A very busy weekend

On Friday afternoon my friend Claire came round for tea and then we set off together to Save Jess-tival :D I wore my new black leggings (didn't realise quite how thin they were til I was walking through London on a chilly Oct night!), my new purple slightly fluffy long sleeved top and a nice necklace :) And I wore one of my hooded tops on top to keep me warm while outside. We managed to get the 6.11pm train we'd planned to get despite Claire missing the turning to the train station! It was meant to get into Kings Cross at 7.01pm but got in 5 mins late. We thought we'd be ok for time as Save Jess-tival was going to start at 7.30pm and a lovely friend, A, had said she'd try to save us seats as our tickets were for unreserved seating. Then we got on the slowest tube ever - it took 25mins to travel 4 stops (the same journey took 10mins on the way back when we weren't in a rush!). And we met some drunk men on the tube - it was only 7.30pm! So by the time we got off the tube it had gone 7.30pm, eek! We did a very fast walk from the station toward the venue and then couldn't find it despite having printed a map off the Internet! So we asked some very scary looking bouncers for directions, lol! Found it eventually, not sure of timings here but it was probably about 7.45pm, so we rushed in worried we would have missed the beginning. Luckily we hadn't. We showed our tickets, bought some raffle tickets (I bought 10 and Claire bought 5, but we still didn't manage to win any prizes!) and went to find our seats. The fantastic A had saved us 2 seats right in the middle of the front row, so we were really close to the stage! Wow! Said hello to A, sat down and then the festival began.

An upcoming singer/songwriter called Susanna Cork opened the night. She was fantastic! She played the piano and sang 2 of her own songs, Storm in a Teacup and Chasing. Her voice was fantastic! And then she sang Savage Garden's Truly Madly Deeply especially for Jess. That was beautiful.

Next was Ed Byrne. Claire was really looking forward to seeing him, but I hadn't heard any of his material before. We both thought he was great though and very very funny :D Kept the whole audience entertained.

The third performance was from the amazing Natalie Imbruglia. She performed Wrong Impression, Shiver (dedicated to Jess) and Torn (which everyone sang along to) as well as 2 songs from her new album. She was really really good.

Then a new musical comedian, Mr Robin K, performed. It was his first ever gig. His songs were very clever and his performance was great :) You can follow his blog here.

The fourth performance was by a comedian called Glen Wool. I personally didn't enjoy his act. It was rude in places and he seemed to have a thing about bankers. He'd also recently got divorced and seemed quite bitter about that, so his performance was a bit of an angry tirade.

And the final act was the Yeah Yous. I thought they were definitely a talented band, but I wasn't very keen on their style of music. I did however quite like their cover of Duran Duran's Ordinary World.

In between the acts and at the end there was a chance to wander around a bit. The venue (The Village Underground, Shoreditch) had a great atmosphere and was very intimate. There was a LLTGL stall where I picked up a Save Jess-tival programme, some organ donation ribbons and a LLTGL t-shirt (as my previous one I had ordered off the Internet and it turned out to be way too big for me!). I briefly spoke to Sarah, Holly S and Emily who had been key in organising it and making it a night to remember, but of course they were all very busy. I also briefly spoke to the very busy Holly C who was the official photographer. I didn't get any photos because my camera couldn't cope with the low light, but will try to get hold of some photos from elsewhere to share with you :) And it was lovely to catch up with Holly S' parents. I've also since spoken to Jess on Facebook because I didn't get chance to on the night.

Me and Claire both had a fantastic night :D We eventually left to head home and got into Kings Cross station at 11.20pm, knowing our train left at 11.22pm from the other platforms. We attempted to run to the correct platform, but Claire's shoes kept falling off, lol, and I quickly got out of breath. We made to the train doors just as they shut in front of us, grrr. Luckily we only had to wait 40mins for the next train, so Claire had a drink and I had a solid but yummy croissant and then we caught the 12.01am train home, finally getting in at 1am! On that train we met yet another drunk wandering up and down the carriages asking if anyone had a bottle opener for his bottle of beer! When we got home we told mum all about our fantastic evening before Claire left to go home and I got into bed around 2am.

On Saturday morning I got up at 10.30am and me and mum left the house at 11.30am to catch the 12.06pm train back into London. I decided to wear jeans instead of leggings and also took a coat with me because I'd learnt my lesson from being freezing cold when outside the previous night. The journey was uneventful and we had plenty of time to spare before the theatre, so we wandered through Covent Garden. I love Covent Garden :D We both loved looking at the arts and crafts stalls, but I resisted buying anything even though I saw some lovely jewellery. We then followed our map to the theatre, but ended up round the back at the stage door instead of a the main entrance. We soon found the proper entrance though so wandered inside and bought a programme and sat down for a drink because we had so much time to spare.

We had fantastic seats, in the middle of the second row back in the dress circle. The seating in the stalls seemed much closer to the stage than we were, but when the curtain rose and I saw the set I was very happy with our view :) The set was really clever as it was the inside of a terraced house with both an upstairs and a downstairs. So the people in the stalls would have got neck ache looking up at the upstairs part of the set. And the set turned round to reveal the front of the house and the street outside and then when the scene needed to be changed to a working men's club, another small set just slid down in front of the front of the house. Difficult to explain, but really clever. And our tickets were really reasonably priced (£26 instead of £46 each) because I follow Diana Vickers on Twitter. She was my favourite in last year's X Factor so I was looking forward to seeing her in The Rise and Fall of Little Voice. I've not seen the film that the play is based on, but mum has and loved it, so knew we'd both enjoy the play. Diana was fantastic and her voice sounded even better than it had last year on the X Factor. She was a great actress too and so were the rest of the cast. It was great and me and mum both really enjoyed it :D

When the play finished we were planning to walk back to the nearest tube station and get the tube back to Kings Cross, but we decided to walk back to Kings Cross instead as we both love London and wanted to see a bit more of it before returning home. That was lovely :D I spotted a Filofax shop on the way so got myself a 2010 diary for my Filofax for just £5 - bargain! And I saw a shop called Cinema Store which I'd never seen before. That was great and I loved looking at all the Pixar artwork books, but resisted the temptation and only bought a Wall-E badge for 50p :) We got back to Kings Cross and got a later train home than we'd been planning (6.36pm), so got into our local station at 7.45pm (it was a slow train). Luckily I got home just in time for the X Factor :D

I really enjoyed relaxing and watching Saturday night's X Factor after such a busy couple of days. I thought the twins were awful and Miss Frank and Lloyd weren't very good either. I really liked a few of them, especially Lucie, Stacey, Joe and Jamie. I quite liked Rikki for the first time, but still didn't see what other people see in Olly, I don't like him.

