Virus and new laptop! :D

Sorry it's been a little while since my last update, I've not been feeling very well for a few days. I thought I was just taking a while to recover after my busy day on Mon, but on Wed night I think I developed a headache. I rarely get headaches and even if I do they usually go very quickly or after taking some painkillers. But this one lasted for 3 whole days and both Paracetamol and Codeine made no difference :( And for most of the time I had the headache, using screens, such as going on the Internet on my laptop or watching TV made it worse. It got better and worse during those 3 days, but at it's worst I was in tears with it. I was a bit worried as I'd not had a headache that severe since when I was in hospital after my transplant 3 years ago. Then they suspected menigitis, but a lumbar puncture showed it wasn't, so it was just blamed on a reaction to the anaesthetic. And I know headaches can be an ME symptom, so was also concerned that it might just be a sign of my ME getting worse. But after I'd had the headache for about a day my glands became swollen, my throat was sore and I just wanted to sleep. So it looked like I had a virus. For 3 days I did very little and slept for about 12 hours each night and then went back to bed for about 3 hours during the day. But this morning I woke up feeling much better and my headache had finally gone :) My glands have gone down, but my throat is a bit sore, I have a cough and might have a cold coming on. But I'm so happy that my headache has gone :D And I've not slept during the day today either.

And I'd like to thank R for finding out that I was not feeling very well either through Facebook or AYME and sending me some lovely texts :)

Cutting out rice hasn't made my tummy pains stop. I think they might have been a bit better, but I'm still getting them. I'm not sure if that could be because I've been drinking my high calorie drinks too quickly though.

I received a letter in the post on Thur saying that my current ESA medical certificate was about to run out, so I needed a new one from my GP. Luckily my GP is great, so I emailed him on Thur morn and then he replied later saying that it would be ready to pick up on Fri. I didn't feel well enough to go out on Fri, so mum picked it up for me and posted it off. Hopefully after my ESA medical assessment on Wed they wont need medical certificates any more. I'm a bit nervous about that though.

I received an email a few days ago inviting me to a big get-together that most of my friends from sixth form will be attending when they're back from uni at Christmas. I thought it would be in the city for a couple of hours, but it's a 24 hour sleepover type thing at someone's house. So there's no way I'm going to be able to manage that. I did think about maybe just going along for a couple of hours, but it's on Dec 22nd-23rd, so if I did that and it exhausted me, then it could mean I'd feel rubbish over Christmas. So I'm going to have to give it a miss which is disappointing. Catherine (my closest friend from sixth form) wants to meet up with me separately though, so hopefully we'll be able to make that happen. And I've been in touch with another friend from sixth form via text and Facebook over the last few days and we're hoping to meet up sometime soon too.

I've been invited to a couple of AYME meet-ups over the Christmas period though, so might try to attend one or both of them. But my parents wont give me lifts (more persuasion may be needed) and have said if I want to attend either of them I'll have to go on the train. In the car the journeys would take an hour and an hour and half (which are manageable), but both of them will take longer on the train because I'll need to go in to London and then out again.

I think I might have mentioned a while ago that I've applied to become my local regional co-ordinator for AYME because they currently don't have one for my area. I've got as far as being sent the CRB check forms (which I need to do because I'll be handling young people's details), but haven't got past them yet because they look daunting :P

And a couple of days ago I joined AYME's members advisory panel (MAP), so I'll be involved in giving feedback on their bi-monthly magazines and judging competitions :)

A couple of days ago I broke my second lamp in about a week! My bedside touch lamp broke a little while ago and then yesterday I was moving the angle of the light on the lamp on my desk and it snapped, whoops! I need to buy a new touch lamp for next to my bed, but the one I broke more recently was a spare lamp I'd borrowed (because my desk lamp is currently next to my bed), so I don't think that'll need replacing.

Yesterday I started writing my Christmas cards and have now written the majority of them :D I've got a few more to write though and am still waiting for a few addresses that I've requested via Facebook or text. And I have one more Christmas present to buy, but I'm hoping that I might be able to go shopping in the city tomorrow morning before my physio appointment at Hospital A in the afternoon :)

I'd just like to say a huge congratulations to Holly S who won the national vinspired SHOUT award 2009 for all of the work she did to raise awareness of organ donation, yay! :D

This morning I was going to go and visit my nan with my dad, but decided against it when we found out that my nan wasn't feeling very well. She said on the phone to my dad that she kept feeling dizzy and nauseus. She wasn't sure why so will contact the doctor tomorrow. But I don't want to risk catching anything, so dad went to see her on his own. This morning I helped my mum clean our village library instead as I needed a change of scene because I'd not been out of the house since Mon. And then we baked some ginger biscuits, yummy! :)

This afternoon/evening my friend Claire came round and we had a lovely time :) It was about a fortnight since I'd seen her so we had loads of catching up to do. And dad cooked a lovely meal of roast chicken for tea :) Claire reminded me that VAT is rising on the 1st Jan, so that might scupper my plans of getting a laptop in the January sales. So I was surfing the Internet looking at laptops to potentially buy before the Jan sales and I found the perfect one. So I bought it :D I have ordered this, but mine will come with Windows 7 and I paid a little extra (just £5 for a better battery). And I've got free delivery on it :) The real reason I decided on that laptop is because it's available in purple, so Claire offered to pay the extra money for me to have a purple one for my Christmas present. So my laptop will actually look like this :D :D :D Mine will be built to order and so I checked the website for my estimated delivery date. It said Dec 14th, but I'm willing it to come a little bit early, because I'm going into hospital from Dec 13th to 15th, but the hotel I'm staying in has wireless broadband, so I'd love to be able to take it with me :D My current laptop would probably fall apart if I took it with me as it still has cable ties holding the screen together :P

I've not watched any full length DVDs this week, but did finish off watching series 2 of Absolutely Fabulous :)

I didn't think I'd watched much TV because of my headache, but I've got quite a list :P Since my last update I've watched:

• Film 2009 - Me and dad might be going to see Paranormal Activity on Tue night. I'm not sure why I'm so keen to see it though, as I usually hate horror films! :P
  
• The Restaurant - How are the blonde boys still in when one can't even cook!?
• Jess: Britain's Youngest Sleepwalker?
• My Shocking Story: Burnt and Survived - I was bored!
• Megan: Let Me Grow Up
• The Killers Live From The Royal Albert Hall - I was channel flicking late one night and caught it on one of the music channels :) I've only watched the first 10mins so far though, I had to record the rest because my headache was very painful. Looking forward to watching the rest :D
• GMTV - For a Will Young interview and performances for Mum.
• 4music Introduces Erik Hassle - We'd seen him supporting Little Boots and now he's on TV! I still don't like his music though! :P
• 4music World's Greatest Popstars - my favourite Pink came 4th out of the 10 contenders, then I turned it off because I couldn't care less whether Eminem, Britney or Beyonce was number 1!
• 2 episodes of Live From Abbey Road - one episode featured Seal and one featured Yusuf Islam (formerly Cat Stevens)
• X Factor and X Factor results show - I think the right person went out :) Joe to win :D I thought Alicia Keys was very good last night too.
  

I thought I'd mentioned how much I loved Pixie Lott's music before, but an email from Emma today made me think that maybe I hadn't. Sorry if I'm repeating myself. I love Pixie Lott's 3 released singles and have been wanting to buy her album (Turn It Up) for ages. But I've been persuading myself to wait til it drops in price. So I was very happy when I downloaded Spotify last week and found that Turn It Up was available to listen to on there. I've been listening to it again and again since then and listened to it 5 times in just one day :P I think she's got a great voice and don't dislike a single song on her album :D I think my favourite song is currently Band Aid. I will still buy her album on CD, probably before I go into hospital next month, so I can listen to it on my iPod :) I'd love to see her live when she tours.

Yesterday I saw Cheryl Cole's new video for her next single '3 Words' for the first time. I thought that the video was awful and didn't like the song either, it just doesn't get going. You can see it here. What do you think?

I taught Dad how to use Spotify on Friday and am already regretting it! His taste in music is not like mine, he listens to artists like Leonard Coen whose music I find really depressing. My dad will be 60 on Thursday - that seems really old! :P Dad can't wait to get his free bus pass, discount at the cinema, free swimming sessions etc. though.

Music, tummy aches and media

This is an odd update made up of lots of bits and pieces, so I'm sorry if it doesn't flow very well.

On TV since my last update I stumbled across Pink's Funhouse concert again and watched it, despite already having seen it twice recently and having the DVD :) And I watched an interesting Wonderland documentary about a couple with Downs Syndrome on iPlayer. I've also watched a couple of episodes of Absolutely Fabulous on the DVD of series 2 that I've currently borrowed from the library. Yesterday I went to request series 3 on DVD to discover that the library don't have it, despite having series 1,2,4 and 5, lol :P So I've added it to my Tesco DVD rental list at high priority, so hopefully I'll get series 3 soon as I'll finish series 2 within the next few days. I watched one of the DVDs I'd rented the other day, a very funny Christmas film called Elf. I'd definitely recommend it :) And I caught the end of a Hollyoaks music programme on C4 where Pixie Lott was performing. At the bottom of the screen facts about Pixie Lott were scrolling across and one said that 2 years ago she was a dancer in Mika's Love Today video! So I had to have a watch of that video (which is on one of my Mika DVDs) to see if I could spot her, but I couldn't. I'd give you a Youtube link so you could have a look, but unfortunately all the Youtube Love Today videos are really poor quality, so you'd never be able to spot her.

I used iPlayer to listen to an interview with Diana Vickers (my favourite from last year's X Factor and who I saw in The Rise and Fall Little Voice last month). And I read a good article about Mika in Monday's Independent newspaper, but it's not available on their website. I also found this link to download the audio files of all of my current X Factor favourite's (Joe) performances from the live shows, so have put them onto my iPod :) And I used an offer in this week's Radio Times to download a free Doctor Who episode from iTunes this evening. If you're interested, click here and then when iTunes loads click on the free link in the top right hand corner :) It took me ages to download on my dying laptop though as it insisted that I downloaded and installed the most recent version of iTunes first (which took ages), before downloading the episode and transferring it to my iPod (which also took ages). The whole thing took about 2 hours!

