Bits and pieces

As I said in my last blog update, I tried to upload some photos, but was very puzzled as to why I couldn't. The next morning I discovered that Alf was downloading some huge game for his computer from the Internet. It finally finished downloading last night!

So I've taken some better photos in the daylight to share with you and now I can upload them :) This is my new watch:
And this is the bracelet I also bought on Wednesday:

I forgot to mention on my last blog update that Chris and Sophie will be able to rent the cottage that they liked. I think they're planning to move in at the start of March.

I think I must have had some kind of virus or something last week as I felt really rotten from Mon til Thur. My last blog update covered til Wed, but then on Thur I felt even worse. I had been planning to go out to visit my Nan with mum, but I felt awful, so while mum went out, I just lay on the sofa instead. I wasn't planning to sleep, just rest, but I did nod off. I was woken by the phone 10mins later though! It was my mum's boss, but she wouldn't leave me a message, she said she'd phone back later.

On Thur eve my mum's boss did phone back. Because of budgets and trying to save money, 3 village libraries in our county are going to be closed (I think there are thirty something libraries in total). My mum's boss who is relatively new to the library was very worried by this. But my mum has worked in the library for a while and has known this to happen twice before. Last time our library wasn't one of the ones they were considering closing, but when it was the previous time the whole village went up in arms so they decided against closing it! My mum doesn't think that our library is likely to be closed, but even if they suggest it she wont be worried because she knows the power of the villagers. Her boss is still worried though.

On Friday I felt loads better and have since then so I think I must be over whatever virus or bug I had. I'm still very tired though because I've been more nocturnal than usual this last week, getting to sleep between 2am and 3am most nights. And I try to get up at a reasonable time (before 11am) each day, so think I might be a bit short of sleep. If I get into bed earlier I fall asleep earlier, but if I do then I miss the period where I feel well which is usually between about 11pm and 2am. And I don't like to do that. And I'm still getting the tummy pains, but hopefully my dietician will have some suggestions when we're in contact on Tue as I gave her my diary last week, and more headaches than usual. And I'm constantly cold.

On Friday evening Claire came round :) We did lots of chatting, I showed her some music videos I'd recorded for her, Claire did some knitting with mum and we had great fun together on New Super Mario Bros Wii :D When I was putting my CV together this week I'd discovered that I don't have some GCSE certificates from my secondary school, so Claire is going to chase them up for me. She also had a look at my CV and suggested that as well as the one paid job I've had, I should also include all the voluntary stuff I've done. So I've added that in and am now ready for my Pathways to Work appointment about my CV tomorrow. Tomorrow as we're going into town anyway, we're going to call in at Hosp H on the way there or the way back because I need bloods doing. And we'll do my Tac blood at home in the morning via a fingerprick and post that off to Hosp B.

And me, mum and Claire decided that we're going to go to the cinema on Wed to see Meryl Streep's latest film - It's Complicated. We suspect that we might confuse the cinema staff though because Claire will have her Orange Wednesday's offer (buy one get one free) and I'll have my CEA cinema card (which allows someone to accompany me for free), so we're hoping we'll just have to pay for one ticket between the 3 of us (if Claire buys her ticket and gets mine free with Orange Wednesday, then I should be able to get mum a free ticket to accompany me), fingers crossed! And the following Wed mum and Claire want to see George Cluney's new film - Up In The Air, but I've not decided yet if I want to see it or not.

Over the last few days I've been writing a letter to my penpal (Lizzy's husband's niece) who is 17 and lives in Myanmar. I finished that this morning so am hoping to post that off tomorrow.

I received the identity documents (passport, birth certificate and national insurance card) that I posted off for my CRB check back in the post yesterday. I was a bit worried about posting them off, but am relieved they arrived back ok via recorded delivery. The reason I've no faith in the Royal Mail at the moment is that they've lost a parcel one of my sixth form friends posted me about 3 weeks ago (it was a late Christmas present). I've seen no sign of it yet :( So she's going to see if she can trace it because she's got a receipt to prove that she did post it. Fingers crossed.

I tend to stick with eating the foods that I like, especially for lunch - I always eat Marmite sandwiches. But when we ate out at the cafe on Wed I discovered that I quite like toasted teacakes :) So I had them for lunch yesterday instead of my usual Marmite sandwiches.

Yesterday I persuaded dad to play on my Wii with me and we had great fun on Wii Sports Resort. I beat him at archery and thrashed him at swordplay, but he beat me at golf (how boring!) and cycling, which is the most exhausting sport on there! And yesterday I also had a go on New Super Mario Bros Wii by myself but I'm stuck, it's too hard for me. I might have to see if I can persuade Alf to help me ;)

Sometimes the Radio Times have really good offers. I mentioned the offer for the exclusive Doctor Who book in my last update. In one of the recent issues they offered a free Lonely Planet magazine to readers or 3 Lonely Planet magazines for just £1. So I phoned up and requested the 3 magazines for just £1. I've never read the magazine before, but would love to travel more, so hopefully I'll find it interesting.

The other day I was wondering about how the audiences for TV programmes (such as QI) are assembled, so I had a look on the Internet and found Applause Store. I've signed up and been placed on the reserve list for tickets for QI, Never Mind the Buzzcocks and The X Factor. So hopefully they'll notify me when the filming dates are released and if I'm quick I might be able to get tickets to be in the audience, fingers crossed.

I've just discovered a great website called DVD Spot which searches online retailers to find the best DVD prices for you :) What a good idea, it will prevent me searching lots of different websites. They don't check Tesco which is one of the websites I usually check, but they check all the other reasonably priced ones I know.

I was listening to my iPod this afternoon and didn't know what else to do with myself. I'm not very good at just listening to music. So I played Solitaire on my iPod as I often do and then rediscovered another game on it called Vortex which I'd not played recently. It's quite addictive :P Does anyone reading this remember the Superplexus, a puzzle toy that was released a few years ago now? I still have mine and so tried that again this morning. I thought I'd find it easier now I'm older, but I still can't complete it. Grrrr :P

I've not managed to finish my 101 in 1001 list yet, I'm still short on some goals. I've got about 90 at the moment, so hopefully it wont be too long til I complete my list. I'll post it up when it's finished.