On Saturday night I went on the Internet for the first time in over 24 hours (which is ages for me) and got really frustrated with my laptop. I've had it for over 4 years, so it's getting quite old and usually freezes for a bit if I try to make it do more than one thing at once, which is annoying enough. But on Saturday night it was freezing when the only thing I was running was Mozilla Firefox, grr. I'm going to try to get it to keep going until January, so I can then get a new laptop in the sales. And hopefully by January Windows 7 will be out, so I can get a laptop with that on rather than Windows Vista.

When I checked my emails I found a lovely email from my donor's other sister, C. I've been in touch with J, my donor's oldest sister, via email since shortly after my transplant and she keeps her parents up to date with my progress, which she says really helps them. But I'd never heard from C before Saturday. She basically said that she loves reading my emails to J, so thought she'd send me an email herself :) I'm currently working on a reply, but I can't get it quite right, so wont send it til I'm completely happy with it.

And I also had a Little Boots email newsletter with a link to her new video. Her next single will be Earthquake (my favourite song from her album Hands) and you can see the video here. I think I like the video, but it's not quite exciting enough for me, lol. It's good though. I'm a bit disappointed with her outfit, as I really thought that she was going to be an artist who didn't feel that she had to wear low cut tops to impress people, but maybe not. Never mind. And now it's less than 2 weeks til I'm seeing her in concert, yay, can't wait :D

I didn't expect to be nocturnal on Sunday night after my busy weekend, but was awake til about 3am! I had a lovely long lie in Sunday morning til 11am though :D When I eventually got up I felt surprisingly good, but then the exhaustion hit! My Nan came round early in the afternoon and it was lovely to see her just like it always is :) I don't think I was very good company though because while we were all sitting chatting in the sitting room I lay down on the sofa and fell asleep! Didn't feel any better after my sleep, but I never usually do so that wasn't a surprise. Later I helped my Nan learn how to work her phone as she can do the basics, but couldn't access the photos that my cousin's partner had put on there of their little baby. So I helped my Nan find them and wow, is my little second cousin (who is just 8 weeks old) cute :D

After tea I managed to persuade my Nan and Mum to watch some of X Factor with me because they both wanted to see Cheryl Cole and Whitney Houston perform. My lovely Nan is 85, but really enjoyed commenting on the contestants and judges on the X Factor, hehe. She liked Lloyd and was commenting on how good looking he was. She also liked Rikki. And she decided that she strongly disliked Cheryl Cole after seeing her performance. Cheryl's performance was better than I expected, but I wasn't sure about it. Was she miming? I can't imagine she'd risk singing live, but if she mimed I think she did it well. I thought Whitney Houston's performance was good, but I was surprised at the amount of singing that her backing singers did. She was good to continue with her performance after her top came undone!

I was really disappointed that the twins weren't even in the bottom two, they're awful!! Hope the go out very very soon. I'm glad Rachel survived over Rikki, but think that the twins ought to have gone instead. Rachel must have taken such a knock being in the bottom 2 both weeks, poor her. She's got a great voice, but I don't think we've seen enough of her yet to make her likeable.

Last night I was quite nocturnal again so wrote the majority of this blog update. Thought I'd better check it through when I was more awake though, so didn't publish it last night, lol. Today I've been exhausted again so have mainly just been relaxing. I caught up on a few things I'd recorded off the TV yesterday including a channel 4 Alexandra Burke interview and a great Taylor Swift ITV 2 Hot Desk interview, she seemed lovely :) Can't wait to see her in concert next month :D

I received a Mika email newsletter this afternoon with a link to his new video for 'Rain'. Seems a little bit premature though seeing as 'Blame it on the Girls' hasn't yet been released! 'Rain' will be released towards the end of November and you can see the video if you click here and then click on the Rain video exclusive on the top left of your screen. The music and the video appeared very out of sync to me, but I'm not sure if that's just because of my dying laptop and/or Internet connection. If it is very out of sync then hopefully it'll be better when it's up on Youtube or shown on the TV. I like the video, it's definitely odd and very energetic :) What do you think?

Just heard from my friend R and hopefully she'll be discharged from hospital on Wednesday. I've not heard any more from K's mum recently, so I'm assuming that no news is good news and that's she's continuing to improve.

This morning I received the lastest edition of the Official Nintendo Magazine in the post, so am off to read that now. Need to pop round to the surgery later to collect my ESA medical certificate too. And I'm looking forward to watching The Gadget Show and Life on TV later.

Don't forget to Ask Me Anything, see the bottom of this blog post. Thanks Jess and Emma for your comments so far, but more from other readers would be appreciated. Thanks :D

Update and Ask Me Anything

I still can't get my Melatonin dose right. 5mg doesn't help my sleep but 7.5mg is too much. I think I need a dose somewhere inbetween, but can't do that with my current 5mg tablets. So at the moment I'm taking 5mg each night and still being nocturnal. Grr.

And I'm still struggling with tape to secure my NG tube in place. I've found a tape that doesn't mark my face, but it tends to fall off during the night which isn't ideal, lol. That's now 4 tapes I've tried recently and none of them are right.

Yesterday I heard from Hospital B and my annual review which was arranged for November has now been postponed til December because someone who is needed for one of the tests isn't in again til December! So I'll be in from the 13th til the 15th December. And instead of staying on the ward they're putting us up in the hotel :) At first I wasn't very happy with the idea of being in so close to Christmas, but now I'm looking forward to escaping and going to see the Christmas lights in the city :D I was in over Christmas in 2006 after my transplant, but wasn't well enough to get out and see the lights then. I was considering doing this hospital stay on my own because although my parents have always stayed with me in the past, when I stay in Hospital A in the future I'll have to stay on my own. But because I'll be in the hotel, not on the ward, my mum is going to stay with me. I'll be admitted on the Sunday and have bloods on the ward. Then on the Monday I'll have a general anaesthetic for my annual scopes. And on Tuesday I'm going to have a kidney test (because Tacrolimus, the immunosuppressant I take, can damage your kidneys) before heading home. Hopefully I'll also see the psychologist, J, somewhere in there too.