I've been using Spotify lots, I love it :D I've listened to Pixie Lott's album countless times, I think it's great. Has anyone else got/listened to her album? I've also listened to Alexandra Burke's album and Shakira's latest album which were both a bit disappointing, so I'm glad I didn't buy them. I also set Spotify up on the downstairs computer so mum could listen to The Noisettes' latest album, Lily Allen's second album (which is hilarious when they bleep out all the swear words) and then her special request - Elvis Costello! My laptop speakers are rubbish, so I listen to music through my stereo when I can, but I can't do that with music on Spotify. My stereo is nowhere near my desk, so using my stereo speakers for my laptop music wasn't a very practical idea. Luckily though my dad lent me some small-ish, but decent speakers that he doesn't use, so I've fixed them up to my laptop and they're a huge improvement :) And Dad said if I like them then I can have them for Christmas :D

Me and mum have bought some more concert tickets :D The only concert we'd got lined up was Mika in February, but on Tuesday we bought tickets to see The Noisettes (who mum loves and I quite like) in concert in Feb too :D Yay, looking forward to both of those concerts, just hope that I cope ok as they're only 5 days apart!

I mentioned a little while ago that I was attempting to read a book called Coraline, my first book in a while. I've not got any further with it since then, but will definitely have another go with it soon.

My mum has a friend who is a nanny and she used to look after Michael Bond's (the author of the Paddington Bear books) grandchildren I think. And she's still in touch with the family. Mum asked if she could get us some books signed, so me, mum and Alf now each have a signed Paddington Bear book :D And mum also got one signed for Lizzy's daughter, M :)

Mum made me laugh on Tuesday when I asked her if she knew how long it was til Christmas. Mum said "3 weeks and 10 days", lol! :P She has dyscalculia (number dyslexia) so I know I shouldn't laugh, but when mum eventually realised what she'd said we both found it funny :D

My tummy aches have been quite bad on a few occassions recently and I'm getting fed up of them, so I'm going to have another go at trying to work out what food(s) is triggering them. I suspect it might be rice, so I'm going to try not eating that for a while and I'll see if that makes a difference. If avoiding rice doesn't help then I'll try not eating white bread next as mum thought that might be a trigger. I'm a bit nervous about excluding foods from my diet because I don't eat a huge variety of foods, but hopefully I wont lose any weight while doing this.

Earlier this week I received a letter about my first Pathways to Work interview which is on Jan 6th. This is the path I'll go down if the outcome of my ESA medical assessment (which is next Wed, eeek!) goes one way. Hopefully I'll find out the result of my ESA medical assessment sometime in Dec, so I'll know whether I need to go to the interview in Jan or not.

On Tuesday I felt better than I expected after Mon, just a bit tired. I've felt awful today though :( But I did expect that after such a busy and tiring day on Monday. Hopefully I'll soon start to feel a bit better. I don't have any plans til Sun, so can just relax :) As you'll probably notice from the time of this post, I'm very nocturnal tonight, lol :P I really ought to try to get that sorted again ASAP.

I mentioned in this blog update that K isn't doing so well at the moment. A few days ago I heard that another little girl I know in the transplant community is currently very ill. M is 4 and I met her in Hospital B after my transplant when she was in for her assessment (also for a small bowel and liver transplant). She received her transplant relatively quickly, recovered really well and had been doing fantastically. Then suddenly and very unexpectedly last week she developed moderate to severe rejection and is currently very ill in Hospital B. I've spoken to her mum and she knows that M's recovery will take a while, so I'll catch up with them when I'm in for my annual tests in a few weeks.

Sarah, who did the Gifts of Life photography project, is running LLTGL's Christmas Media campaign. She has asked if I'd like my story to be used and I said I'd have a think and get back to her. But I don't know what to do. I've always said no to publicity before because I'm quite a private person and I'd be worried that my story could be twisted or spread without my permission (although I do know that LLGTL have lots of experience). And I think I'd be ok with doing just one thing, but know that one thing often leads to many more. And mum thinks it might cause me stress and worry at the moment, and my health isn't great. BUT it might encourage more organ donors.

London! :D And weight

Yesterday me and my mum headed to London at about midday. It's just less than an hour on the train, so isn't too far. We spent the afternoon browsing round Harrods which was fun. I only bought one little Christmas present for a friend though as most of their stock is much too expensive for me! Mum bought a very pretty little Christmas tree decoration too. And we had some very expensive drinks (£3.95 for a coffee and £2 for a glass of milk!) in a cafe there. Mum made one of the doormen laugh when she asked what he would recommend looking at, but said she wasn't interested in posh bags or dresses. Then she said that what she most wanted was a cup of tea :D

When we'd finished at Harrods we headed to Wembley Arena. As we entered the arena we had to have our bags searched. The man who searched my bag told me I needed to take the lid off my bottle of water. I expected him to ask me to have a sip to prove that it was only water, but he confiscated my lid!!! Mum explained to him that I needed the lid back as it was sterile water and he eventually said he'd make an exception for me and handed the lid back, but not before he'd been turning it round and round in his grubby hands, yuk! We arrived there a bit early so sat in the cafe for a while and I also bought some merchandise. I bought a big programme full of photos and a tour t-shirt. I wasn't impressed that they charged for debit card transactions though, but as I didn't have any cash with me I had to pay an extra £3 (it was £1.50 per transaction and stupidly I didn't buy both my things together). And when I wanted to go to the toilet I had to join the longest toilet queue I'd ever seen! But queueing for the toilet wasn't too boring as there was a Band Hero game set up nearby so I could listen and laugh at the people attempting Taylor Swift karaoke!

The doors to the seating opened about 1 hour before the concert started, so we made our way in to find our seats. We had seats in quite a good position - if you click here to view the seating chart, we were in block N11 about 2/3 of the way back. Our view would have been brilliant if we didn't have 4 'gorilla' boys as my mum called them, directly in our line of vision. They were in the row in front of us and along a little bit, so in our view of the stage. They were all over 6ft tall! And me and my mum are both just 5ft 4"! We had seats, but I had to stand for most of it (which hurt) as the gorilla boys were standing, so if I sat down I couldn't see a thing. Mum asked them to sit down so I could see and that lasted for 1/2 a song! And even standing I struggled a bit to to try to see between/around them. Then behind us there were some young girls with really high pitched screams and to the right of us there were 2 older girls who had a bit too much to drink! The arena was completely sold out and the crowd was amazing. Taylor Swift was so shocked when for about 5mins solid the whole arena was cheering, clapping and stamping their feet for her!

During Taylor Swift's introduction part my Mum got very excited and somehow managed to flick her glasses off, lol! It was dark, so we had to get everyone seated around us to look for her glasses. They were found quite quickly though so then we could go back to watching the concert :D

The support act was an American boy called Justin Bieber. He looked about 11, but apparently he was 15. He wasn't bad at all, but not really my kind of music. He only did about 4/5 songs though. And near the end of his set he fell over something on stage and broke his foot! I'd never heard of him before, but lots of the crowd seemed to have.

Then Taylor Swift came on and she must have been on stage for almost 2 hours. She was really good :D She performed 16 songs - 10 out of 13 tracks from Fearless (she didn't do Breathe, which I don't really like, but also didn't do The Best Day or Change, which are two of my three favourite tracks from Fearless), 5 tracks from Taylor Swift (Tim McGraw, Teardrops on my Guitar, Picture to Burn, Our Song and Should've Said No) and a Justin Timberlake cover too.

The set was clever as it created lots of different scenes for her different songs and turrets even popped up to turn it into a castle for 'Love Story'! And they had rain coming down from the ceiling for her to dance in during the finale. The back of the set was a screen that they used to show different things for each song. And there was a video screen on one side of the stage too which showed a close up of the action on stage. As well as singing Taylor played the guitar and the piano too. And at one point she walked through some of the audience, but that was down on the ground, so nowhere near me. She also performed a few songs on a little stage that popped out of the floor in the the middle of the audience! She did a few costume changes including one on stage in about 10secs, I have no idea how she did that! You can read a bit about her concert and see some photos of her costumes here. And you can see some more photos if you scroll down to the bottom of this page.

The journey home was relatively uneventful, apart from our tube being held up at the station for a bit due to signaling problems, and we got home at 12.30am. Me and mum have been talking about the concert since as we both really enjoyed it. Mum did say that she wished she'd listened to Taylor Swift's albums a bit more before the concert though as she only knew 2 songs! She couldn't believe I knew all of them ;)

I'm not feeling as bad as I expected today, just tired. I expect it'll hit me later or tomorrow though! So I've just been relaxing today. I've watched some of Taylor Swift's DVD from Fearless: Platinum edition, watched the music channels a bit (and was shocked by Lady GaGa's videos still getting even odder - what is the video to Bad Romance about?!) and listened to some music on Spotify.

This morning I weighed myself and my weight was up a little bit on last week (51.1kg compared to last week's 50.9kg) and that was after a night off feed! So I've emailed my dietician and am going to drop my feeds down to 3 nights this week :D

Off to London

I'm feeling ok today so am just about to head to London. We'll have a little wander before the concert tonight. I'm so excited :D :D :D

Short (hopefully) update

Last night I went to bed at 1.15am because I felt a bit nocturnal and so wrote my previous blog update. I woke up earlier than my alarm this morning, so got up at 9am. I've been very tired today though, more tired than yesterday. I was planning to browse round the local carboot sale this morning, but decided against it because I didn't have the energy. So my parents went and I just stayed home and had a shower and stuff instead. I'm glad I didn't go to the carboot sale though because my parents got caught in a downpour while they were out and had to get changed when they got back because they were so wet! Mum hadn't taken a coat with her :P They managed a quick look round the carboot sale in the rain though and because of the downpour, stall owners were almost giving things away, so they picked up a couple of great bargains including a kitchen knife for just 10p and a DVD for me for just 50p :D

I've watched lots of TV today because I've been so tired. I watched a programme about Pink on C4 this morning (but the presenter really annoyed me), an interview with Taylor Swift on Something for the Weekend, The Restaurant which I recorded from last Thur and I attempted to watch a Horizon programme all about talking and language on iPlayer, but just couldn't concentrate on it so had to give up. And I also used iPlayer to listen to Pixie Lott on the Radio 1's Live Lounge from Thur :) I also watched the X Factor and most of the Xtra Factor tonight - I'm so glad that the twins are out at last! I wasn't very impressed with the performances tonight though - I'm not keen on Susan Boyle and I can't stand Mariah Carey!