I've said before that I currently really like a song called Fireflies by Owl City. Hopefully it'll be number one in the chart tonight, fingers crossed. This is Boyzone's new single, Gave It Away. I'm not really a Boyzone fan, but you might be surprised to know that this song was written by Mika. To me it sounds nothing like Mika's music, but that shows what a versatile songwriter he is.

Today I've been listening to lots of music - I'm currently listening to Alexandra Burke's Overcome album, but I've already listened to Pink's Funhouse album, Pixie Lott's Turn It Up album, and Mika's The Boy Who Knew Too Much album :D Today it is 5 weeks til I'm seeing Mika in concert again, yay! This afternoon me and H have been texting each other about it because we're both so excited. If we're this excited with 5 weeks to go I don't know what we'll be like nearer the time! H has seen him in concert once before and is also a huge fan, so it should be great seeing him together (and my mum will be coming too). I invited H to come to the first concert I saw him at with me, but she was away, so 2 years later we're doing it :) And in less than 5 weeks me and mum are seeing The Noisettes in concert. You can see their new single, Saturday Night, here.

I'm really pleased that Sandra Bullock has been winning a few awards recently. I think she's a great actress, but never really seems to get the recognition I think she deserves. But recently she's won a Critics Choice award and then yesterday she won a Golden Globe. Both of these awards were for her as an actress in a film called The Blind Side. It's only been released in the USA so far, but should come to cinemas here in March.

On TV since my last update I've watched the 2 latest episodes of QI, Thur's episode of The One Show (because it had a feature on dyscalculia in it which is what my mum has), The World's Biggest Family and Me on C4, Brits Hits 30 and Horizon: Pill Poppers. And I recorded the Hope For Haiti concert, but haven't watched it yet.

On Thur I found out that Ashes to Ashes series 3 will be televised this spring and some sources suggested it might start next month. I loved Life on Mars and I also really like Ashes to Ashes. But I can't really remember what had happened in Ashes to Ashes series 1 and 2, so I'm going to attempt to rewatch them before series 3 is televised. I'd already got series 1 on DVD and I bought series 2 from Tesco online on Thur, so hopefully that will come in the post soon. I watched the first episode of the first series yesterday and followed it better than I expected. It seemed like much longer than an hour in length though. I'm going to try to watch the second episode at some point today.

Since my last update I have also finished watching all the episodes of Gavin and Stacey. I think we've watched them all in about 3 weeks! :D We bought series 1, borrowed series 2 and 3 from the library and rented the Christmas special from Tesco DVD rental. So since my last update we watched the Christmas special and watched the extra features from that DVD and from the series 3 DVD. And I've joined all the groups on Facebook campaigning for another series! :P

I also watched Absolutely Fabulous The Last Shout (and the extra features) which I rented from Tesco DVD rental. So over the last few months I've also watched every single episode of Absolutely Fabulous which has been released on DVD (series 1 to 6, Gay and The Last Shout) without buying a single one - all rented from Tesco or borrowed from the library! I'm going to buy the complete collection (Absolutely Fabulous Absolutely Everything) though when that comes out in Oct. And hopefully that'll include the last ever episode, The White Box, too as that hasn't been released on DVD in the UK yet - but the USA have it despite it being an English programme!

And I've watched 2 more full Vicar of Dibley episodes, 2 short Comic Relief episodes and some extra features from my boxset. I've only got one episode left and then I'll have watched them all. I think I might watch that tonight when I'm nocturnal :P

18 months

Today marks 18 months since both my stoma reversal and me developing ME. It seems like I've been without a stoma for much more than 18 months, but it seems like I've not had ME that long. Weird. Mum was surprised it is just a year and a half since I developed ME though, she thought it was 2 and a half years, but she does have dyscalculia - number dyslexia. Getting my stoma reversed was such a great moment for me and something I'd been looking forward to since I discovered that I would need one temporarily at the first meeting at Hosp B before my transplant. But obviously I didn't realise at the time that that operation would somehow lead to me developing ME.

Busy busy busy

I have a feeling before I even start writing this that it might be a long update. So sorry in advance for that.

I had planned to have a quieter and more relaxing week this week, but that hasn't happened as I've continued to do too much :P On Mon afternoon I had a hygienist appt as Hosp A. That went smoothly, including the journey which only took 40mins, we usually leave an hour and 15mins for it! Each time I see the hygienist she gives me a score of what percentage of my mouth is dirty. The first time I saw her before I got braces my mouth was 35%, last Sept it was just 18% and on Mon it was just 12%, so she was happy with me :)

Then on Mon evening F called round (unexpectedly, she just phoned up 10mins before and asked if I was free) to exhange Christmas presents and for a chat. I gave her an incense gift box which she loved and she gave me this lovely glass dolphin ornament.


It was nice to catch up with all her news, but I can't believe how busy she is - she attends college where she does a music course 3 days a week, works at a secondary school teaching music 2 days a week and works in a music shop on Saturday! Phew! So I guess I can understand a bit better now why she had to cancel on me twice previously. It's always tricky to get friends to go when I'm exhausted, I need to learn to be more assertive there I think, so she stayed for about an hour and I was tired to start with! But it was nice to see her :)

Yesterday I had no plans, but wrote myself a huge to-do list in the morning and spent most of the day working through that. I phoned up a special phone number in the Radio Times to order 2 Doctor Who souvenier books of the David Tennant and Russel T Davis years (one for me and one for Claire for her birthday in April), phoned the dentist to make myself an appt (because I wasn't able to make my last one), filled out a sociology questionnaire to help a friend with her coursework, filled out my CRB check form so I can become a regional contact for AYME, went to the shop to buy a Radio Times, started to write a letter to my penpal in Myanmar (Lizzy's husband's niece), replied to various emails, phoned the GP surgery pharmacy to chase up the high calorie puddings I'd ordered, emailed my dietician to let her know that the surgery couldn't get the puddings in for me, send her my food and symptom diary and let her know my weight...