The diasadvantage of this delay with my stay at Hospital B is that it'll now be longer before I might get an explanation and hopefully a solution to my tummy aches as my consultant is relying on my scopes to find the cause. I had bad tummy ache on Wednesday and awful tummy ache yesterday. Yesterday I just felt awful :( As well as really bad tummy ache, I was freezing cold (and occassionally boiling hot), had a small temperature (bit not enough to worry about), a headache, no energy and was completely exhausted. Paracetamol didn't help my headache and sleeping in the day (something I really try not to do usually) didn't help either. So I cancelled my dentist appointment for yesterday afternoon as I didn't feel well enough to go out and luckily felt a bit better in the evening.

My Mum's car has just been fixed for around £300, which is much better than the £500-£600 we had expected it would cost :) As I'm writing this she is on her way to pick it from the garage with a lift from a lovely neighbour. So it'll be great to have the 2nd car working again :D

My parents have decided that they are going to go away next week from Tuesday to Friday, so I'm both excited and nervous about that. I can't cook, so might need to have some basic lessons this weekend so I don't starve while they're away. And I think I'm also going to need to learn how to work the washing machine, lol. I contacted Sophie a couple of days ago and she's happy to give me a lift to the orthodontist next Thursday so I can keep that appointment to have my braces tightened. My orthodontist also plans to replace my current wires with thicker wires and apparently he can fit stoppers onto the ends of the new wires, so that should prevent my annoying wire coming loose every time I eat.

I had my hair trimmed yesterday morning by my favourite hairdresser :) She had to take more off my hair than I'd expected because the ends were so split (can't remember the last time I had my hair trimmed!), but I'm very happy with the result as my hair looks much less straggly now. My hair trim took 25mins and cost £17.50, quite expensive I thought! Not too bad to pay occassionally though.

My Dad works with providing housing for the homeless. He's the manager of a team which manage a couple hostels in our local city. He finds his work quite tough sometimes, but it can be very rewarding. Just less than a fortnight ago Dad was called out to work urgently because there had been a death on the property. When this happens it can be quite traumatising for some of the staff involved and creates a lot of work for the whole team, but especially Dad. But luckily deaths in the hostels only happen rarely. Yesterday there was another one - the second death on the property in less than a fornight. So Dad had a hectic day at work yesterday, was on call last night and has to work til 10pm tonight. I don't think I could do the job he does, but I am very proud of him.

Yesterday I received a very scary looking ESA medical questionnaire in the post that I need to fill out and return within 4 weeks. I'd assumed that because I already get DLA and because my GP had provided me a medical certificate then that would be all that was needed for me to claim ESA. But obviously not. If I fill out and return the questionnaire and they are happy that I am not well enough to work then I'll have to have a medical assessment with a healthcare professional. If the medical professional agrees that I am unable to work then I will be able to continue receiving ESA. But if either the questionnaire or medical assessment fail to convince them that I am not well enough to work, then my ESA will be stopped. I know I am unable to work at the moment due to my health, but am not sure how easy it will be to get this across via the questionnaire and the medical assessment, so I'm quite worried about it.

Until my ESA has been approved by the questionnaire and medical assessment then my GP needs to keep providing me with medical certificates to say I cannot work. I received a letter this morning saying I need to provide them with another certificate by Monday because that's when my current one expires. Monday isn't giving me very much notice, so I emailed my helpful GP this morning asking for a medical certificate today, but unusually he hasn't replied :( Can't do anything else, just wait.

Since my last update I've watched 3 DVDs. Baby Mama was a very original idea and was funny in parts, but I don't think it was executed as well as it could have been. Wedding Crashers was very funny and I'm sure I'll watch it again in the future. And the third film I watched was called Fly Away Home. This used to be my favourite film when I was much younger, as we taped it off the TV one year and we all used to enjoy rewatching it. I managed to pick it up on DVD a little while ago but hadn't rewatched it for many years until I decided to watch it again the other day. And I'd forgotten just how good it was :) I'd highly recommend it, as it's very well made, but not very well known.

Yesterday I watched a special edition of the South Bank Show all about the history of Pixar and their films which I'd recorded earlier in the week. I found it really interesting and am now looking forward to rewatching some Pixar films :) Today while eating lunch with my Mum we watched a bit of Who Do You Think You Are which was all about Laurence Lewellyn Bowen's family history. That was quite interesting so we're hoping to finish watching it later. Sometimes I like Who Do You Think You Are episodes and sometimes I don't, as it depends who the celebrity is and what their family history is like.

Today I've also been getting organised for going out tonight. I was a bit worried after feeling so awful yesterday as I didn't know whether or not I'd be well enough to go out today. But luckily I'm feeling much better so far today :) And I'm really looking forward to Save Jess-tival tonight :D I've got a busy day planned tomorrow too with going to see The Rise and Fall of Little Voice matinee performance and then rushing back home in time to watch X Factor, so will probably do my next update on Sunday or Monday. I'll tell you all about Save Jess-tival and might have some photos to show you too :) I hope everyone reading this has a lovely weekend.

Ask Me Anything!
I've stolen this from some fellow Bloggers (Emily, Emma and Rebecca) as I think it's such a great idea. I'd like to invite you to ask me anything via a comment on this post. You can ask absolutely anything and you can ask more than one question if you'd like to, the more questions the better. And anonomous questions are fine too. You can ask me about my health, my life, ME, transplants, organ donation, anything! I will make a start at answering the questions next weekend, so the deadline is next Friday (23rd October). Please leave a comment with a question as I want to have some questions to answer :)

A busy weekend, Melatonin and maggots!

I seem to have been quite busy since my last blog update :)

On Friday evening Claire came round. I had a mad bedroom tidy beforehand and then we ended up staying downstairs all evening, sods law! We had a lovely time planning our night out at Save Jess-tival on Friday and are both very excited about it :D Doors open at 7pm and we've got unreserved seating, but we probably wont be able to get there til just before it starts at 7.30pm as Claire has to work in the day. A couple of lovely friends will try to save us 2 seats though :) The music and comedy should be great but I'm also looking forward to seeing friends from the transplant community too. I can't remember the last time I went to the hairdressers so have got an appointment for Friday morning at 9am (not my ideal time, but the only time they could fit me in) to have my split ends cut off for Friday :) And I'm also looking forward to seeing The Rise and Fall of Little Voice on Saturday, so fingers crossed I'll be ok after going out the night before.