I've wanted to use Spotify for a while, but was really disappointed that I'd missed the free sign up period and that now you need an invite from someone who pays for it to get a free account. But tonight on one of the ME forums I use, someone told me how to get around that and get Spotify without an invite. If anyone is interested, just click here. So I signed up and downloaded Spotify and I love it :D Now I just need some decent speakers for my laptop and then I'm sorted! Because you can only access music from Spotify on your computer, I'll still buy CDs so I can put them on my iPod, but I'm hoping now I'll be able to wait til they drop in price as I'll be able to listen to them on Spotify in the meantime. The first thing I used Spotify for was to listen to Pixie Lott's album and it's brilliant :D But I'm not in such a rush to buy it now I can listen to it on my laptop :)

My dad looked at my bedside lamp today and he managed to mend the broken fuse which had stopped it working, but somehow in the process he made it so that the lamp works, but wont turn on or off, lol :P So I'll have to have a look for a new one.

As I've mentioned before I've just started writing to my new AYME buddy who is called Katie. Last week I wrote to her mum asking for advice on what to buy Katie for Christmas as I want to get her a little something, but as I've never been severely affected by ME myself I didn't want to buy her something that she couldn't use. Today I received a lovely email in response from her younger sister and now I've got some good ideas about what to get her for Christmas :)

Today I heard from K's mum. I've not mentioned K for a while, but she's a little girl I met in hospital who had a transplant like mine. K is 5 and has been having lots of health problems this last year which mean she'll probably need a second transplant. And she had very severe swine flu a few months ago. I'd not heard from K's mum for a month or two, but contacted her today. K is still in hospital and not doing very well. And K's mum and dad have just split up :(

Today me and mum have been planning tomorrow. I've been quite worried that I might not be well enough to go, but I'm going to make every effort to get to the concert tomorrow as I really don't want to miss it. Hopefully I'll feel a bit better tomorrow morning than I have done today, fingers crossed. If I'm feeling well then we're probably going to go to Harrods first then go on to the concert. If I'm not feeling so well then we'll just go to the concert. I've not really allowed myself to get excited today, but if I wake up tomorrow morning feeling ok, then I'll get excited. I'll try to update tomorrow to let you know whether I've made it out or not.

All About Me

I've stolen this from Emma, thanks ;)

Vital Statistics:
Me: Molly
Place of Birth: Hospital H, my local
Zodiac Sign: Virgo
Male or Female: Female
Occupation: Nothing at the moment - ME sufferer I guess :P
Residence: England

Appearance:
Hair Colour: Brown
Hair Length: Shoulder length
Eye Colour: Brown
Best Feature: Probably my big eyes, but they're hidden away behind my glasses
Height: 5ft 4" - wish I was taller
Braces?: Yup
Glasses?: Yup, have been wearing glasses since I was 3
Piercings: Just one in each ear
Tattoos: No, but I want one. Don't know if I'm brave enough though
Righty or Lefty: Righty, but I do play cards left handedly :P

Your Firsts:
First Award: Probably for completing one of the library summer reading schemes when I was little or maybe one from school.
First Sport You Joined: I've never been part of any sports teams. But I had swimming lessons when I was about 10 and have always enjoyed swimming for fun, but never competitively. And I've done a few week long courses in table tennis and trampolining during school holidays.
First Holiday: We used to go to Cornwall every year :)
First Book you Read: I've always been surrounded by books, but my very first one was a bath book called Sammy The Seal. My Dad used to read it to me and I'd finish the sentences for him :P

Favourites:
Colours: Purple and dark blue
Song: Affirmation by Savage Garden (my regular blog readers will be shocked that it's not a Mika song!)
Candy: I don't like sweets or chocolate
Restaurant: I like Japanese ones, such as Wagamama and Yo Sushi, but don't eat out very often
Store: Ooh that's hard. HMV probably. I also like GAME and New Look :)
Book: Before I Die by Jenny Downham
Magazine: Official Nintendo Magazine and Focus
Shoes: Comfy, sensible, practical ones. I only have 2 pairs of shoes - a black lace up pair that I wear most of the time and a black slip on pair. I'd quite like some boots though.

Currently:
Feeling: Fed up
Single or Taken: Single unfortunately
Eating: Nothing
Typing: This
Online: Yup
Listening To: Radio 1's Chart Show - currently Meet Me Halfway by the Black Eyed Peas :)
Thinking About: Who will be number one in the chart, watching X Factor later and worrying whether I'll feel well enough to go and see Taylor Swift in concert tomorrow
Wanting: To feel better
Watching: My laptop screen which is tied together with green cable ties at the moment! :P
Wearing: Very cosy boot-like slippers and leggings under my jeans for warmth. Then on top I'm wearing a vest, a black poloneck, a t-shirt with a realistic looking wolf on it and then a zip up jacket thing on top. I'm always cold!

Future:
Want Children: Definitely
Want to be Married: Not bothered. I'd like to be in a long term relationship with someone I love, but I don't mind if we're married or not.
Careers in Mind: Maybe journalism or working with children
Where Do You Want to Live: Definitely in London :D I love the way there is always something happening in London :D

Have You Ever:
Smoked: Nope and I never will, I know how easily people can get addicted
Ran Away From Home: No
Broken a Bone: My chest bone was purposely broken when I had open heart surgery at 2 and a half. And I might or might not have broken my little finger when Alf sat on it and bent it right back when I was about 8.
Got an X-Ray: Hundreds!
Cried when Someone Died: Yup
Cried at School: Yes

Do You Believe In:
God: Nope
Miracles: Yes, I think so
Love at First Sight: Don't know
Ghosts: Definitely not
Soul Mates: Yes
Heaven: Don't know. I don't believe in God, but kind of want to make myself believe in Heaven
Hell: No
Yourself: Definitely

Children In Need, shopping and Nan

I've left it a little bit longer than I intended to leave it between updates, but it's not too long since I last updated, so hopefully this post won't be ridiculously long. We'll see :P

I'm attempting to read a book at the moment which is something I've not done for a while because of the trouble I have concentrating. I was chatting to a friend about one of my favourite films, Coraline, and she reminded me that it was based on a book. So I requested the book from the library to read. I'm not getting on brilliantly with it though - it's only a short children's book, but so far I've read less than half of it and that was in 2 sittings, so when I put it down and then picked it up again I found I'd forgotten what had happened so far, lol. I do wish I could read novels like I used to. I've also managed to read some of my latest Focus magazine, which is quite tricky reading.

My new Wii game (New Super Mario Bros Wii) arrived in the post on Thur. It's a great game, but I'm finding it very hard and so very frustrating at the moment. I've read reviews of it and they say it doesn't get difficult til later in the game, so I know it's me not the game, and that's annoying. I will keep persevering though when I've got enough patience. I've only played the single player mode so far, so am looking forward to trying out the multiplayer mode :) Both modes have the same levels though, so I know that wont be any easier.

Again I've not watched any full length DVDs since my update, but need to get watching them again because I've got 4 Christmassy ones rented at the moment (I normally only get 2 at a time, but have some bonus ones at the mo to make up for the ones I missed with the postal strikes). I did watch an episode of Absolutely Fabulous though :)

On TV since my last update I've watched some more musical things. I can't remember what it was called, but I recorded a programme on Channel 4 a few nights ago where Little Boots returned to her home town of Blackpool. That was a mixture of her talking and performing, so I enjoyed watching that. I also watched Little Boots being interviewed and performing on Loose Women. I watched the interview and performance Taylor Swift did on the Paul O'Grady show again because I had to show it to mum and I also saw her interviewed on This Morning. And I caught Pixie Lott performing on the Hollyoaks music show today.

Tonight of course I watched the X Factor. I thought Joe was brilliant and really hope he wins. I quite like Stacey too, but I don't care for the other 4 acts so got a bit bored during tonight's programme because I was only interested in 2 of 6 performances, hehe. I've just worked out that the winner will most probably be revealed on the 13th Dec, when I'm in hospital for my annual tests. But I'm staying in the hotel this time and I'm quite sure that the hotel room will have a TV, fingers crossed. I also watched the Xtra Factor tonight and was very pleased to hear that Little Boots (who was on their celebrity panel) also thinks that Joe is the best. Can't believe that she likes the twins though! I really hope that the twins go out tomorrow.

On Thur me and my parents really enjoyed watching Children In Need Rocks The Royal Albert Hall. I didn't like all of the performances (wasn't impressed at all by Leona Lewis), but loved Mika, Annie Lennox and Lily Allen :D I was impressed at how well Cheryl Cole did seeing as she wasn't miming! And the British Transplant Games got a mention :) Last night I enjoyed watching Children In Need. I think Peter Kay is a genius! I think I most enjoyed some of the music performances :)

I went to bed quite sensibly on Thur (I was in bed for midnight and asleep by 1am), but then stayed up til 2.15am last night to watch all of Children In Need! That probably wasn't sensible, particularly as I'd just about sorted my nocturnalism out, but never mind! :P I'm not going to try to get my bedtime earlier again yet because I know I'll have a late night on Mon. So I'm just going to go with it tonight and tomorrow night and then try to fix my nocturnalism again from Tue or Wed.

I'm really excited about Monday as I'm going to see Taylor Swift in concert at Wembley, yay! :D Me and mum are planning to go to London a bit earlier and visit a shopping arcade that my mum has discovered is the oldest in London or something like that and we might go to Harrods too (just to browse) if I feel up to it :) My copy of Taylor Swift's new CD - Fearless Platinum Edition - arrived in the post this morning. And it's brilliant - it includes 5 new tracks, 1 new version of a track and a DVD with music videos, behind the scenes of music videos, a documentary about behind the scenes of her tour and more! :D

I was planning to see my friend F tomorrow for a DVD day, but I've cancelled that so hopefully I'll be more likely to feel ok for Mon, fingers crossed. I've felt quite tired over the last few days, but that's because I've been overdoing it yet again! :P I was still tired on Thur from a busy day on Tue, but felt better yesterday so went out. Me and mum didn't go to the city we usually go to, but went to another equally local city to do some shopping :D I had a nice, but tiring, day and my feet hurt at the end of it! I bought a birthday card for dad because it's his birthday on Dec 3rd, 4 CDs at bargain prices in a charity shop, a fantastic pair of blue earrings that look like zipper pulls and this small portable iPod speaker that looks like a lego brick :D I guess after shopping yesterday and then having a late night last night it's no surprise that I've felt very tired today :P

I did manage to go with my parents to visit my Nan today though :) As I said in a previous update, she had a fall almost a week ago and bumped her head and broke her wrist. She's got carers visiting her at home 4 times a day at the moment, so doesn't have to stay in hospital which is great. She's got poor mobility (she broke her leg badly a few years ago and it didn't mend properly because she's got osteoporosis), so relies on a walking frame to get around her home. But she's struggling to use her walking frame with a broken wrist, so she's finding moving around very difficult at the moment. Hopefully as her wrist heals though she'll be able to use her walking frame more easily again. Lots of her relatives live locally so they've all been visiting her to help her out and keep her spirits up. We cheered her up today and mum got some shopping in for her. We'd not seen her since her (86th!) birthday on the 9th, so took over all her presents today too.