My weight yesterday was 51.2kg. So I emailed my dietician to let her know that in the morning because we'd previously agreed that once I reached 51kg I could try without overnight feeds and see how my weight went with just normal eating and high calorie supplements. But in response to my email my dietician suggested seeing if my weight was still above 51kg in a week's time and then dropping my feed down to 2 nights a week! I was sure that wasn't what we'd previously said so emailed her back. She then replied and said that she was emailing me from home, so because she didn't have my notes she'd forgotten what we had agreed. But she said that I could drop feeds completely if I was confident that my tummy pains wouldn't stop me eating enough to maintain my weight. So now I'm having doubts. Yesterday the local pharmacy told me that they couldn't get the high calorie puddings in for me. So yesterday I had a Fortisip drink that really didn't agree with me (even drinking it diluted with cow's milk and very slowly), so I'm not having one of those again. My dietician couldn't understand why the pharmacy couldn't get the puddings for me, so said she'd chase them up. She also suggested staying on the same feed plan this week and then reviewing it next week as hopefully the high calorie puddings would be sorted by then. So I'm still on feeds for now. I know it might not be for much longer, but I'm not feeling as optimistic now about getting off them as I had been previously. However this morning the pharmacy rang and they've sorted the puddings so we picked the first batch up today :)

Yesterday evening I felt awful. I was completely exhausted and had a headache. And on top of that I felt really fed up and depressed. It wasn't anything in particular, just a mixture of things (with the discussion with my dietician about my feeds being the last straw) all made worse by complete exhaustion.

Recently I've heard some more news on Imy. She's now about 3 weeks post transplant. She is well enough to stay in a hospital flat (which is 10mins away from the hospital) every night, only returning to the ward to see the doctors and have bloods taken each day. And the rest of the time is her own. And she's now been off TPN and enteral feeds (so is just sustaining her weight via normal eating) for over a week. I'm really pleased for her, but as awful as I feel saying this, I'm jealous. I feel like she's made more progress in 3 weeks than I have in over 3 years. 3 weeks after my transplant I was really ill, returning to theatre every other day, completely out of it with the huge amounts of Morphine I was on... Yet 3 weeks after her transplant Imy seems fine and doesn't even need to stay in hospital any more. And I'm still on artificial feeds because my eating isn't at normal levels yet, but Imy doesn't need artificial feeds any more. I hate myself for feeling like this, but I do. And that is partly what contributed to me feeling so down last night. I just want to be normal and being normal isn't being on overnight feeds or having ME. My health relating to my ME is declining, but I know it's because I do too much. I need to learn to pace, but it's so hard. Smaller things are now leaving me more exhausted than they have before.

The news on M is also good. She's had a brilliant week, her mum said it couldn't have gone any better. She's been back on the ward for over a week now, her remaining bowel has stopped bleeding and is working a little, she's in less pain so her major pain relief is being reduced and she is much brighter - sitting up in bed, playing and colouring :)

Because I was feeling so rough yesterday evening I got into bed at 10am and was asleep shortly afterwards. I didn't get up til 10.30am this morning, so had loads of sleep last night. It was a bit disturbed from 7am though when the rest of my family got up. I've felt in much better spirits today and have been more cheerful. I've not felt refreshed by the sleep though and have still been very tired (although probably not quite as exhausted as yesterday) and have had a headache again. And my teeth have been sore today, but I'm not quite sure why. I suppose it's probably just because my braces have been moving my teeth.

I went to the post office this morning to post off my completed CRB check form and some identity documents via recorded delivery. I know that my CRB check could take a while to be processed, but I'm getting closer to becoming an AYME regional contact :) And I went to the surgery to pick up my high calorie puddings and on the book stall there was a big book about films (RadioTimes Guide To Films - 2004 edition) for just 50p!

Today me and mum went to a local craft shop. It's connected to a place which has loads of birds of prey that they look after and fly in flying displays, but we didn't visit that today. In the craft shop mum bought 2 balls of wool to knit dad some wristwarmers. I bought a watch from there last year but when it came to changing the clocks last Oct I discovered that I couldn't change the time on it. So I took my old watch back today and although I didn't have a receipt I was allowed to swap it for a new one :) My old watch was black, but there weren't any more black ones, so I had to buy one which is a bit brighter. I also bought a pretty bracelet for my cousin Tam's birthday in Feb and a beautiful bracelet for me :) I wanted to post up some photos of my new watch and bracelet, but I can't get them to upload at the moment, so they'll hopefully come with my next blog post.

And then we had some yummy toasted teacakes in the cafe, it was the first time I'd tried them :) On the way home we spotted some funny sights. It's really flat around where we live, so both me and mum couldn't understand it when we saw a proper signpost for a local village mountain rescue! We also saw what looked like a bird of prey sitting in a field, which we assume must have escaped and then we saw a pet cat sitting at the edge of another field. Not sights you see everyday! :P

My dad is away tonight with work, but it feels really odd because he's always here. However I did speak to him on the phone this evening :) He can be very annoying at times, he attempted to sign up to Facebook this week just to annoy me. He quickly gave up though as it was too technological for him, hehe.

If I feel up to it tomorrow I might go and visit my Nan and then on Fri eve Claire is coming round :) I'll try not to overdo it as much on the Wii this week though :P

As you may know from past blog entries I love Pixar films. I've just recently discovered that they have produced art books about the art of their films, which are titled 'The Art Of...' So I enjoyed looking at those on Amazon the other night. They are all quite expensive though.

A little while ago the Daily Mail put up a poll on their website asking people to vote on whether ME is a genuine illness or not. I wasn't happy and it really upset some of my friends with ME. The Daily Mail wouldn't have done that with any other illness. So lots of people complained and the Daily Mail apologised :) That doesn't make it right though, they shouldn't have published the poll in the first place. If you're interested you can see a copy of the email that people who complained received here on a blog I follow from an ME sufferer.

Scotland have just produced and launched an organ donation teaching resource pack which will be distrubuted across schools in Scotland so that pupils can learn about organ donation. I think it is a fantastic project and can't understand why we haven't got the same in England. You can view the actual video that is in the pack here, you can read the press release here and you can read a BBC news article on it here. I know Aaron and his family well and I have spoken to Rachel's family on online transplant forums.

Thanks to everyone who read and commented on my last blog update about my new challenge, 101 in 1001. If you've not read that post yet, you can see it here. And hello Kate :) I'm still working on my list and currently have just over 80 possibilities for it, so I need to try to come up with some more. Any ideas would be appreciated. When I've finished I'll post my list up here as well as on the official Day Zero website.