Claire also popped round on Sunday evening too as she'd been out to a knitting exhibition in London with my Mum during the day. They did make me laugh though when they got on the wrong train at the end of the day in London and ended up miles away, hehe! Dad had to go and collect them and bring them home via the station they set off from to pick Claire's car up.

On Saturday morning we all had our annual flu jabs. I was quite nervous about mine beforehand because I usually feel very faint afterwards, but was fine this time :) Did have an achy arm for a couple of days though.

On Saturday we also went to Tesco where I bought myself some leggings because I wanted to have something other than jeans to wear. I was very surprised that they fit me perfectly because although I'm not that short (I'm 5ft 4), my legs must be abnormally short because trousers are usually way too long for me. My jeans are special short leg ones, but standard leggings fit me fine. I'm hoping to wear them on Friday along with one of the new tops I bought on my shopping trip after my hospital appointment last week so it looks like I'm making a bit of an effort rather than just wearing jeans.

And very excitingly on Friday we also went to the local cinema to see Up 3D. It was fantastic, another Pixar masterpiece :D The story was original, the charaters were well developed and the 3D effect was used subtly, but not too subtly :) And all my family enjoyed it, even Alf! I'd like to go and see it again at the cinema, but if I do I'll try to go at an off peak time because I found all the little children in the cinema on Saturday very annoying constantly running in and out to the toilet!

I didn't make it to the car boot sale on Sunday as Dad went fishing so I didn't have a lift. It's probably good that I didn't go though as I know I would have spent lots of money!

This week I've watched a few DVDs. I watched some Mr Bean episodes from my DVD boxset, but they weren't quite as funny as I remembered them from when I last watched them when I was a lot younger. I also watched a fantastic film called Memoirs of a Geisha. I love the book, so was a bit worried about watching the film because films are often disappointing when based on a book you've read. But the Memoirs of a Geisha film was fantastic and almost as good as the book. It was a bit long for my poor concentration at 2 hours and 20 mins, but that's not a bad length for an adaptation of a 400 page book. I'd highly recommend both the book and the film. And if you watch the film make sure to watch the special features on the DVD as they are a fascinating insight into how the film was made. Mum persuaded me to watch a film called Mermaids with her which starred Cher. It was quite good, but I don't think I'd watch it again. And I also watched a DVD called Knocked Up which was really really funny and much better than I expected :)

On TV I've watched the X Factor of course. I'm happy that Kandy Rain went out, but can't believe that the twins are still in. My favourites are Stacey and Lucie at the moment. I thought Robbie Williams' performance was awful and am wondering like many others are whether he was stoned. Or maybe he was just very very nervous. Alexandra Burke's performance was much better though. It'll be interesting to see which of their singles is number 1 in the chart on Sunday.

I also watched part of a channel 4 music programme (Live at Abbey Road) to see The Killers perform as I think they're great and would love to see them in concert sometime. The Sugababes new song and video (About a Girl) really disappointed me and after Get Sexy and now this I don't think I'm a fan any longer.

David Attenborough's latest programme Life was great as expected and I liked the way it only spent a short amount of time on each animal as that kept my concentration well. I noticed a programme called The Force in the Radio Times earlier in the week and thought it looked like it could be promising if done well. It really surprised me as I thought it was excellently made and really fascinating. I'd highly recommend watching it on 4OD using the link above. Part 2 is on next Tuesday at 9pm on Channel 4 and I'll definitely be watching. It's even made me wonder about working in the police force as I find the idea of putting all the clues together to solve a crime fascinating.

This week I've had a few disagreements over the heating with my parents. They say it's not cold enough to put it on (apart from Friday evening which was an exception), but I'm often freezing so really want the heating on. The last few days I've been slightly warmer though so have coped ok without heating, but I'm hoping we'll be able to put it on soon.

I've been fiddling with my Melatonin dose a bit this week. 5mg wasn't helping my sleep so on Saturday night I took 10mg instead. That worked as I fell asleep very quickly that night, but unfortunately I felt really sleepy (not just my usual tired) all day on Sunday and had no energy at all. I suspected that 10mg was too large a dose, so on Sunday night I took 7.5mg (which I got by chopping a 5mg tablet in half to get the 2.5mg which I took with a 5mg tablet). I fell asleep quite quickly on Sunday night with that dose and was tired but ok on Monday. So I took 7.5mg again on Monday night. Annoyingly on Tuesday morning I just couldn't get out of bed. I woke at 9.30am when my alarm went off as usual, but couldn't get up til 11am, I just didn't have the energy. Tonight I'm going to take 5mg and see if that helps me get off to sleep quickly now the Melatonin seems to have built up in my body, but I don't know what I'm going to do after that as it seems like I need a dose between 5mg and 7.5mg, but can't make that with my 5mg tablets. The tablets do come in smaller doses, but if I wanted more I'd have to buy them because my PCT can't prescribe them, and I dont' want to do that.

On Tuesday morning I weighed myself and found I'd put on 0.6kg this week :D So I'm now at 50kg which is my target weight, but my dietician wants me to put on another 2kg before coming off feeds. I'm currently on 6 nights a week of feed, so think that my dietician might suggest dropping it down to 5 nights now I've hit 50kg. Hopefully I'll hear from her soon as I emailed her after I weighed myself.

My current enteral feed pump needs servicing soon, so I heard from the company which provide it a little while ago saying that they needed to collect it, so a man came out to pick it up on Friday. However he didn't have a replacement with him, so I couldn't give him my only pump as I needed it! He was very grumpy. I've contacted the company again and they are now sending out someone to collect my pump on Thursday and I should also get a new one sent out the same day but in a separate delivery. Fingers crossed.

The Royal Mail postal strikes aren't meant to start til next week, but I think something has been up with the post this week as it seems to have been delayed a bit. The turnaround of my rental DVDs seems to be taking ages. Usually if I send them back one day, they'll be received the next day and new ones will be sent out which I'll receive the following day, so 2 days later I'll get new DVDs. But I sent 2 DVDs back last Thursday and still haven't received new ones. Hopefully they'll be with me within the next few days. But all the Christmas presents I ordered last week have arrived ok :) For some reason I received a new debit card in the post a few days ago, but my current one doesn't expire for a year! How odd. I hate making phone calls, but think I'll have to ring my bank up to check this out.