This evening I came to put my NG tube in and discovered that I'd run out of my preferred tape (the one that sometimes falls off). I'd ordered some from the surgery a week or so ago, but forgot to collect it, whoops. I'm shifting my days off feed around a little this week so I can have Mon night off, so needed to come up with an alternative tape plan for tonight and tomorrow night. I found a small amount of my preferred tape cut up into pieces for spares and kept by my bed, but not enough for 2 nights. So I've used the original quite sticky tape (Mefix) tonight, but know it wont want to come off easily in the morn and will probably leave my cheek red tomorrow. But at least I've got some of my preferred tape left for Sun night so my cheek wont be red for going out on Mon. And I'll pick up some new tape from the surgery in time for Tue night.

I received an email from my dietician on Fri. I only need to have a high calorie drink on the days after I've had a night off feed. But she didn't answer my question about when to reduce my feeds to just 3 nights a week. I managed a high calorie drink diluted and drunk more slowly on Thur and today and they didn't upset my tummy at all. So if my weight is ok on Tue I'll then reduce my feed to just 3 nights a week :) I don't think I'll be off feeds by Christmas, but I'll need to ask my dietician what she thinks. That was the original plan though, but if that's not going to happen I'm happy to stay on them for a little bit longer - maybe til sometime in Jan. I don't want to reduce them too quickly because if I do that I might lose some weight and if so I could end up having to be on the feeds for longer.

Yesterday my bedside lamp broke :( I really liked it because it was a touch lamp (so easy to turn on in the night for finding my way to the toilet) and had 3 brightnesses so didn't wake me up too much if I needed to put it on in the night. And it was lilac so matched the walls in my room. Dad will try to fix it, so I've got my fingers crossed that it's a mendable fault. But if he can't fix it then I'll be hunting for a new one.

This evening I was writing a long email on Facebook and somehow I must have clicked something which made my whole email just disappear. I was so frustrated. So I had to rewrite it all, grrrr.

I've just realised I don't have a Blogger profile photo, so will have to see if I can remember to sort that out :)

My 3 year transplant anniversary

Today marks 3 years since I received my transplant. 3 years ago I was in theatre about 1/2 way through my 12 hour transplant operation. So much has happened in 3 years, so in some ways it seems like a lot longer since my transplant, but also in some ways it feels like less than 3 years.

In the last 3 years I've:

• got my life back and been able to plan for my future
• gained independence and had to worry a lot less
  
• passed my GCSEs and completed a sixth form course
• become free of IV lines
• gained and then lost an illeostomy
• gone from TPN onto enteral feeds and then got off enteral feeds completely (but am back on temporarily at the moment)
• learnt to eat and built up my eating to reach an almost normal level of eating
• got my social life back
• travelled to Florida and Japan
• had energy and been able to go out again (temporarily on hold at the moment due to ME though)
• watched Lizzy's daughter M grow up. She was a just a baby of 6 months old when I had my transplant, now she's 3 and a half.
  
• done lots to promote organ donation
• met some amazing people in the transplant community
  
• enjoyed my life :D

As I've said previously I don't feel comfortable celebrating my transplant anniversary, so have just been having a thoughtful day today. I'm feeling very mixed emotions and have been thinking of my amazing donor family more than myself so far. I'm in touch with my donor's 2 sisters (J and C) via email, so emailed them both earlier letting them know they were in my thoughts today. I've not heard back from J yet, but C sent a lovely little reply within just a couple of minutes. And she said that she had passed my message onto her parents. I'm so grateful for my gift of life and words will never be enough to express how I feel.

Weight, a busy day and then paying for it the next day!

My weight was up a little bit to 50.9kg yesterday :D I emailed my dietician yesterday morning with my weight and my concerns about the high calorie drinks and she replied last night. Apparently lots of post transplant patients also have trouble with the high calorie drinks, so it's good to know I'm not alone. It's odd that I used to manage them fine though! My dietician suggested trying them diluted half and half with normal cow's milk and drinking them more slowly, over 30 to 45mins. So I'll give that a try. I'm not sure whether she wants me to have one a day or just on the mornings after I'm off feed though, so I emailed her back to check that, but haven't had a response yet. She said that if I can manage the drinks then I can reduce my feeds to just 3 nights a week, but I don't know whether she means to reduce them now or trial the drinks first. So I also asked that in my response email. I'll let you know when I hear.

After my swine flu jab on Mon eve, my arm was really sore that night and yesterday when I moved my arm at all. Luckily Paracetamol eased it a bit. And it's just been a bit achy today, but I've not needed any Paracetamol for it. I'm not really looking forward to my second one, but at least I'll known that the sore arm wont last long. Mum and Dad's arms haven't been nearly as sore as mine!

Because of my sore arm and overheating under new thick duvet I didn't sleep well on Mon night. But last night I got to sleep before midnight (which is early for me) and slept really well :)

I felt fine yesterday, but had quite a busy day which is probably why I've felt so exhausted today. Yesterday afternoon I attended an appointment at the job centre in town as I'd recieved a letter saying I needed to go to continue receiving my benefit. And the appointment wasn't too bad. What happens next depends on how my ESA medical assessment goes at the beginning of Dec and which of the 2 groups (employment or support) they decide I should go in. If I'm put into the support group then I'll just get my benefit, but if they think I'm well enough to go into the employment group then I'll have to attend 5 Pathways To Work appointments to see what kind of work I would be able to manage. My first Pathways To Work appointment is due in a month but I might not have heard the decision on my ESA medical assessment by then, so I might have to start the Pathways To Work appointments in case I'm put into the employment group. So yesterday's appointment at the job centre was just filling in a referral form to the Pathways To Work in case I'm put into the employment group after my ESA medical assessment. With the advisor I just had to go through how my ME and transplant affect me in everyday life and how they would affect me if I was at work. And what kind of work I might be interested in. I don't think I'm well enough to work at the moment (unless it was very part time and could be done at home via my laptop) but if I'm put in the employment group then I'll have to see what they say. I'll keep you updated.

After that yesterday I went round town (but only bought a Radio Times) and then on the way home called in at the local garden centre with mum (where I bought a couple of small Christmas gifts for friends). Then yesterday evening me and mum went to the cinema to see Disney's A Christmas Carol in 3D which was very good :D

Today I was supposed to be going into the city to meet a friend, H, but had to cancel because I just felt exhausted and had no energy when I woke up this morning :( We'll definitely rearrange though and H is going to see if her and her mum could come to our house, as that'd be easier for me if I was having a not so good day. H's mum is good friends with my mum, so hopefully that'll work. Today I just relaxed at home and am feeling a bit better this evening.

I received some good post yesterday - as well as a rental DVD and some info on what to expect from my upcoming ESA medical assessment, I also got a lovely letter from Lizzy's husband's niece, Mawite, who lives in Burma :D She's 17 and has very good English. I sent her a letter a couple of months go, so it was lovely to receive a response. I'll reply to her soon.

I also received another nice piece of post yesterday. A couple of months ago I received an email from Emily about Jess and her urgent need for a transplant. So I forwarded Emily's email (plus a few words of my own) onto all my email contacts. I got a few responses from people I emailed it to including one from a lovely lady I used to know when I went to church (I used to go with Lizzy because her and her family went, I don't think I've ever actually believed in God and am now definitely an Atheist). She knew about my transplant and asked if she could use part of my email in the church's monthly newsletter to promote organ donation. I said of course. So in the post she sent me a copy of the newsletter with the article in and a little note. I'm hoping that will have encouraged some more people to join the organ donor register :) I sent her a reply via email today to say thanks.

I'm quite private about my transplant and usually wait til I know people well before telling them. But I'm now making an effort to be more open if it might encourage more organ donors. So yesterday I revealed that I'd had a transplant on the AYME forums because there was a discussion about organ donation going on. I got some lovely responses :) I'm not feeling ready to go to the media with my story yet, but might do in the future. Tomorrow will be my 3 year transplant anniversary, but I'll probably blog more about that tomorrow.

I think I said in a previous blog post that at the weekend I sent my first letter to my new AYME buddy, a girl called Katie who is severerly affected by ME. I want to buy her a little something for Christmas, but because I've never been severely affected by ME I'm not sure what would be appropriate and the last thing I want to do is give her something she's not going to be able to use. So today I wrote a letter to her mum asking for her advice because she'll know Katie best. I'll post that off tomorrow and hopefully her mum will get back to me with some guidance.

Over the last couple of days my concentration hasn't been very good, so I'm getting through my Official Nintendo Magazine (which came on Mon I think) more slowly than usual. I received my other monthly magazine, Focus, today, but haven't even attempted reading that yet as it's a more difficult read. And I've flicked through the Which magazine that mum brought back from the library on Tue too.