I know it's not important in the grand scheme of things, but I am intrigued as to whether one of my regular blog readers left the anonymous comment on this blog post, or whether it was from someone who doesn't usually comment. So if it was you who left the comment and you feel like letting me know, then please do :)

On Sun evening I sat down with my parents and we watched the whole series 3 of Gavin and Stacey in one sitting. Probably not sensible, but very enjoyable :P And since my last update we also watched the special features on that DVD and I've watched another Vicar of Dibley episode.

On TV I've watched the Brits Launch Party (which featured some great performances from Ellie Goulding and Pixie Lott), Nurse Jackie, a Victoria Wood programme with mum which went behind the scenes of her 2009 Christmas special, 2 Film 2010s (from which I've decided I don't want to see anything in the cinema at the moment, but might want to see some films towards the end of this month and next month) and some of the music channels, where I saw this music video from Erik Hassle (he's not too bad, but I don't get his appeal) and a programme about the Saturdays (I like most of their music, but every single time I've seen them perform on TV they've mimed!). And tonight I watched some of the National Television Awards. I got bored part way through though because they were doing too much about soaps, so I didn't finish watching it. But I was pleased that Gavin and Stacey won their award and Doctor Who won its award. I liked Joe McElderry's performance, but turned it off before Jedward's performance so didn't have to watch that, phew!

I was disappointed that Fireflies by Owl City didn't top the chart on Sun, it only reached number 2 in the Official UK Top 40. I bought it yesterday though because I forgot to before Sun. I was disappointed to read in an interview that Alexandra Burke wont be touring this year :( I love her album and have listened to it through while writing this update. It's taken me so long that I'm Pixie Lott's album now though because that finished :P Anyway, hopefully Alexandra Burke will tour in 2011, but that seems a long time to wait. A website called Popjustice reviewed Diana Vicker's upcoming debut album which I thought was interesting because I loved her on the X Factor and have been looking forward to the release of her album. If you're interested, you can read the review here.

A new challenge

I've heard Emma talk about something called 101 in 1001 on her blog before, so I asked her a bit more about what it is and she's explained it in her latest blog post here. You create a list of 101 goals and have 1001 days (which is about 2.75 years) to complete them. It intrigued me, so I visited the website for it - Day Zero. After reading Emma's lists and some other people's lists I found on the Internet I decided that I'm going to give it a go to try to make my life a bit more productive. I started making my list tonight, but am struggling a bit with it because I'm worried about making some goals (such as ones that involve travelling abroad), because I don't know how my health is going to be over the next 2 and a bit years (1001 days). I'm leaving my list for the night now and it currently has 62 goals in it. From reading my blog do you have any suggestions for goals I could set myself? Thanks. Once I've completed my list I'll post it here and then I also hope to blog about each goal that I complete.

Seeing friends and listening to music

As the title of this blog update suggests, I've seen some friends over the last few days. On Wed eve Claire came round after she'd finished work and we went to the cinema together to see St Trinians 2. We both thought it was better than the first film - the plot was stronger, the soundtrack was great and David Tennant was in it too. We had a great time and the film was fun :) And Claire popped in for a drink after the cinema. On Thur afternoon an old friend popped round. Sarah lives just across the road and we used to be very good friends when we were younger. But as we grew up we grew apart. She's away at uni a lot now and we don't have much in common, but it's nice to catch up with her every so often. On Fri eve Claire came round again. She stayed for tea, we chatted a bit and we had great fun playing on New Super Mario Bros Wii together :D

And yesterday mum was feeling well enough for us to go to Lizzy's. Mum wanted to come back before it got dark, so because it's an hour and a half drive that meant we'd need to leave about 3pm. So to spend a decent amount of time with them I got up at 8am yesterday morning (which is very early for me) so we could set off not too late. I was ready to leave the house at 9am, but mum wasn't feeling great, so we left just after 9.30am. On the way we stopped for petrol, so we got to Lizzy's at about 11.20am. Lizzy's husband H soon had to go out to work, so for most of the time it was just me, mum, Lizzy and M. We chatted loads, gave M her Christmas presents, had some lunch there and were very well amused by M. She's 3 years and 8 months old now and soooo cute. She'd just recently learnt to play I Spy so we all played that with her. And she loves dancing and ballet so she enjoyed dancing for us. And she likes to rhyme everything and if she can't think of a rhyming word then she'll just make one up. I was exhausted yesterday and didn't have much energy at all, but Lizzy understood, so it was ok. I was disappointed that I couldn't play with M more though.

H is from Burma, so Lizzy and H are trying to teach M about the Flan (Burmese) culture as well as the English culture. H's first language is Chin and although M understands when he speaks it to her, she wont speak it herself, she'll only speak English. And her parents are trying to teach M both Flan eating good manners and English eating good manners, but the 2 ways of eating are very different - the Flan way of eating is with your hands - so M often gets confused about how she should eat. Yesterday for lunch we had baked potatoes with chilli which M ate with her hands. That made quite a mess! :P And then she tried to eat a slice of cake with a spoon. We headed home at 3.15pm and I fell asleep in the car for a bit because I was so tired. I was awake though when there was a muntjac deer standing at the side of the road - wow! We stopped for drinks (because mum was very tired) and then got stuck at the local level crossing for 5 trains, so didn't get home til about 5.15pm.

I love seeing friends, but like doing anything does, it results in me being exhausted and I have been most days this week :( I've also been stupidly nocturnal, getting to sleep about 2am most nights :P Usually I can remain positive even when I'm feeling exhausted and rubbish, but I am struggling with feeling a bit down today.

I've managed to do a few productive things since my last blog update - I started putting together a draft CV for Pathways to Work but need to do a bit more work on it over the next week, I went to the surgery to order some of the new Fortisip desserts I've tried and got on with ok, I went to the shop/post office to buy the latest Radio Times and post a letter, I've got my spreadsheet which I record all my income and spending on almost up to date (I just need to work out how to fix some broken formulae) and I sorted out my overflowing in-tray on my desk.

I'm still keeping my food and symptom diary, but will finish it this evening. My tummy pains have been worse since Thur (which may have been because I had a Fortisip drink) which is frustrating, but at least I can record something in the diary!