I think I mentioned on my last blog update that I'd sent R another parcel to cheer her up in hospital. I heard from her on Monday saying she'd received the parcel and really liked it. And if all goes to plan she'll be discharged from hospital early next week :) K is doing really really well and came off the ventilator on Sunday. After being awake for just 10 mins she was asking for food, lol. Hopefully she'll be transferred back to her local hospital soon. It's amazing how well she's doing now after being so critically ill just a week ago :D

Dad's car had its MOT this week and needed a couple of hundreds pounds of work doing on it to get it through the MOT. Now Dad is going to try to get Mum's car sorted out ASAP. Also this week Chris' car has broken! It's the same problem as he had a short while ago, I don't know anything about cars, but I think the head gaskett has broken or something like that. It sounds expensive to repair. And despite it looking like they're going to need to spend a lot of money on Chris' car, Chris and Sophie are still planning to get a pair of Degu soon!

Next Thursday I have an orthodontist appointment to get the wires on my braces changed. I'd thought that I'd get a lift into the city with my dad on his way into work that day, but Dad has changed his plans and is going away fishing next week instead. Although the orthodontist is only 25 miles away, getting there on the (3) buses would take around 2.5 hours, so I really don't want to do that. Chris' car is broken, but I'm going to ask Sophie if she will be able to give me a lift on Thursday. Fingers crossed. Otherwise I think I'll have to try to rearrange it but I don't know how long it'd be til they could fit me in again.

Mum is considering going away with Dad next week, so if that's the case me and Alf will be home on our own for 3 nights! Mum and Dad have never gone away like that before I've never been well enough. Mum's not made a decision yet, but I don't know how I feel about the idea. I know I'll be lonely if Mum goes too because we are very close and get on really well and also I probably won't go out while she's away, so won't see anyone apart from Alf. And then of course there's the what if something happens with my health or my medical supplies etc. But it's quite exciting too as I know for most people my age staying at home on their own is something normal, but I've never done it before and it would help my independence if I knew I could do it. Will let you know what Mum decides to do.

Today me and Mum were sitting on the bench out the front and mum pointed out something crawling across the drive. She thought it was a caterpillar, but on closer inspection I realised it was a maggot! Yuk! Then we saw there were loads and loads crawling across the drive. Dad has a friend who shoots rabbits, so he often brings a couple round for us to eat. Last week he brought us some pigeons which we had in a meal. Dad wrapped the remains up really well and put them in the outside bin. That bin was where the maggots were coming from today. They were climbing out of the bin, falling off the top onto the drive and then crawling across the drive to the lawn. There must have been nearly 100 of them out of the bin and I dread to think how many were in the bin. Yuk! Dad was out at work at this point and we rang him to ask for advice but he wasn't very helpful, think he was busy. Mum found a spray can of wasp/ant/fly killer, but it didn't harm the maggots at all! So we poured boiling water over the ones on the drive (but didn't dare open the bin) to kill them as we didn't know what else to do. When dad came home his solution was to pour bleach into the bin. I think he'll be more careful when disposing of animal remains in the future!

There was an interesting issue in the news this week about a development in the understanding of what causes ME. You can read an article about in on the BBC news website here and one about it on The Independent website here. I think that it sounds positive, but the study was only done on 101 ME patients, so it needs to be studied more widely before conclusions are drawn from it. It sounds like a step in the right direction for better understanding ME though.

I've just seen the time and so am heading to bed now. There'll be another blog post coming soon with details of how to ask me anything, so keep an eye out for that. And of course I'll report back on how Save Jess-tival and The Rise and Fall of Little Voice go. Take care everyone. Xxx

Cinema, money, Glastonbury, a hospital appointment and K

I often think that nothing much happens to me, but then I come to write a blog update and it just grows longer and longer :p

The biggest event of my week was probably a trip to the cinema on Friday. Usually this would be quite a simple outing because the cinema is only a 10min drive away, but on Friday I had to use the buses to get there. I've already mentioned how I dislike the buses and this dislike was just strengthened on Friday. I went on my own too, which made it even more of an adventure! The first bus came 15mins late and on the other side of the road than I expected it to be, so I missed that one. I later found out from Alf that it would have come back on the right side of the road, but I'd not hung around long enough to find that out. So I walked to the other (main) bus stop in the village for the next bus. That one came 15mins late. Then I discovered a return adult fair was £4.90, what a rip off! I'd planned to get to the cinema 45mins early, but with missing the first bus and then the second bus coming late it looked like I'd be at the bus stop near the cinema as the film started! The bus route was very indirect, we went round all the villages and estates and what would take 10mins in the car took 40mins on the bus! It was timetabled to take 50mins though, so I arrived at the cinema just in time!

The film I'd planned to see was Toy Story 3D as I love Toy Story and thought it'd be fantastic in 3D. I was really disappointed as it looked 2D to me, the 3D effects were just too subtle. Because I came out of that so disappointed, I changed my plans and instead of heading straight home I bought a ticket to see a second film, The Invention of Lying. I'd heard a bit about it and thought it looked like it'd be good, but was a bit wary because I can't stand Ricky Gervais. It was great though and very funny :D And then after that my Dad came to pick me up so I didn't have to use the bus again to get home.

Still not sure what's happening about Mum's car, but apparently it is going to be sorted soon. I think Dad has decided to get Mum's current car fixed rather than buying her a new one. But we're waiting for my Dad's car to be MOT'd this week first before we do anything.

Also this week I went out with my mum on Saturday (using Dad's car) to what used to be a garden centre, but has now expanded and sells craft stuff, books, pets... I wasn't impressed with their gigantic Christmas display though - it's only just October! There I bought quite a few nice but reasonably priced Christmas presents for friends and family as I'm always on the look out for bits and pieces, so I don't have to rush madly in December. I've already got loads of bits and quite a few of them are from carboot sales :D Very economical ;) I was planning to go to our local carboot sale on Sunday, but it was cancelled.