The DVD of the second series of Absolutely Fabulous which I'd requested came into the library on Tue, so I enjoyed watching an episode of that today :)

I've watched a lot on TV again, but not many whole problems, more just the interesting bits of long or boring programmes! :P I can't remember which day it was, but earlier this week a friend in the transplant community said on Facebook that her daughter (who has had a heart transplant) would be on Jeremy Kyle that day. I can't stand Jeremy Kyle and think his programme is awful, but recorded this specific programme about inspirational children and then just watched the feature with the girl I know in :) I recorded and then skimmed through Film 2009 for the interesting bits and also recorded and skimmed through Graham Norton because I wasn't interested in 2 of his guests (and don't like him), but wanted to see Dawn French because I think she's great :D I've got sucked into I'm A Celeb despite saying I wasn't going too, so I've been watching that each night :P

And there have been loads of good music things on TV too over the last couple of days. I've seen Mika performing his new single 'Rain' on GMTV and being interviewed on BBC Breakfast, Pixie Lott performing her new single 'Cry Me Out' and being interviewed on This Morning, Little Boots performing her new single 'Earthquake' on GMTV and Taylor Swift performing her new single '15' and being interviewed on the Paul O'Grady show! :D All these great singles are being released this week or next week, but I think it's sad that none of them will stand a chance in the charts because 'You Are Not Alone' by the X Factor Finalists is without a doubt going to shoot to the top of the singles chart and stay there for weeks. I know it's a charity single which is great and I'll be buying it myself and I do watch the X Factor, but I just think it's bad that the X Factor is now so powerful that no other artists stand a chance.

Taylor Swift was promoting her new single and rerelease of her latest album (called Fearless Platinum Edition) on the Paul O'Grady Show today. Last time I looked for Fearless Platinum Edition on the Internet it was only released in America and sourcing a copy from there would cost too much money, but today when I looked I discovered that it has now been released here in the UK. I have the original Fearless album, but the Platinum Edition has 6 new tracks plus a bonus DVD featuring music videos and behind the scenes tour footage, so I just had to buy it! I'd been doing so well with resisting buying things, but couldn't resist this :P Because it's such a new release it cost me £12.99 though, plus postage to ensure that I receive it before the concert as I'd love a chance to listen to it before then incase she performs any new songs :D Yay, can't believe it's just 5 days til I see Taylor Swift at Wembley. I can't wait :D Roll on Monday!!!

A new Wii game (called New Super Mario Bros Wii), which I preordered a few months ago was dispatched to me today so I'll get it for release day (Fri). I've got my fingers crossed that it'll arrive tomorrow though ;) The downside of a fantastic new Wii game though is that it has cost me £35! Eeek!

Bedtime, swine flu jab and my Nan

I'm making an effort to do more frequent shorter updates, but I'm not sure how long it'll last :P

After my 3am night a few days ago I've been making a big effort to get to bed earlier. On Saturday I got into bed at 12.30am and was asleep by 1am. Then last night I was in bed by midnight and asleep 12.30pm! That's early for me and I'm going to try to get to sleep a bit earlier again tonight and then see if I can maintain it. I've not managed to get up any earlier yet - I've still been getting up between 10am and 10.30am even though I've got to bed earlier. So I'll see how that goes.

The new tape for my NG tube proved no good when I tried it on Sat night. It stuck really well, but was very difficult to get off the following morning. And then I had a red cheek all day :( So I'm back to the tape that falls off for now. I had trouble getting it to stick tonight, but I got there eventually. Fingers crossed it stays on overnight. Hopefully I won't need to struggle with tape for much longer now I'm reducing my overnight feeds. I've struggled a bit with eating over the last few days because my appetite seems to have decreased. But I'm really trying to sustain my eating and managed 3 mini croissants and a drink of milk for breakfast this morning instead of a high calorie drink. I'll see what my weight is in the morning, fingers crossed.

I had my first swine flu jab this evening. It went ok, but my arm is aching already just a couple of hours later. I've been warned that it will be very very achy :( Hopefully not for too long though. Mum and Dad also had their jabs tonight and Alf will have his next Mon. Most people just need one swine flu jab, but because I'm immunosuppressed I need a second in 3 weeks time (7th Dec).

Yesterday I completed and posted off my first letter to my AYME buddy, Katie :)

AYME has a regional co-ordinator for each area of the country to put local members in contact with each other and arrange meet-ups if they feel up to it. I recently discovered that there isn't a regional co-ordinator for my area, so I've volunteered to do it :) All the forms for a CRB check arrived in post this morning and I need to fill those out ASAP because as a regional co-ordinator I'll be handling AYME users' personal details.

This morning my dad heard from his sister that my Nan had a fall at her house yesterday. My aunt took her to A&E last night, but she's been back home today. She bumped her head and broke her wrist. The doctor thinks her wrist will just mend on it's own, but my Nan has got osteoporosis so her bones struggle to heal. She broke her leg badly 4 or 5 years ago and it didn't heal so she's lost a lot of mobility and so a lot of independence. And she also broke her fingers a few years ago and hasn't regained full use of them since. So I really hope that her wrist mends so she can regain full use of it again in the future. For now she's got carers visiting her at home four times a day so she doesn't have to go into hospital. I'm hoping to visit her later in the week.

Yesterday morning me and my parents went out to meet Claire at the local carboot sale. It wasn't raining, but the ground was very soggy! And I was cold despite wearing 6 layers and leggings under my jeans! I set myself a spend limit of £5, but spent £5.20 on the Nightmare Before Christmas DVD, Meet The Fockers DVD and About A Boy novel :) Then on the way home we called in at Dunelm Mills where I bought a heavy but warm much needed winter duvet and more Christmas wrapping paper.

On TV since my last update I've watched:

• The Restaurant - why are the blonde boys still in when the cook can't actually cook?!
• Doctor Who - which was more funny than scary and I thought it was a good but not great episode.
• X Factor - I wasn't impressed with the miming in the group songs, but I will be buying the fantastic charity single. I was frustrated that the twins escaped the bottom two and that Jamie went instead of Lloyd as Jamie had a much stronger voice and although he wasn't consistent, I really liked some of his performances.
  
• Xtra Factor.
• About 10mins of Girls Aloud: Tangled Up Tour until my concentration went.
  
• Gadget Show - which I only half watched as I thought it was a bit boring.
• I'm A Celeb - I decided I wasn't going to watch it, but was channel flicking tonight and got drawn into it! :P
  
• The music channels

I watched a lovely Christmas DVD called Miracle on 34th Street (the more modern version, not the original) this afternoon/evening which I really enjoyed :) And my Official Nintendo Magazine arrived in the post this morning, so I've been flicking through that today.

It's now 10.30pm and I think I've included everything I wanted to in this update, so will leave it here and try to get an early-ish night, fingers crossed.

Seeing the psychologist, an upset tummy and lots of phone calls

Since my last update I've been listening to Taylor Swift's music and starting to get excited about seeing her in concert a week on Monday :D I'm going with my mum though and she only knows the song Love Story, so I need to persuade her to listen to both of Taylor Swift's albums this week. I've also watched the music channels on the TV too.

As well as watching the music channels I also saw Little Boots performing Remedy on the end of the Hollyoaks music show on Channel 4 this morning. I've also watched Film 2009, the last 3 episodes of Collision (which me and my parents really enjoyed), a weird documentary called Octomum (about a woman in America who is mum to 14 children under the age of 9 including 9 month old octuplets!), The X Factor (go Joe and Stacey, boo to the twins) and the Xtra Factor.

On DVD I watched another episode from my Vicar of Dibley boxset. And I've watched 2 full length films - a Japanese anime called My Neighbour Totoro, which was nice and I enjoyed watching it but it wasn't anything special and Tim Burton's The The Nightmare Before Christmas. I'd wanted to see that film for ages and got it with my Tesco DVD rentals a couple of days ago :) Me and mum really enjoyed watching it and I'd highly recomend it. It was original, imaginative, funny and clever :D The extra features were also really interesting about how they created the stop motion animation. I've just heard that the Killers have a new DVD out, called Live From The Royal Albert Hall, and I really like the look of it as I've seen them live on TV and they were fantastic! I'd love to see them in concert :D Their new DVD is not available on Tesco DVD rental though, so I might have to buy it at somepoint. But not now because I'm trying to be careful with my money. I borrowed a book from the library this week called the Rough Guide to Chick Flicks, which gave me some ideas for a few more films to add to my rental list.

I'm really impressed with my DVD rental service. They asked how many DVDs I thought I'd missed because of the disruption the postal strikes caused and I said 3. So today 3 bonus DVDs (on top of the 2 I usually get at a time) arrived in the post to make up for the ones I'd missed :) Also in the post today I received a letter from Hospital B advising me to get the swine flu vaccination, but I've got that under control and will be getting the jab on Mon. And I received a letter asking me to phone up to make an appointment for my ESA medical assessment, so I did and have an appointment on December 2nd. Eek! I also arranged a physio appointment at Hospital A based on hospital B's referral, which will be on November 30th.

A few weeks ago I joined a scheme that AYME run where a member with mild or moderate ME writes regularly (every 2 or 3 weeks) to a member with severe ME without expecting replies. I received a letter yesterday saying I'd been matched to a severely affected member and have been given her details. So I've drafted my first letter, but haven't sent it yet.

Earlier in the week I received a phone call from Hosp B saying that my 3 monthly bloods that were due at the start of this month can be delayed til the middle of next month when I'm in for my tests. And I had a phone call from my dietician apologising for the confusion because she had forgotten that she had already asked me to reduce feeds the previous week, lol. So I'm on 4 nights a week still and we'll review it next Tue. My appetite has mostly been good, but today wasn't so good. Hopefully tomorrow will be better though. On Fri the rest of my family had sweet and sour chicken for tea, but I had pasta instead (even though I much prefer sweet and sour chicken) because the chicken wasn't free range. Mum usually buys free range chicken, but hadn't last week.

I had tummy aches as normal on Wed and Fri, but my tummy was a lot worse than usual on Thur and not so good again today. I had an upset tummy and so on Thur I was worried about having a possible tummy bug or rejection, but luckily I didn't have a temperature and my symptoms didn't last long. I would have assumed it was just something I'd eaten, but it happened again (although it wasn't so bad) today. I'm currently thinking that it might be connected with the high calorie drinks that I've just restarted taking in the morning after a night off feed. So I had one on Thur and today, but not Wed or Fri. I'll avoid high calorie drinks for a bit and see and mention it to my dietician too and see what she thinks.

I've also been quite tired this week, but that's becoming normal for me now. My nocturnalism was worse than usual last night, I was awake til 3am rather than my usual 1 or 2am. And the night before wasn't too good earlier, I got to sleep at about 2.30am. I really need to order the smaller dose Melatonin tablets to try.

Tonight I'm trying the new NG tube tape for the first time, so fingers crossed that it'll come off ok in the morning as it seems to be sticking well so far.