On Wed my watch broke. I got it from Chris for my 16th birthday and had worn it most of the time since then, so it had done well. But on Wed as I took it off the strap just snapped off from the watch face. Dad says it's not repairable. I bought a lovely watch at some point last year from a local craft shop which was made out of coconut shell. That worked well for a few months, but then when it came to the clocks going back we discovered that the knob to change the time wouldn't work. Dad tried and managed to change the time to something odd, but then couldn't change it again. So that watch was then useless. After my watch broke on Wed I felt really lost without one so have borrowed an old wind up one from Mum for the time being. At some point this week though I'm hoping to return to the craft shop where I bought my coconut shell watch from and see if they've got one with a knob that works, fingers crossed.

My Nan finally got home on Thursday after 5 and a half weeks in hospital. I've not been to see her at home yet, but dad visited her on Fri and is going again this afternoon. I've spoken to her on the phone though. She seems ok in herself, but on Fri morn she had a dizzy spell which is a bit of a concern as that's why she was admitted to hospital in the first place. Hopefully they'll get better with time or wont be as bad now, fingers crossed.

I spoke to M's mum on Facebook chat on Wed. M had just got back on to the ward from ICU and was a lot brighter in herself :) I've not heard any more about Imy recently so am going to text her mum and ask how she is.

I posted this blog update a couple of days ago which I've since been adding to since which has links to friends' blog posts in memory of Jess.

On Thursday I discovered that Lou has written a story for the BBC's My Story competition. It's definitely worth a read. You can find it here.

On Thur my monthly Official Nintendo Magazine arrived in the post, so I enjoyed reading that.

Since my last blog update I've just watched 2 films - Madagascar 2 and Be Kind Rewind, which were both funny and I enjoyed watching them, but they weren't anything special.

And on DVD I've watched the final 3 episodes of the second series of Gavin and Stacey plus the special features, one and a half episodes of The Vicar of Dibley and some S Club 7 music videos from a DVD I rented called S Club 7 Best.

On TV I've watched quite a bit of rubbish when I've been nocturnal and bored including Krypton Factor, Half Ton Man, World's Strongest Child and Women Who Kill. I also watched another episode of Tracy Beaker Returns, but according to iPlayer it was the 3rd episode which was televised before the 2nd! :P I tried watching a new ITV programme on Fri night called Popstar to Operstar, but I know nothing about opera so until the judges spoke I had no idea whether each contestant was any good or not, lol. And I watched Friday Night With Jonathan Ross which featured Catherine Tate and Pixie Lott performed too.

I've watched the music channels again because music videos are easy to watch when I'm tired. I also watched an old episode of Live From Abbey Road which featured Michael Buble (who mum likes) and Little Boots (who we both like) and 3 old Jools Holland programmes featuring Norah Jones and Corrine Bailey Ray (who mum likes) and Joss Stone (who we both like a bit). They also contained some stuff dad was interested in too.

I listened to an Ellie Goulding interview on Radio 2 on iPlayer, read this very good article about her in the Independent and listened to some of her music on Youtube. In the Independent article and in the Radio 2 interview she mentions Erik Hassle, who was another support artist for Little Boots when we saw her. None of us were keen on him or his music, so me and Claire think we might be missing something with Ellie Goulding singing his praises and Radio 1 playing his music! You can hear his next single here - what do you think? And this is a single that Ellie Goulding and Erik Hassle covered together.

On Youtube I also watched JLS' new music video for One Shot and a found a clip of Shingai from the Noisettes performing on Jools' Annual Hootenanny. I saw it on TV, but if you missed it you can watch it here. The Noisettes should be good live next month :) And I found this tiny teaser clip of Diana Vickers' (who came 3rd on X Factor 2008) debut single Once, which will be released in April.

I've been listening to Alexandra Burke's Overcome album more, which I still love. And I've listened to Rihanna's latest album Rated R and Cheryl Cole's album 3 Words on Spotify. Rated R isn't unpleasant, but isn't something I'd listen to again, despite liking Russian Roulette. But I thought that 3 Words was horrible and was a huge disappointment! I like Fight For This Love, but dont like the single 3 Words, so was hoping the album would be more in the style of Fight For This Love - but it isn't. Most of the songs are similar in style to 3 Words and Will.i.am features on a lot of them. Some are just about bearable, but some I hated, especially Boy Like You which samples a fantastic Fleetwood Mac song (Little Lies) then ruins it with Cheryl attempting to rap! There was one song on the album apart from Fight For This Love which I didn't mind and it's called Parachute. I might listen to those 2 tracks again but not the rest of the album. I'm glad Parachute will be her next single.

And Siiren is a Fairtrade website that Catherine's mum told me about when they came the other week, but I've only had chance to look at recently. Catherine's mum recommended it because we were commenting on her pretty necklace that she'd bought from there. They sell some lovely Fairtrade jewellery and other bits and pieces for good prices and delivery is free :) I think I might use them for presents in future.

Some blogs about Jess

I've read a couple of blog posts in memory of Jess on friends' blogs and wanted to share them with you. Holly C blogged about Jess here, which contains some lovely photographs that she took. And Holly S' blog about Jess which you can read here is beautiful and may make you cry.

Edit: Lou has just posted this update.

Edit: Sarah posted this blog post about Jess this morning. It includes some media links.

Edit: Emily wrote a fantastic blog post about Jess today. You can read it here.

Edit: Tor wrote this blog post.

I'll add any more to this post as and when they appear.

Physio, weight and listening to music

On top of my exhaustion this week I also had a sore throat for a couple of days and now I suspect I might be coming down with a cold. My mum is hardly ever ill, but she's been feeling awful with a cold for the last few days :( So I'm hoping she'll soon feel better and if I develop her cold her I really hope it doesn't affect me as badly, fingers crossed.

On Monday I made a phone call to chase up my Tac delivery because they had said the previous Mon that they needed to contact Hosp B to confirm that they had doubled my dose and would then ring me back to arrange a delivery. But I'd not heard anything and was worried because I had less than one week's supply of Tac left. When I rang them they said that all the paperwork had been completed by Hosp B so they would be able to send me a delivery. It was arranged for today and so arrived this morning. Phew! If I hadn't chased them up I think I might have ended up running out of Tac. And dad collected some of my other tablets from the pharmacy when he went to the GP that morning for his diabetes review (which went fine).