Since the beginning of October I've been recording all the money I spend so I can work out where it goes. And I'm shocked with the amount of money I've spent so far (more than usual), as from the 1st (Thur) to the 4th (Sun) I spent £46!! Whoops. Fri was very expensive because I bought 2 cinema tickets and a return bus ticket, so that day cost me £19.50. But before that I'd not been to the cinema since I saw Harry Potter 6. And then Sat was expensive because although the Christmas presents I bought weren't very expensive I did buy a lot of them, so that cost almost £17, but I guess I would have had to spend that money (if not more) on Christmas presents during the next couple of months anyway. And I've also bought some new earphones (because Apple iPod ones are rubbish) and a membership to HMV's reward scheme because I shop there a lot. There are 2 CDs I really want to buy at the moment (Pixie Lott's and Shakira's) but I'm trying to resist til they drop in price a bit. I've also set up a direct debit payment from my bank account to pay my parents my monthly rent.

I've been trying to work out about paying for my prescriptions as I'm now out of full time education but it's all so confusing. Surprisingly I'm not entitled to free prescriptions even though I've had a transplant so will be on medication for life (yet people who have diabetes, asthma, thyroid problems... qualify for free prescriptions - grrrrr) and receive Disability Living Allowance and Employment Support Allowance. I've attempted to fill out an application form to apply for help with paying for my prescriptions because of my low income, but that application form isn't straightforward, so I need to phone up the benefits people and ask them some questions. If I can't get help with paying for my prescriptions, then my cheapest option will be a prepayment certificate which will cost £104 a year.

Last Thursday there was a very good piece on the One Show about organ donation and whether we should change to an opt-out system or not. They even got Alexandra Burke on the programme to talk about it with them. You can see it on iPlayer here, so have a look (it's on at the beginning) and let me know what you think.

We've got our tickets sorted for The Rise and Fall of Little Voice last week. We've not had to pay any more money and we've got very similar seets (in the same row) :D We're going a week on Saturday, so I'm excited about that :D

Alf seems to have been enjoying college so far. He just has a 3 day week (Mon to Wed) but because they don't have any free periods it is equivalent to a full time course at sixth form. However I'm quite amazed at the speed he has managed to get himself put on report - he started last Mon and was put on report on Wed. That must be a record! He loves most of the stuff they learn, both practical and theoretical. But once a week he has a 90min lesson called key skills, which as far as I know is where they do maths. So last Wed Alf had to count animals in his key skills leson and understandably he got bored. So I think he messed around which lead to him being put on report for 4 weeks. Whoops.

Yesterday Glastonbury tickets for next year went on sale. Dad and Alf go every year, but the plan was that Mum would go with them next year (it's not my kind of thing). So yesterday Dad was ready at the family computer and with the phone and I was ready at my laptop when the tickets went on sale at 9am. Alf however was nowhere to be seen (he'd stayed at a friend's house overnight). Not surprisingly the website was overloaded and from 9am til 10.30am me and Dad tried with no success to get through to the booking tickets page. Then at 10.30am Alf came home, sat down at his computer and got straight onto the booking page!!! To stop ticket touting everyone who wants to buy tickets has to register in an earlier period and then they get a unique registration number to use when buying tickets. Somehow Dad mislaid Mum's registration number, so could only get him and Alf tickets. He kept trying to get Mum's registration number on the Internet, but that facility was on the same website that the tickets were on sale on, so Dad couldn't get through. He tried all day with no luck. Then we heard that the tickets had all sold out. So Dad and Alf have got tickets but Mum hasn't :( I know that Dad should have checked beforehand whether he'd got all the registration numbers or not, but he was called out to work on Saturday, so he didn't get the chance.

I saw a 2 part science programme all about twins on the BBC last week which was very interesting. And of course I watched the X Factor this weekend too :D I gave the Xtra Factor a try for the first time this weekend, but it just annoyed me! I've also watched some Vicar of Dibley episodes from the boxset I got for my birthday and a Mr Bean boxset that I bought last week arrived in the post, but I've not watched any of that yet. Surprisingly I don't seem to have been charged for it ;) I've watched 3 DVDs this week too. Confessions of a Shopaholic disappointed me, Definitely Maybe was fantastic and I'd highly recommend it and the Break-Up (which I expected to be a romcom) was very depressing! I also discovered an interesting film magazine called Filmstar which I've enjoyed flicking though. And I've spent quite a bit of time on the Internet and on MSN as usual.

I've watched and listened to a lot of Mika this week, surprise surprise :p He was on Radio 1's Live Lounge last week where he was interviewed, performed We Are Golden and covered Lady Gaga's Poker Face. I can't stand Lady Gaga or her music and especially dislike the song Poker Face. But I quite liked Mika's version of it. You can listen on iPlayer here, but it wont be available for much longer. If it disappears from iPlayer, you can download Poker Face here (I know it's a safe download as I've downloaded it from there). Mika was on Jools Holland last week which you can watch here until Tue night. I've only seen it 3 times ;) And Mika's new music video, for Blame it on the Girls, was shown for the first time on Saturday. You can see it on Youtube here. I love the song, but don't like the video. However my Mum who is also a big Mika fan, loves the video. Let me know what you think. I've also listened to The Boy Who Knew Too Much loads more and joined a Mika fan club on the Internet. I'm currently checking his official website, MikaSounds, regularly as his UK tour dates are due to be announced today. I'm excited :D

My nocturnalism has been up and down this week. I managed to get a couple of early nights (11pm to midnight) at last week, but annoyingly it didn't make me feel any better or give me any more energy the next day. And I've also had some quite nocturnal nights too where I've been up til 2am ish.

My tummy aches are back after a month will almost none. Grrrr. They stopped when I went back onto enteral feeds and stopped taking my high calorie drinks, but I'm not sure exactly why. But then this week I've had tummy ache every day since Wednesday :(

I heard from my dietician last week and together we decided that I should try 6 nights a week on enteral feeds, so I had Fri night off and am interested to see what my weight will be like tomorrow. My dietician was disappointed that going back on feeds hasn't helped my energy levels, but I didn't expect it to as I know that my low energy levels are due to the ME, so getting more calories isn't going to solve that problem.

My mood continued to be great and I felt really optimistic and cheerful until yesterday when I felt very down and fed up. I feel the same today too. Sometimes I feel down and don't know why, but this time it's at least partly because I'm not looking forward to clinic tomorrow and am very worried about K.

