). One of their sons doesn't have any children, but the other had 3 who were there (and 2 older step children who weren't there) aged 9 (a boy), 11 and 15 (girls). Then there was also my dad's younger sister and my nan.

My uncle didn't mention my ME which was great (he was the one who was funny about it before). He did think I was under 16 though when it came to paying! And my nan looked happier than I've seen her in ages :) I was a bit sociable and everything went well. I even felt like I fitted in which I don't always do amongst my extended family. I managed to find some food that wasn't too spicy too. I did feel a bit odd though when talking to my 15 year old second cousin. She's 3 and a half years younger than me, but seems to have experienced more of being a teenager than I have if that makes sense. Things like her telling me and my nan about her favourite alcoholic drinks is just completely alien to me. I took quite a few photos on my phone which have come out really well, so I've emailed them to someone and printed out a copy to go on a thank you card to my uncle and his wife because the paid for all of us at the restaurant. And I'm going to email some photos to some of the family who weren't there and I'll print out the photos for my nan.

My dad was on call with work at the weekend and he had to go out on Sun night. I think the electricity had gone down at the hostel which caused serious problems because it meant that the tags of the residents who were tagged stopped working. My dad works with housing for the homeless in the city.

I didn't go out yesterday either, but Chris and Sophie came round which was nice :) I chatted to Chris which got me very excited because he'll get a new phone on his contract in Sept and is going to give me his current iPhone! :D Just need to work out if I can afford a contract with it! I think Chris said it costs him £35 a month for unlimited Internet access on it, which is quite a bit more than the £5 or so I currently spend on my phone a month! I should be able to manage it though now I've got granted ESA . Chris dropped his iPhone the other day and the screen has cracked. But rather than getting a new one with the insurance now he's happy to use it with a cracked screen until Aug and he'll get a new one then, so when he passes it on to me in Sept it'll be almost new :D

Someone from the Mika fan club is going to purchase one of my 3 Mika tickets once their Paypal account is verified. But that still left me with 2 to sell that no-one on the Mika fan club wanted. So yesterday evening Chris helped me put the pair of tickets on eBay. I put them up as Buy It Now and someone bought them within 4 hours! ThePaypal payment has already gone through, so I'll post the tickets off later today :)

And yesterday we got a new TV delivered. Dad chooses to rent the family TV and we did have a 27 inch box shaped one. But then dad discovered that he was being vastly overcharged for that so complained. And we now can keep paying the same amount but can rent a 32 inchflatscreen TV that has built in Freeview and is HD ready. It's much nicer than our old TV. It doesn't seem much bigger but has a better picture. It makes the TV in my bedroom seem even smaller though! :P I've worked out how to use it, but dad hasn't sorted out the surround sound speakers yet, so needs to do that soon so we can get better sound from it.

On TV since my last update I've watched the music channels, The Review Show (just the end part because Marina and the Diamonds performed), the first 2 parts of Syrian School, Tracy Beaker Returns, the last episode in the series of Nurse Jackie (I'm really going to miss it until the BBC televise series 2 later in the year) Film 2010 and the BAFTAs. If you missed it but are interested you can read more here or find the list of all the winners here. I was disappointed that Precious only won one award and that Up In The Air won an award! I was pleasantly surprised that The Young Victoria won 2 awards and I was happy that Up also won 2 awards, though I would have preferred Coraline to win animation.

Since my last updated I've watched a few DVDs. I rewatched Up which I love :D Pixar are great :) If you've not seen Up I'd highly recommend it for both children and adults. I watched The History Boys with my parents and although it wasn't a bad film, it just wasn't my kind of film and I got a bit bored at some points in it! :P Another new film I've watched is Ghost, which was very good.Whoopi Goldberg was great in it :D And I started rewatching Charlie and the Chocolate Factory but got interrupted so haven't rewatched much of it yet.

As I said earlier in my update, I've made more progress on New Super Mario Bros Wii and have also played more of Picross DS and have started playing Scribblenauts on my DSi too :) And Alf borrowed my other new DS game (Ace Attorney: Phoenix Wright) before I had chance to play it. He really enjoyed that though, so now he's finished with it I'm looking forward to giving it a try.

I can't read much at the moment but did flick through the latest Which magazine when mum brought it back from the library. I couldn't believe that the hard disc recorder that the rated the highest is a newer model of ours, that has completed wiped itself of all recorded programmes on a few occasions! I wouldn't buy from that manufacturer (Humax) again! And our broadband provider (Orange) came second to bottom in their ratings, but we've not had many problems with them.

Despite Marina and the Diamonds' debut album, The Family Jewels, not being released til yesterday, I preorded it from Amazon and it arrived on Fri! I wasn't too impressed with the case being cracked though, but luckily I had a spare CD case to put it into and the CD wasn't damaged. The day before that I'd been listening to it online here, but it was great to get a copy of the CD. I think since Thur I must have listened to it about 10 times, I love every song on it and can't get enough of it at the moment :D And it's currently the second best selling album on iTunes :) The top selling album is the Glee album though and I doubt it'll outsell that! It was interesting reading reviews of The Family Jewels online, the reviews either loved or hated it, there were no neutral reviews. I think she must be a bit like Mika, people either love or hate her music!

This week Ellie Goulding's latest single, Starry Eyed, has also been released this week. I've bought it. It's currently the 3rd best selling single on iTunes :) I'm looking forward to her debut album next week but am not sure whether to preorder it or whether to wait for it on Spotify. Ellie Goulding was on Radio 1's Live Lounge this morning and you should be able to listen to it here shortly.

I've also listened to the Noisettes album, Wild Young Hearts, a few times in preparation for the concert tonight! I'm not particularly excited about it, probably because I just like their music rather than love it and I'm more excited about Sun, but it should be good. And because it's only in the local city it shouldn't be too tiring :) I was worried when we had snow yesterday morning, but luckily it all seems to have melted now so it shouldn't disrupt our plans.

And as I'm writing this I'm listening to The Boy Who Knew Too Much by Mika. I'm soooooooooo excited about seeing him in concert for the 3rd time on Sun, yay! :D :D :D I've just emailed my friend H (who I'm going to the concert with as well as my mum) to share my excitement :D

Also this week Claire is coming round on Fri eve and then me and mum might be going to her house on Sat (depending how I feel) to meet her parents for the first time.