Then on Monday we headed out to Hosp A for my first physio appt. When I last had a clinic at Hosp B they were shocked I wasn't getting any support for my ME locally, so the physio there suggested getting me some physio locally to see if that helped my ME. However she didn't refer me to Hosp H, which is 6 miles away and takes 10mins to get to in the car, but instead referred me to Hosp A, which is 25 miles away and because it's in the city it takes an hour and a quarter to drive to! And when I saw a physio he read out my referral letter which didn't even mention ME! And he didn't seem to know anything about ME either! Grrr. My appt lasted for an hour and he made some suggestions to me. Some, such as splitting tasks up into smaller chunks, sounded sensible. But some, such as going from doing as little as I am now to doing a brisk 5 to 10 min walk each day, I suspect could do me more harm than good. And he wants to see me weekly, which isn't practical with the distance we live away. So I had a think about it and thought I'd give it one more try and talk to him about my concerns. I phoned the receptionist yesterday to arrange a second appt and told her that I can't make appts on Tues (because my mum works so I have no transport) and I can't manage to get there before 10am. They couldn't fit me in in the next month! So she said she'd talk to my physio and ring me back, but I've not heard yet. I'm hoping that either they'll give me an appt for in a month or so or will refer me to Hosp H. And ideally I'd like to see a physio who knows about ME too. Surely that's not too much to ask.

After my physio appt we had drinks in the cafe in the outpatient area at Hosp A and I called in the shop to top up my phone. Then we headed back to the car in the multistory car park. Walking towards the car mum couldn't find her car keys in her bag. Then we got to the car to find a note on the windscreen saying that her car keys had been handed in at reception. She must have left them in the car door, whoops! We assumed that by reception they meant customer services on the ground floor of the car park, but there was a note with the man there saying to go to the hospital reception. We found the keys there.

When we got home I was exhausted and was also shattered yesterday too. On Mon eve my dad went out to his first swimming lesson. He can swim, but not very efficiently, so has just joined an improvers class. He enjoyed it and sounds eager to go swimming again when he can. He pays for his lessons, but outside of lessons he can swim for free now he's 60. He had ordered some prescription goggles, but they didn't arrive until Tues morn. He'll use them for swimming from now on though. I used to love swimming, but am not well enough to do it at the moment. I do miss it though.

While dad was out at his swimming lesson, Chris and Sophie came round. They are hoping to move house. They currently live in a nice little flat and have been there since last March. But they don't get on with their neighbours and feel that they're outgrowing the flat (which might be due to the fact that they now have 4 degus!). So before they came to see us they went to look round a little cottage in a nearby village. It's quite small so the rent is only a little bit more than their current rent, but they think they can afford it. They are currently waiting to hear from the landlord (who lives in Australia), but are hoping to move in at the start of March.

And F was due to come round on Mon eve, but didn't turn up. That was the second time she'd arranged to come round. The first time she didn't make it because she was ill, but forgot to contact me to let me know. And then on Mon something came up so she couldn't make it, but I didn't find out until I text her after she was due to have come. Again she forgot to contact me. But I don't know the circumstances, so can't blame her. I was disappointed though.

Yesterday I didn't manage to do much because I was so tired. I watched a lot of TV. We found out that my nan is still in hospital because she's got diarrhoea. The doctors don't yet know why, so have delayed her discharge til she's better. Until we know the cause we can't risk visiting her at the moment just in case one of us was to pick something up, as tummy bugs can be very dangerous for me. Hopefully she'll feel better soon.

I have to have a go at putting together a draft CV before I see someone at Pathways to Work in a couple of weeks to help me put a proper one together. Chris is great with CVs (his makes people believe he has voluntarily left all the jobs he has been fired from, lol!), so he's emailed me his to have a look at and said to contact him if I need any help. So that is going to be one of my jobs for the next week or so.

As you know my mum works in the village library. There is only her and one other regular member of staff, but they have some relief staff in case they are ill etc. One of the relief staff is called A and my mum and many other people refer to her as Saint A. Saint A is very odd, very religious, calls her parents 'Mummy' and 'Daddy' despite being quite old (maybe in her 50s) and believes everyone loves her but every time she works in the library she ends up upsetting all the customers! For some reason she is currently in the process of setting up a discussion group for teenagers (over 15s) in the village. I'm not sure how often it will take place but the first session is one Friday eve at the start of Feb and I've got an invite. And hilariously, so has Alf! There isn't much for teenagers to do in the village, but we're not that desperate! I haven't actually seen the invite yet because mum has left it at work, but I was talking to a friend, V, who has also got an invite and apparently there will also be bread and soup available at the group. Mum says that it is mostly teenagers that Saint A knows from church who have been invited, but it's not a religuous discussion group - thank goodness. V is desperately trying to think up a good excuse to get out of it and so I'm not going if she's not going because I don't fancy it on my own but it might be a laugh together. So I'll let you know what V decides to do. Alf has already said no chance.

On Sun I was supposed to start keeping a diary of my food intake and tummy pains for a week for my dietician, but I forgot, so started on Mon instead. Keeping the diary is going ok, but it's sod's law, now I'm recording everything my tummy pains aren't nearly as frequent, long lasting or painful! Grrr.

My weight on Tue morn was 50.9kg. I can't stop feeds til I reach 51kg. The previous week I was 50.8kg, so fingers crossed I'll be 51kg next Tue. I'm still trying the various high calorie supplements. I've had another (my third and final) strawberry pudding and I don't mind those so am going to contact the pharmacy at my GP surgery tomorrow (I tried today but for some reason they were shut) to see if they can order me some more in. I started a yoghurt style Fortisip drink yesterday but then thought that I had better check with my dietician that I was ok to eat it because I have to avoid most youghurts because they contain probiotics, which could be dangerous to me because I've had a small bowel transplant. My dietician said that they are fine for me to drink, but that one has been open for too long now, so I'll try the other one tomorrow. I'm not at all keen on the flavours (vanilla & lemon and raspberry) but am going to try to judge it on the texture and then if that's ok I'll enquire about different flavours.

I've been catching up with some emails and letters over the last couple of days and seem to be on top of them now. This morning I got a lovely card and letter from Kate, my AYME buddy. She's having a tough time at the moment with her health, so I've written her a letter today and hope to get that in the post to her soon.