Early last week I cancelled Tuesday's clinic at Hospital B as I couldn't see any way to get there. I then discovered that it wasn't just a clinic scheduled for Tue, but also an ultrasound scan (to look for the cause of my tummy aches) and an appointment with the psychologist. L, a liver nurse, tried to rearrange everything together for a later date, but was finding it difficult to co-ordinate all 3 appointments. Then I saw my older brother Chris who said that either he or his girlfriend Sophie would be able to take me on Tue. So at the end of last week I let the hospital know that I would be able to make it. They gave me the time of my clinic (12pm) and ultrasound scan (2pm) but didn't know when my psychologist appointment was. Only the psychologist knows that and she wont be back in til tomorrow! So I was advised to get there for my clinic at midday.

Then all possible lifts fell through as Chris has to work on Tue and Sophie is ill (which I think is an excuse because she's not confident enough to drive there). Mum managed to get Tue off work, so we looked at borrowing either Chris or Sophie's car, but Chris needs his to get to work and Sophie's car wouldn't be insured if anyone else drove it. So that left the trains. The journey takes just under an hour and a half in the car, but will take 3 hours door-to-door using the trains. Mum's friend will give us a lift to a different station in the morning, so we can then get just 1 train there, rather than 2. We'll leave here at 9am in the morning and will get to the hospital at 12pm. I'm concerned I'm going to be exhausted by the time we get to the hospital and then have to manage a clinic (which hopefully won't go as badly as last time), a blood test, an ultrasound scan and possibly a psychologist appointment before the 3 hour journey home! :(

I didn't hear from R for a couple of days last week, so got a bit worried, but then I got a lovely message saying she'd received my parcel and loved it :D And she seems to be managing well in hospital, despite a couple of bad experiences.

Jess is home again, but is still in desperate need of a transplant. The Save Jess campaign is still going strong.

K is a lovely 5 year old girl who received a transplant like mine when she was just 11 months old. I've blogged about her a bit recently because she's been in and out of hospital with bowel problems which has resulted in her being listed for a second transplant, but with more organs this time. K has bounced back many times from being seriously ill, so I know what a fighter she is. But currently K is more ill than she's ever been before and things aren't looking good. She's got swine flu which has severely attacked her lungs and has left her fighting for her life. If you pray, please pray for K. If not please send her healing vibes or just keep K and her family in your thoughts at this awful time. Keep fighting K.

An up and down week

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

An update

Sorry I've not written a proper update for a while. I've really been struggling with my tiredness over the last week and a bit; I've just been feeling exhausted all the time. I tend to explain my health as having good days and bad days - during the Easter holidays though I'd say I've only had bad days. I'm really really fed up with it now as it's preventing me doing so much and I just want to get on with my life. My exams are due to start in just less than 3 weeks and I don't know what to do because I can't manage to do any revision (as well as feeling tired, my memory is rubbish, I can't concentrate and when I read I can't take anything in) and I know I won't be up to taking the exams. I've been talking about it with my parents a lot this week and also to my good friend Claire. I can't make any firm deicisions til I've spoken to Mrs K when I go back to school on Monday, but I think I might try to sit the exams for maybe 2 of my 5 subjects next month and then depending how my health goes, either sit the others in November or May or just leave with 2 International Baccalaureate certificates. I want to sit my 2 Japanese exams next month as that's my favourite subject, but haven't decided what other subject I might take yet. This week I've been doing nothing really, as I just don't have the energy to do anything more than watch TV, surf the Internet... I'm also beginning to have difficulty sleeping, some nights now it takes me over an hour to get to sleep and last night I woke up in the middle of the night and couldn't get back to sleep. Sometimes I try going back to bed during the day, but when I get up again I'm just as tired as I was before. I heard from my GP, Dr I, last Wednesday and he said that all my blood test results had come back clear, so he's now sent off the referral to the CFS unit. Hopefully it won't be too long til I receive an appointment, but I expect it will be a couple of months.

I've tried to do a few things this week though despite being so tired. I babysat for H on Thursday which was fine, as she's no trouble at all and it wasn't for too long. I went to the theatre on Saturday night with my family. The play was fantastic and very clever, though I was very tired throughout the performance. My friend Claire came round yesterday and we watched a film together and chatted for ages, so that was nice. And today my best friend, Lizzy, rang me and it was lovely to speak to her as I've not spoken to her for a while. That really cheered me up, so we're trying to arrange meeting up sometime soon :D

And very excitingly, my tickets for the Pink concert arrived in the post on Saturday. I can't believe the concert is on Friday - just 3 days to go! I'm sooooo excited :D I really hope I'm not too tired on Friday though.

I think I'd mentioned in previous posts that I'd ordered Taylor Swift's first album from America and was eagerly awaiting it in the post. Last week I received an email from Amazon saying that the marketplace seller I'd ordered it from had stopped trading with Amazon and if I hadn't received the album then it looked unlikely that I'd receive it. I filed a claim and got my money back, but I'm disappointed that I never got the CD. I've been looking around on the Internet for somewhere else to buy it from, but I'm quite wary of using Amazon Marketplace again after that experience, but the other option would be to order it from a website I've never heard of. So I've not ordered another copy yet, as I'm still thinking about it.

I've been watching lots of TV this week as I've not been able to do much else. I watched The Apprentice on Wednesday, which I really enjoyed. Usually I like a couple of contestants each year, but this time they all seem horrible characters! I was surprised that Majid went out this week, I really thought James should have gone after being in the boardroom twice in a row. I also watched the Doctor Who Easter special on Saturday. I really like David Tennant and am not looking forward to a new doctor next year. After all the hype I expected Planet of the Dead to be amazing, but it wasn't. I thought it was good, but not as good as I expected. On TV this week I'm watching a series called Lifegivers which is on BBC1 every morning from 9am til 9.45am. It's all about blood and organ donation and I think it's really well made. I hope it raises awareness of the need for organ donors, though I think it's a shame that it's not in a prime time slot. Have a look if you can and let me know what you think. I can't wait for the return of Ashes to Ashes next Monday :D

Last Tuesday when I weighed myself I was really disappointed to find that my weight had dropped. I emailed my dietician to let her know and received a reply saying she was quite concerned. However, when I weighed myself again this morning I was relieved to find that I'd not lost any more weight :) So I'm waiting to hear from my dietician to find out what the plan is, as I know I'm still quite a way under my ideal weight.