On Wed mum took me to Hosp B to see the psychologist, J. We got there earlier than my appointment, so went shopping in that city :D I was disappointed to find that one of my favourite shops, Freespirit, which sold clothes and accessories, had shut down :( I thought it was a one-off shop, but after looking them up on the Internet I discovered they have stores all over the country, but none near me. They've got an online store coming soon though :D I was looking for a new bag because my current one is sometimes too small, so as Freespirit had closed down I had to keep looking. I found a big shop that was made up of lots of smaller shop sections and in a fair trade shop there I found the perfect bag :D And mum bought some wool in the city too, surprise surprise! :P

My appointment with J went quite well. We only had just over an hour, so it was an introductory session really. J said she doesn't think she can cure my ME, but hopes to help me live with it. She asked about my current ME symptoms and my feelings about them and asked me to fill out a short questionnaire to see where I was to start with. I was surprised at how knowledgeable J seemed about ME. And then she introduced me to 2 processes - CBT (cognitive behavioural therapy) and something called ACT which stands for acceptance, committment and therapy. I think that I understand CBT, but don't really understand ACT. And CBT seems aimed at changing negative thought patterns, but I don't think my thoughts are particularly negative. We'll see though, I'll give it a try. She also mentioned the importance of pacing, which is something I know I should do, but don't do at the moment. Another thing she said was to have a schedule for each day and to stick exactly to it whether I feel rubbish or amazing. I understand the need to do less than I feel I can do on my good days, but can't see that pushing myself to do more than I can on my bad days is going to help my health. And a schedule just seems too rigid for my liking. She's not suggested starting that yet though, so I will have a chance to speak to her more about it. I've got to do some homework (listing my ME symptoms under the headings physical, emotional and cognitive, giving my thoughts when I get each symptom and then how those thoughts make me feel) which I've started but not finished, and then email it to her. We'll then communicate via email now she's introduced me to the concepts and we'll also make an appointment to meet again. I've emailed her to try to arrange a date for my next appointment, but I've not had a response yet.

R got home from hospital again on Thur, so hopefully she'll be able to remain at home for longer this time. She's had ME for longer than me, so has been really supportive to me about having ME. Recently R has developed gastro problems (which is why she's needed to stay in hospital), so I've now been able to use my experience to support her with that :)

My friend Emma from the transplant community hasn't been feeling very well for the last couple of days. She has recently got a new blog so hasn't got many followers yet. So it'd be lovely if you could have a read of Emma's blog here and send her some virtual hugs because she's in need of them right now. Thanks.

On Wed we got home to find that someone mum knows had left a big bag on our front bench full of clothes and some brand new make-up that her daughters didn't want any more. I wasn't interested in the make-up personally as I don't wear it, but am going to have a look at it and see if it's new enough to use as presents. Me and mum had a look at the clothes and found that they were my size :D Most of them weren't items of clothing I'd wear, but I did find a nice denim skirt that I can wear over my leggings and a very pretty black top that I could definitely wear to go out in. The rest of the clothes wouldn't fit my mum, so I've passed them on to my friend Claire.

Receiving the bag of clothes from someone my mum knows reminded me about a favour she'd asked me a while ago. Her niece's son is on TPN and her neice was interested in speaking to mum about her experiences. I'd told mum that I would send an email on her behalf, but hadn't got round to it. So I did that on Thur - once I'd cleared out my intray to find the original letter! In my email I said that I wasn't sure how much help me or my mum would be because I'm now off TPN and have been for nearly 3 years, but we'd both be willing to talk to her if she wanted to.

I heard on Thur that Sarah's Gifts of Life photography exhibition has had to be postponed. If they're talking about the exhibition now then I guess that means that my photos wont be taken and included :( Sarah never got back to me about it though. I'm quite upset about that as I really wanted to be part of such a special exhibition and notified Sarah very early on, but my photo shoot was cancelled twice (both times by Sarah) and then not rearranged in time :(

Every year my mum organises Operation Christmas Child in our village. She promotes it and encourages people to cover shoeboxes with wrapping paper and then fill them with toys, stationery, hats, flannels etc to send to children in war torn countries who might not otherwise receive any gifts at Christmas. And then mum and a couple of other volunteers have to check every shoebox to make sure that all the items are suitable and to add in any missing things (such as cuddly toys). This was mum's 9th year doing Operation Christmas Child and I'm very proud of her for it :D I helped her out with making some posters this year, but didn't feel up to going into the village primary school to help with checking the boxes though. The boxes (I think there were about 220 this year from our village) all went off on Friday, but my mum received a few late ones today and I enjoyed helping her check through them at home.

Mum went to a craft fair on Thur to sell some of her knitting. She had a nice time selling her things and talking to people about knitting and made £70 :D Mum brought me some Christmas wrapping paper back from the craft fair which is good because I didn't have any. I wont be wrapping Christmas presents just yet, but it's nice to know I have some wrapping paper for when I want to do it.

On Friday Claire came round for tea. Before she came I straightened up my bedroom, but again we stayed downstairs all evening :P We had a lovely time (despite me being very tired and having a bit of tummy ache) and played my favourite card game, Ligretto, for about 2 hours solid! :P

I almost forgot to mention that Thursday (19th) will be my third transplant anniversary. I wont be doing anything special to celebrate as I don't feel comfortable celebrating when my donor family will be remembering the loved one they've lost. On the day I'm sure I'll be thinking a lot, especially about my donor family and will also be in touch with them via email. And I have got a few nice things planned this week and next week.

Weekend at Lizzy's

Last weekend I visited my best friend Lizzy who lives about 80miles away. Lizzy used to live in my village though and our mum's were very close friends so as I was growing up, Lizzy was always there. She's quite a bit older than me, so got married 9 years ago and then moved away with her husband, H. They've lived as far as 180miles away, but now live only an hour and a half's drive away. And they have an adorable 3 and a half year old daughter, M. I try to see them as often as I can, but because I don't drive and there isn't a direct train to the city where they live, I have to rely on mum or dad for lifts either the whole way there or to a train station that's on the right line.

On Saturday morning mum drove me to their house and we arrived there just before 11.30am. H was out at work. Mum stayed for lunch and we gave M some books and some play cutlery that we'd bought for her. Mum also took some photos of us and drew round M's feet so she can knit her some socks, before leaving. M is sooooo cute. She's really bright and want's to join in with all the adult conversations! She loves books, so I had to read loads to her while I was there, including the four new ones we'd given her several times each! And she challenged me to read her a Topsy and Tim book from the back to the front or upside down, lol :P And she's always asking 'why'. We went to their local library to find a DVD for us all to watch and eventually settled on Madagascar, which I like and M loved :D She was very funny with asking 'why' constantly and she also questioned everything in her picture books. And M is also constantly full of energy and kept asking me to chase her round the house. I had fun, but soon felt exhausted! We ate tea together (and I ate loads :D) when H returned from work and then I read M a story before she went to bed.

H is very very quiet and doesn't talk much at all. So once M had gone to bed, he disappeared upstairs to watch boxing by himself I think. So me and Lizzy chatted and played a very fast, but fun, card game called Ligretto. And of course we watched the X Factor and the Xtra Factor together :D No-one else in my family watches the X Factor, so I usually watch it alone in my bedroom. So it was great to watch it with Lizzy on Saturday :D She really made me laugh with her funny descriptions of some of the contestants, even the ones she liked. Do you know What-A-Mess, a dog featured in a series of picture books? Lizzy thought that Stacey looks a bit like What-A-Mess, do you agree?! Rachel was Lizzy's favourite, but she went out the previous week, so last weekend Lizzy's favourite was Stacey and my favourite was Joe. And while we were watching the TV we heard loads of fireworks outside, but M slept through them all :) I wasn't nocturnal that night, so I fell asleep at about 11.30pm after listening to my iPod for a little while.

I woke a few times during the night, but I suspect that was just because I was in a new place. And I got up at 8am, but M had already been awake for over an hour! We had breakfast (well, H was still in bed) and I then played with M and got her dressed while Lizzy did a bit of work. Lizzy and M then went to church and I just relaxed and watched the music channels on TV. I was planning to head home on the train that afternoon, but I had 2 options depending on how I felt. If I didn't feel too good, then Lizzy was going to run me to the station about midday to catch a train and then get the car back in time for H to take it to work. If I felt good then I was going to stay at their house into the afternoon and then order a taxi to the station. I felt exhausted though, so we had a really really quick lunch when Lizzy and M returned from church and then headed off to the station. We set off from their house at 12pm and my train was due to go at 12.15pm. It was about a 10min journey to the station, so we were cutting it fine. Then we got stuck at traffic lights right outside the station! I just made it though and had time to say goodbye to Lizzy and M before boarding my train. The train took an hour and 20mins and so I met Dad off the train at about 1.45pm. He then drove home and I got in at about 2.15pm.

I had a great, but tiring, weekend. When I got home I missed Lizzy and M, but it was nice to be home again

Long overdue update

I can't believe how long I've left it to update. Whoops :P I didn't feel too good last week, so didn't manage to update this before I went away at the weekend. Then Sun evening and yesterday I was recovering, so now here is a long overdue (and lengthy :P) update.

I've had a really up and down week. Last Tue I didn't feel too bad, just a bit tired. Then last Wed for some reason I felt fantastic, so made the most of it by attempting to do loads. That wasn't sensible though as I then felt really ill (as well as being exhausted I had a sore head and sore eyes which Paracetamol and Codeine didn't help) on Thur and Fri. I thought I might not be able to go away at the weekend, but luckily I woke up feeling ok on Sat, so did go :) I had a good day Sat and an ok day on Sun (I was just tired). I had a great time with Lizzy and her daughter, but will update about that in a separate update because I think this one will be long enough without that too :P Then after my busy weekend I didn't feel very well at all yesterday (exhausted, achy and I had a headache). And I've felt better, but tired, today.