It's been snowing here for most of the day, but interspersed with rain and sleet, so none of it has settled. I'm feeling better today than I did Mon aft and yesterday, despite possibly having the start of a cold. My mum isn't well enough to go out the cinema tonight, but me and Claire are still hoping to go together to see St Trinians :)

I've recently heard that Mika's next single to be released in the UK will be Blame it on the Girls. I love this song and was disappointed when it was released in the USA and Japan at the end of last year, but we got Rain here instead (which is good, but not as good in my opinion). I've already heard Blame it on the Girls being played on the radio already even though it's not going to be released til Feb and it cheers me up every time I hear it :)

In my last blog update I mentioned that Ellie Goulding who I'd seen supporting Little Boots had been named as the BBC's Sound of 2010. She released the great Under The Sheets last year. Since then mum told me that she'd heard a song of hers called Starry Eyes on the radio a couple of times, so I looked it up and found out that it will be her next single which will be released in Feb before her debut album in March. I really like it and can remember her performing it when we saw her live. And a friend pointed me to an interesting cover that Ellie Goulding has done of Sam Sparrow's Black and Gold.

Another artist on the BBC's Sound of 2010 list is Owl City. I don't know much about him, but have heard Fireflies on the music channels a few times this week and really like it.

And Justin Bieber (who we saw supporting Taylor Swift in November) keeps popping up on the music channels with his latest video, One Time. I'm not a fan though.

Since my last update me and mum managed to finish watching Pride and Prejudice (the Kiera Knightley version). I didn't really like it though and wouldn't watch it again. And I've watched 27 Dresses which I enjoyed. I also attemped to watch Magagascar 2 yesterday, but couldn't follow it because I was so tired. I'll try again another time.

On DVD I've watched 3 and a half episodes of the Vicar of Dibley and 2 episodes of Gavin and Stacey. And one of my rental DVDs that came is an S Club 7 one (I used to love them), with interviews and music videos. I watched the interviews yesterday and am looking forward to watching the music videos because I don't think I've actually seen many of them.

And I've watched a bit on TV too. When I'm tired the music channels are always easy to watch. And today I watched an old Jools Holland we'd recorded but not watched yet that featured Ellie Goulding :) On our hard disc recorder I also discovered a special edition of the Culture Show from a few months ago which was celebrating 20 years of Wallace and Gromit, so I enjoyed watching that. I also watched the brilliant Nurse Jackie, Film 2010 (I was disappointed that Sandra Bullock's latest film got such an awful review), Channel 4's Bodyshock: Girl Who Cries Blood and half of an episode of Wanted Down Under until I got bored.

Although I only knew Jess through friends, her death last night has really got me thinking. I wrote a brief blog post about her death here, but might write more in my next blog once my thoughts make a bit more sense.

RIP Jess

Jessica Wales passed away peacefully tonight with her family at her side. RIP Jess, you were such an inspiration to so many people. You'll always be remembered.

A busy week

On Tuesday afternoon me and mum went out to visit my nan. She wasn't in as good spirits as she usually is because she'd not been sleeping well. But when we saw her she'd just got a supply of her usual painkillers and we provided her with earplugs and an eyemask so thought they'd help her sleep better. Dad visited her on Wed and said she was much more like her usual self after a better night's sleep. My nan's wrist is a lot better (she broke it in a fall in November) and she's able to have her wrist splint off for periods now. And she's generally feeling a lot better than when she was admitted 5 weeks ago, which I think is due to the rest she's been getting. The doctors are still trying to get her to put on weight though, so she's allowed to order snacks and high calorie foods with her usual meals. But she's quite a picky eater, so hasn't gained any weight yet. She's 5ft 6" and weighs just 46kg. I ate her slice of cake for her while we were there because she didn't want it. I'm not sure if the scans and tests haven't shown anything or whether they have but my nan just hasn't been told. She's not seen her consultant for about 3 weeks, she keeps seeing junior doctors instead and they don't have a clue! We've all suggested that she asks to see her consultant, but my nan wont because she doesn't want to cause any bother. However she is going to be discharged tomorrow or Tue :D The only thing stopping her getting home was the fact that her bed was too high for her now that her mobility has decreased, but Dad bought and set up a new one for her yesterday.

And on the way home from visiting nan I called in at the village surgery to pick up some tablets for dad and to give mine and mum's prescriptions in. I'll return tomorrow to pick up the tablets and tape for my NG tube that I ordered.

On Tue night I got to sleep at about midnight again :) That was good though as I needed to be at the stupidly early time of 7.30am on Wed morning! However I've been very nocturnal again since then :P Need to try to get to bed at a sensible time tonight though because I need to get up earlier than usual for a physio appt tomorrow.

On Wed morning at 9am I had my first Pathways to Work interview. Most people who receive the ESA benefit have to attend at least 5 of these interviews and the aim of them is to help you get back into work after being ill. I was quite nervous about it as I didn't know what to expect and was worried that I'd be pressured into going back to work before I was well enough. However, it went very well. I saw a lovely advisor and together we filled in lots of forms and I was asked lots of questions about my health, how it would affect me working, what sort of work I'd like to do etc. The advisor I saw agreed that I'm not well enough to work at the moment. However I've got an appt with someone else for 3 weeks time to help me put together a CV and I'll be seeing the same lady again in about a month when we're going to have a think about whether I could try some volunteering. So I'm glad I'm not going to be pressured into anything. And after my appt I had a wander round town and then we went to Starbucks. They charged us £2.20 for a glass of milk for me, what a rip-off!

And it started snowing while I was out on Wed - at last! It snowed solidly from about 9am til about 1pm. And the snow settled too. We've not had any more since then though and I don't think we're forecast any more. The snow doesn't seem to have hit us nearly as badly as it has the rest of the UK. The snow froze, but our roads seemed ok. And the snow is melting now.