Tiredness and trying to cope with it

Sorry I've not managed to write a proper update for a week. I'm going to apologise in advance for the length of this post as I imagine it'll be another long one - sorry.

Last Friday I didn't make it to the cinema as the showing we had planned to go to would have finished later than Alf finished school, so we couldn't go as mum couldn't arrange for anyone else to pick him up. Because we didn't go to the cinema we also didn't go into town, as we'd planned to do that on the way. But we still wanted to go out, so instead we went out for lunch to the Bistro where my older brother works. I'd not been since he'd started working there, so it was nice to see what changes they'd made and to see my brother enjoying his job. And the food was yummy too! Then Friday evening my friend Claire came round and we had a great night watching Comic Relief :D I watched it from 7pm til midnight and then recorded the last 3 hours after I went up to bed. The highlights for me were French and Saunders doing Mamma Mia, which I thought was fantastic and really funny, and Comic Relief does The Apprentice. I love The Apprentice and can't wait for the new series to start again next Wednesday.

Writing about TV has just reminded me that I mentioned 'Deborah 13: Servant of God' in my last post. Thanks for your opinions Jessica and Becky. I'll write another post soon with my views, as I don't want to make this post even longer!

Over the weekend I didn't manage to do much because I was really tired. I also felt very fed up as my tiredness is so frustrating and has been going on for 8 months now (since last July) and I still don't have any answers. And I'm struggling to keep up at school and am concerned about my looming exams, as I'm always so tired and am now struggling to concentrate. So I spoke to my parents and we made a bit of a plan. My consultant at hospital A, Dr W, had suggested at my clinic in January that he thought it could be chronic fatigue syndrome (CFS). So I emailed him last weekend and asked if it would be possible to have a referral to a specialist for a diagnosis. If it is CFS, then I might be able to get some support and coping strategies, and if it turns out that it isn't CFS, then I can chase up my consultants to find out what it is. I've not had a response from Dr W yet though.

On Monday I spoke to Mrs K (the deputy head of sixth form), as she's always been a great support to me, and arranged to have a meeting with her on Tuesday lunch time. She's very supportive and helpful, but I got the impression from our meeting that she doesn't really understand how I'm feeling. But we came up with a few ideas. We came up with a schedule for getting on top of my work (preparing for my Japanese oral til Friday, then making a revision timetable and beginning revision at the weekend as the exams are looming - they begin 1st May!) and after Mrs K saw that my timetable for the next day was relatively empty (only 2 lessons), she suggested I have the day off to work on my Japanese oral and hopefully get some energy back for the end of the week. And because I'm struggling to concentrate in lessons, but especially in double lessons (which are 2 hours long), she suggested that I try having a short break every 20mins in double lessons to see if it refreshes my concentration.

I managed to prepare for my Japanese oral successfully this week and had it today. It wasn't a disaster, but could have been better. I'm relieved it's over now though and am just trying to forget about it now as there's nothing more I can do. This week I've got some homework, but am hoping to start revision - as long as I'm not feeling too tired. Having Wednesday off worked well and I had a really good day when I got back to school yesterday, but then didn't feel very good today - probably partly as a result of doing too much yesterday! Despite being exhausted and having stomach ache today I managed the whole day and am now glad it's the weekend. I hope I can get some answers to my tiredness soon as it's really frustrating and I'm concerned about missing so much school. And I've not put the new plan for coping with double lessons into practise yet, but will do on Monday.

This week at school as well as trying to keep up with school work, I've also been doing some bits for the school yearbook. I'm part of the group who've been producing it, there are about 6 of us. The deadline for sending it off to the publishers is this weekend, so this week has been quite hectic! Me and my friend Catherine produced a montage page of the best of the Japan photos to be included in the yearbook. So it was nice to look through all the photos, it brought back lots of memories. I promise some photos will be put up on here soon.

On Wednesday evening I babysat for H, the 10 year old girl I often sit for. It was from 7.30 til about 10.15, so I took one of my Wii games for H to play and then a book to read once she went to bed. But her mum let her stay up til she returned, so the evening wasn't as relaxing as I expected! But I had a nice time watching H on the Wii, as she really liked the game I lent her. And I gave her a couple of gifts I'd got her from Japan - some chopsticks and a fan. I was quite tired by 9/10pm, but H was hyper, I don't know where she got her energy from!

This week my weight was about the same as last week, but it's still a bit under my target weight. So the plan is for me to try some high calorie drinks to get my weight up a bit. My appetite hasn't been very good over the last couple of weeks, but I think it's probably just because I've not been feeling very well in myself. Next Wednesday I'm speaking at the study day at hospital B, so I'll see my dietician there. I'm also going to chat to her about the British Transplant Games as she's my hospital's team leader. I received the information pack and application forms through the post this week and they look very complicated, so I've got a few questions for her about them. I'm really looking forward to speaking at the study day next week, as I love doing things like that. I've almost finished planning my speech and am going to find some photos to go with it this weekend.

This evening I'm just planning to relax as I'm so tired. My friend Claire was going to come round this evening, but she couldn't make it as her dad is ill, so she's going home to see him this weekend. Over the weekend I don't have many plans, but will probably spend some time with my mum and nan on Sunday because it's Mothers' Day. And I've got some school work to do. Tomorrow evening me and my family are planning to go to the theatre, so I'm looking forward to that :)

Busy

I just wanted to post a quick update this evening to let you know that I'm still planning to update this blog as regularly as I can, so please keep reading :)

School has been really hectic this week which is why it's been a while since I last posted. I've got a big English coursework essay due in tomorrow and then a scary Japanese group oral exam on Thursday, so I've been working on those this week. I've got a busy few days coming up as tomorrow I've got a hospital appointment (I'll update you on how it goes) and I'm going to the opticians. Then on Thursday I've got my Japanese exam and that night I'm going to the theatre (to see Hamlet with my English class). So it may be the weekend before I can post again.

I've got lots of plans for my upcoming posts when I get some free time. I'm going to summarise my medical history, explain the qualification I'm taking at school (I'm in 6th form, but I'm not doing A Levels) and tell you all about my exciting trip to Japan that's fast approaching :D Plus lots more.