Now the weather is getting colder I'm feeling colder so am wrapping up in loads of layers and putting the heating on more often than I think my parents would like, lol :P Last night though I woke up in the middle of the night freezing cold, despite being under my duvet. That reminds me, I need to remind mum that I really need a winter duvet now as mine is a summer one! And my tummy aches are still about the same :(

I emailed my dietician last Tue with my weight, but didn't hear from her til she phoned me on Fri evening. She said she was happy for me to drop from 5 to 4 nights of feed per week :D But I have to try to have one 200ml high calorie drink in the morning after a night off feed. I had my first high calorie drink in a while this morning. The flavour is ok, but they are really thick and coat the inside of my mouth, yuk! Today my weight was the same as last week (50.5kg), despite 3 nights off feed, only 1 high calorie drink (instead of 3) and weighing myself after a night off feed rather than a night on feed! Yay :D I think I've been eating better too this week :D I emailed my dietician with my weight this morning and she replied this evening and suggested dropping another night of feed. I don't want to rush it though so will stay on 4 nights of feed for a second week and if my weight is ok next Tue I'll then reduce to 3 nights of feed a week. Fingers crossed.

I was speaking to a a friend from Hospital B last week. She told me that my favourite liver nurse, L, (who left on maternity leave just after my last clinic in Oct) gave birth to a healthly baby boy last Mon evening :)

I rang Hospital B last week and left a message on their answer machine for them to ring me back. Out of all the liver nurses (there must be between 5 and 10), the only one I dislike rang me back :( Grrr. I really struggle to speak to him on the phone, so the phone call didn't go well. But the end result is that I don't think the ward I'm on for my annual tests next month is negotiable, so it looks like I'll be on the medical day unit, rather than the transplant ward :( At least I'll be in the hotel overnight though :) And although my mum and dad are both great, mum was going to accompany me, which I prefer as we have so much in common and I think she understands me better than my dad. But it now looks like dad will be staying with me instead. I'm sure it'll be ok though.

Today in the post I received a letter from Hospital A asking me to phone them to make an appointment to see their physio team. I spoke to a physio at my last clinic at Hospital B and she thought that seeing a local physio might be beneficial to my health and my ME, so she sorted the referral out for me. I'll phone Hospital A this week to try to arrange that appointment.

Tomorrow I'm going to Hospital B to meet with the psychologist, J, to see if she can help my ME. I'm not sure whether it'll help or not, but I'll give it a try. We're probably going to head there a bit early (my appointment is 2pm til 3pm), so me and mum can go shopping in the city :D I'm looking for a new bag because I could do with one that is a little bit bigger than my current one.

Last Wednesday when I felt great, one of the things I got done was my ESA form :D I completed it, asked my dad to check it through and posted it off :D Now I've just got to wait and I think I'll probably get an appointment for a medical assessment at somepoint in the next 3 months.

This morning in the post I received a letter from my local job centre asking me to attend a Pathways To Work interview next Tuesday. I'm not quite sure what it'll involve, but I've been asked to attend because I'm on benefits and I think they will see if they can help me get some kind of work. I'll let you know how it goes.

I think I've mentioned before my outrage at transplant recipients not being entitled to free prescriptions. I've been loathed to pay for a pre-payment certificate and have kept putting it off . I've been trying to work out for ages whether I can get free prescriptions because I'm receiving DLA and ESA. That task was made more difficult by my local GP surgery providing me with out-of-date literature! :P But I looked it up on the Internet and even though DLA doesn't entitle me to free prescriptions (ridiculous), my ESA does :D Yay! :D

Last Fri we heard that the swine flu jabs were in at our local surgery and that they'd just finished vaccinating the staff, so we went to enquire about getting our swine flu jabs. The receptionists were getting letters ready to send out, but when mum tried to check that we'd be in the first batch they couldn't tell us because the letters weren't in alphabetical order! So we were told to wait to receive letters and then we could ring up or call in to make appointments to have our jabs. On Mon morning mum and dad's letters arrived, but there was no sign of Alf's or mine. So mum went in to find out what was happening and it turned out they'd not sent out letters to Alf or me! How ridiculous - I'm the one who is immunosuppressed! It's a good job we're on the ball because they clearly aren't :P So mum tried to book us appointments to have our jabs, but they didn't have 4 appointments together. So me and mum are having ours next Mon eve, Alf is having his the following Mon eve and dad will be having his at somepoint after that (he was invited to have his with Alf but he'll be away with work that day).

I also had some trouble getting a new tape from my local surgery to try on my NG tube because none of the ones I've got at the moment work (they either rip the skin of my cheek or fall off in the night). So a friend in the transplant community recommended one that had worked with her son when he used to have an NG tube. I ordered it in, but it doesn't come as a tape, just as a dressing. I've got no problem with that because I'll just cut it up into the right sized pieces, but the pharmacists had to run it by my GP before they could prescribe it. So that took a while, but we picked it up yesterday. I wasn't on feed last night, didn't try it tonight because I was getting connected in a rush so I could watch TV, won't be on feed tomorrow night, but will try it on Thur night and let you know how I get on with it.

My local GP surgery really is great, but I know it doesn't sound that way from what I've written about them in this update :P

At the weekend Holly S organised an abseil which she did with a team of volunteers to raise money for Live Life Then Give Life. You can find out more about it by clicking on Holly's name to visit her blog or visiting the sponsorship page here. They did amazingly - I've seen some photos and it was very high! I would have loved to participate, but my health isn't good enough to abseil at the moment :P I'm very proud of Holly and her team as they raised money for such a fantastic cause. And of course I sponsored them :)

R is back in hospital at the moment, but should be able to go home on Thur, fingers crossed. I'm keeping in touch with her and supporting her via text :) And of course I'm keeping her updated with what she's missed on the X Factor ;)

We didn't go out to any firework displays this year because I was worried about being cold, but I watched my next door neighbours' fireworks out of my bedroom window on Thur while keeping warm inside :D

While I was away at the weekend Alf got his coat and wallet back that he lost at a party, but there no sign of his phone. So he's currently phone-less and can't afford a new one.

It was my Nan's birthday yesterday, I think she was 86. We didn't manage to see her as some other relatives took her out, but we phoned her to wish her happy birthday. We'll probably see her next weekend. I had a very funny phone conversation with her. We were just having a general chat and then she asked me what I'd thought of the X Factor at the weekend. I'm not sure why her favourite is Lloyd, I had to disagree with her there. Anyway, even though she'd watched the whole of Sunday's episode she thought that the twins had gone out as well as Lucie, hehe :P I wish! She's lovely :)

I used to love writing short stories just for me, but since I've had ME it seems to have completely zapped my creativity. However when I was lying in bed feeling nocturnal a few nights ago I came up with a story idea :D I'm quite excited because I've not had any creative ideas for ages. I've not tried to develop my idea at all yet, but when I'm feeling ok I might have a go and see if I can turn it into anything. I will let you know if it comes to anything.

I was very happy to hear last week that the postal strikes have been delayed til at least the New Year, yay! :D I eventually received my Wii Fit Plus in the post last Wed and because I was feeling quite well I had a 30min go on it. It was fun, but exhausting! I've not managed to go on it since, but it looks promising from what I've seen of it so far :)

My 4 and a half year old laptop is dying. So I backed up all my music, photos and other stuff onto my external hard drive this morning, just in case. It's slow and often freezes. And the screen is currently held together (hopefully it wont fall apart) with green cable ties, lol :P Clever dad :) I've been doing some laptop research and it looks like I'll be able to pick up a decent new laptop relatively cheaply (for about £350 at current prices), but I hope to wait til the Jan sales if my current laptop will hang on for that long. Fingers crossed.

Yesterday I decided that my current desktop wallpaper picture (a photo of a castle I visited in Japan) had been up for too long, so I changed it to this photo of Mika that I found on the Internet :D

I've used MSN and Facebook chat quite a lot this week. Chatting to fellow nocturnal ME sufferers is good when it's gone midnight and you can't sleep :P I also use MSN and Facebook chat to keep in touch with hospital friends, friends who are currently away at uni and other friends that I don't see very often, as well as friends I see regularly :D

I seem to have watched huge amounts of TV this week :P
I've watched:

• The Restaurant - I loved the first 2 series but I'm not sure about it this year. It seems to be more about who makes good TV, rather than who could actually run a restaurant. It's entertaining though.
• Piers Morgan interviewing Dannii Minogue - I can't stand Piers Morgan, but I thought Dannii Minogue was lovely and I like her a lot more now after seeing that interview.
• Film 2009 - there are a few films I want to see in the cinema at the moment including An Education and Disney's A Christmas Carol in 3D, but I'll wait til nearer Christmas to see that!
• 4music Live From Abbey Road - I've just discovered this programme this series (it's on C4 on Sat nights at about 11.30pm I think) and some of the artists they feature are really good. So far this series I've seen and enjoyed The Killers, The Noisettes and Mika :D
• Never Mind The Buzzcocks - last Wed it featured Little Boots. She was lovely, but didn't get much of a chance to speak. And Claudia Winkleman annoyed me.
  
• The Paul O'Grady Show - I watch this when the guests are interesting and one night last week it was hosted by Jo Brand with Shakira as a guest. Shakira was very nice and her performance of Gypsy was great and Jo Brand was hilarious, especially when trying to belly dance like Shakira :D
• The Gadget Show - I usually half watch this, but actually gave up on it on Mon night because it was boring
• The Graham Norton Show - I watch this if the guests are interesting so watched it last night because David Tennant was on it :)
• When A Mother's Love Is Not Enough - a moving and thought provoking BBC documentary.
  
• Collision - ITV's new drama which is on from 9 til 10pm every night this week til it concludes on Fri. I've seen 2 episodes now and it's good.
• Pink Funhouse Live - 4music televised this last week. It was a concert from the tour I saw in April, so watching it (twice!) brought back some great memories :D And it was good to be able to see things up close as we'd been as far away from the stage as was possible when we saw her :P For some unknown reason they blanked out all the swearing despite this being on TV from 11.30pm and I found that really distracting. And they also cut bits out rather than showing the full concert. But I've purchased the DVD so am now looking forward to watching the whole concert :D
• lots more programmes on the 2 freeview music channels I can get (4music and Viva) :)

And I watched X Factor and Xtra Factor on Sat and Sun. I had great fun watching Sat's episode with Lizzy as because no-one else in my family watches it I don't usually have anyone to chat with about it. But Lizzy made me laugh with her comments on the contestants :) I thought that the Black Eyed Peas were fantastic performing live on Sun :D I'm annoyed at Simon over his decision to take it to deadlock on Sun, because after going on and on about how much he disliked the twins, when he had a chance to get rid of them, he didn't. And he promised he'd make his decision based on their performances in the final 2, but he clearly didn't as Lucie was much better than the twins. I'm not sure why he took it to deadlock - maybe he was trying to protect his acts by getting rid of the stronger act (Lucie), although he did say afterwards that he was surprised that the public gave the twins more votes than they gave Lucie. Or maybe, like Sinitta said on the Xtra Factor, he genuinely couldn't decide whether to keep the twins (for entertainment as he is the producer of the TV programme) or Lucie (because she could sing so would be good for him as a record producer), so he took it to deadlock. I think it was a cop out though and Lucie going wasn't fair, so Simon has dropped right down in my estimation now. Lucie was good and shouldn't have gone (she was my second favourite contestant). The twins can't sing and I'm really hoping they go out next weekend. I do think though that OFCOM having to investigate all the complaints they've received is a bit over the top though, people might be angry and might disagree with Sun's results, but surely you can't genuinely complain about Simon making the decision to take it to deadlock! I thought it was funny though on Monday when the comments section of the X Factor website went down due to being overloaded with comments after Sun's programme :P I have a feeling that Simon might regret his decision if, like people have suggested, they boycott the programme and/or stop voting for Simon's acts. Or I guess audience figures might rise now after the controversy. We'll have to wait and see. I won't be boycotting it though because I want to know what happens to Joe (my favourite) and Stacey (who was my third favourite, but is now my second favourite as Lucie has gone).

Did anyone see the new organ donation advert in the advert breaks of the X Factor on Sat and Sun? I think that's great that it got such a prime time spot, hopefully it's made some people think about organ donation and sign the organ donor register. I've also seen the advert on Channel 4 as well as ITV :) I think it's a great advert - very hard hitting, but that's what we need. If you've not seen it yet you can see it here.

And I'm really looking forward to Doctor Who on Sunday as the Radio Times says it might be the scariest episode yet. I doubt that though as it's been written by Russel T Davis, not Steven Moffat who has written the scariest episodes so far (including The Empty Child and Blink). Should be good though. I'm also looking forward to watching Children in Need which will be on TV a week on Friday (20th Nov). I love watching it each year :D I was very excited to hear that Peter Kay is doing a single for it which apparently could be as big as Amarillo. You can read more here. And Taylor Swift will be performing on the night :D

This week I've watched a few DVDs. I watched all 6 episodes of the first series of Absolutely Fabulous as I borrowed it from the library last week. I like that - it cheers me up and makes me laugh. So too does The Vicar of Dibey, I've watched a few more episodes of that from my box set this week :) I've also watched 2 full length films - Driving Lessons (starring Rupert Grint and Julie Walters) which was ok and Hope Floats, which despite starring Sandra Bullock (one of my favourite actresses), was disappointing. And I've also added lots of Christmas DVDs to my Tesco DVD rental list :D

This week I finally downloaded some music after trying to resist and save my money. Out of the four tracks I wanted though, I only downloaded two - Bad Boys by Alexandra Burke and Gypsy by Shakira. Oh and I also downloaded Meet Me Halfway by the Black Eyed Peas as I love that track. I also listened to The E.N.D by the Black Eyed Peas, but I thought it was disappointing. It might sound better after another listen though. Another song I really like at the moment is Cry Me Out by Pixie Lott. I'm still trying to resist buying her album til the price drops a bit more though. And this week I've also listened to Mika (what a surprise :P) and The Feeling :D

And on Youtube I also found videos about the making of Mika's 2 latest music videos. If you're interested you can see the making of Blame It On The Girls here and the making of Rain here. Enjoy, fellow Mika fans :D

So sorry for making this post soooo long. I'll try to update more frequently from now on, but I know that I've said that before and it doesn't always happen. If you've read this far then thank you for persevering with this lengthy entry :)

Quick update

I've had a rough week - felt awful yesterday and the day before - but am feeling loads better today so am off to stay with Lizzy :D Yay! Will update my blog properly on my return. Have a good weekend :)

Tired and a busy week so far

I've been quite tired since my last blog update, but that might be a result of going out to the concert on Thursday. I'm not sure though because I think my tiredness has increased and my energy has decreased over the last few weeks :( However this week I've generally been ok apart from being tired :) I had long lie-ins on Saturday and Sunday but I'm trying to get back into a better routine now. It's not easy to try to get up at a reasonable time though when my nocturnalism means I don't get to sleep before midnight and more often it's 1 or 2am!

Now the weather has turned colder I'm struggling even more with keeping warm. Today I don't have any plans to go out, but to keep me warm inside I'm wearing warm knitted socks inside my cosy knitted boot slippers and leggings under my jeans. Then I'm wearing a vest, a poloneck, a t-shirt, a fleece and a hooded jacket. And I'm still a bit cold, think I'm going to put the heating on for a bit. I can't believe that at the moment the rest of my family just wear jeans and a short sleeved t-shirt around the house!!

I weighed myself this morning and my weight was up 0.1kg. I've emailed my dietician and am waiting to hear what to do now because we said we'd review the feed plan today.

This morning I phoned the liver nurses at Hospital B and am waiting for them to call me back so I can ask about whether I can be on the ward when I'm in for tests next month, rather than on the medical day unit.

I've drafted most of the ESA form on the computer, so hopefully my dad will look over it with me tonight and then I can write it all up and hopefully get it posted off within the next few days. I'm a bit confused about the deadline though because one piece of paper says I've got 6 weeks to complete the form and return it, but something else says I only have 4 weeks! And I have to leave plently of time for it to get back with the postal strikes too. The postal strike is annoying! :P I preordered a new Wii game called Wii Fit Plus which was dispatched last Wednesday or Thursday so it would hopefully get to me on Friday (release day). I've not seen it yet though. And my Tesco Rental DVDs are being delayed, but I did hear that 2 more had been sent out to me this morning :)

Some things seem to be getting through the post ok though, as I got a lovely card from R last Thursday thanking me for the support I gave her while she was in hospital :) However I then heard yesterday that R has to be readmitted to hospital today for a fortnight :( :(

I've had a busy few days since the Little Boots concert last Thursday. On Friday and Saturday Claire came for tea (before going to mum's knitting group on Friday and before going out to a Halloween party with mum on Saturday) and on Sun my nan came round for the afternoon, but I was frustratingly tired and so couldn't do much. My nails were still painted dark purple from the concert though, so before I took the nail varnish off I modelled mum's knitted wrist warmers for some photos for her. And I managed to persuade her to give me a beautiful pair as an early Christmas present! :D

Yesterday I went into the city for the day with mum. We visited the new city library which has just had a big revamp. It was nice - I made my dad laugh by describing it as spacious and colourful, which it was :) I borrowed 2 DVDs from the library as they had a huge collection and I wasn't sure how delayed my Tesco Rental DVDs would be by the postal strikes. My friend H's mum works in the city library, so we had a very quick chat to her although she was very busy and I gave her H's late bday present, as I'd not seen her since her birthday last week. I got a lovely text from H this morning thanking me for the present - she's a fellow Mika fan too and we're going to the Mika concert together in Feb, so I bought her my favourite Mika concert DVD :D

In the city I only bought a pair of thicker leggings from New Look and some earrings from the market - each earring is a 5p piece on an earring wire :D I'm trying to be more careful with my money so I resisted buying a £70 purple stretch jeans (way too expensive, but they were lovely), a panda bag (amazingly cute, but not that practical) and an iPod lego brick speaker (thought I'd check out some online reviews of it first and also see if I could find it cheaper on the Internet). And I met up with my closest friend from sixth form, Catherine, as she was back from uni for a couple of days. We wandered around the city and I also gave her her birthday present as it will be her birthday in a couple of weeks. I felt ok yesterday morning but was quite tired after I'd been out for a couple of hours.

On Friday night the house phone rang at 3.20am, waking us all up. It also worried us because when the phone rings at that time we always assume it's about my nan. But it wasn't. Alf had gone out to a party and was ringing us to let us know that he'd lost his wallet, phone and coat! He then walked home about 5 or so miles on his own at 4am! We can't get out of him what actually happened that night, so we don't know if his stuff was stolen or not. Mum and dad really want to try to get his things back though because he needs his phone and his coat had cost £70! Boys! :P

I hope you've enjoyed looking at the Save Jess-tival photos which I gave you the link to here. Live Life Then Give Life have written a nice blog about the night here.

A new organ donation campaign by NHSBT has been released this week with the aim of increasing organ donors. Holly has written a fantastic blog about it here. Check out the new website here and keep an eye out for this advert on the TV. What do you think of the new campaign? Do you think it will make a difference?

I am a super organised person (when I feel well enough :P), so am pleased to be quite organised for Christmas already! I received details of my AYME Secret Santa on Sunday, so had to think about what I could give for that. I bought one of my mum's knitted Christmas puddings from her and am going to send that as I think that'll be an original gift :D I've now got all my Christmas presents bought. I've also started to gather together addresses for all the Christmas cards I'm going to send, so that when I come to write them I'll be prepared :) I'm not writing them just yet though.

I rang Lizzy last night and everything is confirmed for me going to stay with her and her family at the weekend. Mum will drive me there on Saturday morning and she'll stay for lunch before leaving. I'll stay that night and then get a train home on Sunday and dad will pick me up from our city station. I'm excited but a bit nervous too because my health isn't as good as it was last time I stayed with them. Fingers crossed it'll all go well and I'll be able to keep up with M who is 3 and a half and full of energy! :D

I watched the X Factor again this weekend. I thought Joe was the best on Saturday, but I really can't stand the twins! I don't think it's fair that the twins are still in the competition while contestants who can sing (like Rikki, Miss Frank and Rachel) are going out. Grrr. This week I've also watched An Island Parish and The Gadget Show. I've given up on watching Life, even though I know it's a great programme, because I just can't concentrate on it.

Since my last blog update I've watched the extra features of the Coraline DVD. I found them fascinating all about how the stop animation film was made. I've also watched the very funny Meet the Fockers and an old favourite, School of Rock :D

I am trying to be careful with my money at the moment, but couldn't resist buying a DVD from Amazon this morning. It's Pink's Funhouse Tour DVD and I loved the tour when I saw it back in April, so have been really looking forward to the release of the DVD :D

I'm feeling very tired today so think I'm just going to relax and watch a DVD or two this afternoon :)