On Wed late morning/early afternoon mum had to brave the blizzards to go and rescue Alf from college before he got stranded there. She managed to get him ok, but somehow skidded off the road on the way home and destroyed a fence! Luckily they weren't hurt and the car only has a tiny little scratch on the paintwork! Haha :P

When I got back home on Wed I collected some high calorie drinks from our next door neighbour because they'd been delivered while we were out. The parcel contained some Fortisip drinks - which I already know upset my tummy, some yoghurt style Fortisip drinks - which I still need to try but suspect may also upset my tummy, some Fortijuice drinks - I tried the apple flavoured one yesterday and it made me feel nauseus all day and some strawberry flavoured Fortisip puddings - I've tried 2 of them and they're not pleasant but I can manage them. I'm going to try the Fortisip yoghurt flavours and then get back to my dietician with my thoughts on them all.

I was exhausted after my busy morning on Wed, but still managed to have a quite a productive afternoon and evening. That afternoon I was phoned by a liver nurse from Hosp B. He said he couldn't answer all my questions because my consultant, Dr G, was out of the country. Dr G was supposed to be back, but couldn't get a flight due to the snow. Another consultant I know, Dr B, had been involved in the Wed meeting instead, but she'd been phoned at home because she was snowed in! But some of my questions could be answered. My Tac level was 8.2, so they want to keep my Tac level the same for now. It'll be reviewed after my next blood test at the end of the month. I've still not heard back from the company that deliver my Tac but will have to chase them up tomorrow because I really am running short of Tac (I think I've got 6 days worth left). My next clinic will probably be in March. That's got me wondering what has happened to my clincs with Dr W at Hosp A because when I saw him in July he said he wanted to see me again in 3 months. It's now been 6 months and I've not heard anything, I wonder if they've forgotten me?!

Apparently I will receive the results from my Dec tests in a letter, but I don't know when I'll actually get that. So for now I don't know what my kidney results were. Apparently my scopes and biopsies showed no rejection, which is great :D However they did show some inflammation. The nurse I spoke to didn't have all my notes with him, but thought that that might be an indication of a low level infection that could be causing my tummy cramps. Then I pointed out to him that I'd been getting the pains for 18 months, so he wasn't sure. Hopefully my consultant will soon shed some more light on that though. I'm so glad they've found something that could explain my tummy pains at last. Hopefully now they'll take me more seriously.

The nurse I spoke to had no idea at all about the heart ECG and echo and he looked back at my last admission letter and my last 2 clinic letters but couldn't see any indication of why Dr G had booked them for me. He was very surprised that they'd just been booked without me knowing anything about it. So the nurse emailed Dr G who quickly replied to me. He thought that there had been a mix up. Apparently all post transplant patients have regular echoes, but I'm 3 years post transplant now and hadn't heard about that before! And that can wait til my next clinic, so the separate appt has been cancelled.

On Wed evening I attemped some knitting! Mum taught me with some huge needles and some chunky wool and I knitted a few rows. Me and mum were both surprised at how quickly I got the hang of it despite feeling exhausted. I didn't do much though because I wanted to leave it at a good point. And I've not picked it up again yet.

During my nocturnalism that night I sorted through all the Christmas cards from this year and picked out a few to keep which had notes written inside or were hand made cards. And then I looked through a big carrier bag of my old artwork from when I was about 3 til 12. Some of it was very cute :) And I used to write backwards before I started school, hehe :P

On Thur morning one of the DVDs I'd ordered for my mum for her birthday arrived in the post. And the other DVD has been dispatched. We also received a very sweet thank you note from Sophie's little sister E thanking us for her Christmas presents. That morning I also tidied my bedroom (decluttered, dusted, hoovered...) in preparation for Catherine coming that afternoon. That wasn't a clever idea, I was then shattered before she'd even arrived!

Catherine and her mum came round for a couple of hours on Thur afternoon. It was great to see Catherine because she's been away at uni. We exchanged Christmas presents (Catherine gave me some Pocky and some fluffy bedsocks), chatted, played on our DSes and also played on my Wii which was good fun :D And that evening I prepared for my ESA medical assessment by getting recent medical letters together, reading through the advice I'd received on AYME and some info I found on the Internet...

On Fri morning we headed into the city. As we were in the car we passed by a gritter and so got grit thrown over the windscreen. Of course the water squirters were frozen and using the windscreen wipers just smeared the windscreen even more. So that made mum's driving more difficult. We parked at the Park and Ride carpark and got a bus into the city centre. We were a bit early so wandered around the shops and I picked up a bargain - Coraline on DVD for just £8 (the cheapest current price on the Internet is £13!).

Then we walked to the venue for my ESA medical assessment. The doctor I saw really seemed to know his stuff - he had a good understanding of ME and even understood when I told him I'd had an interssucception of my small intestine! I had to ask him to repeat some things because he had a strong foreign accent, but he understood me, listened well and made lots of notes. I had been told that it could take up to 2 hours, but it only took 30mins. He didn't ask too many questions, but because I answered them in lots of detail we managed to cover a lot. He also asked a lot about my transplant as well as my ME. And he noticed things like that I need to be reminded to eat and drink because I don't feel hunger or thirst. He didn't ask me to do any tasks, it was just talking and answering questions.

The doctor I saw will send his notes to the people who make the decision and then they'll write to me. So I wont know the outcome for some time, anywhere between 2 and 6 weeks I think. The possible outcomes are to be turned down for ESA or to be put into one of 2 groups to receive ESA - the support group which gets a little bit more money and doesn't have to do anything else or the employment group who get slightly less money and have to attend 5 Pathways to Work interviews. So basically most people who receive ESA get put into the employment group with those who are more ill/disabled being put into the support group. The doctor I saw said he shouldn't really be telling me this, but he's going to recommend that I'm put into the support group. The final decision isn't down to him though and I'm not really bothered which group I'm put into, I just want to be granted ESA. So fingers crossed. I'm trying to put it out of my mind for now though.

After my ESA medical assessment me and mum went to a cafe where I had a glass of milk, a croissant and a bit of mum's piece of flapjack. I always wear an organ donation wristband. I was given lots post transplant by someone I saw at the time, but haven't been able to get hold of any more, they were just manufactured as a one off. I gave lots to friends to wear to raise awareness and me and dad have got through a few each because they wear out after a while or get lost. I lost one when I was in Japan, I think it must have flown off one time when I took my gloves off. And somehow I managed to lose my final wristband that way was while we were out on Fri :( Luckily Claire had one that she didn't wear much, so she's given me that back. I felt lost without it.

On Fri evening I was surfing the Internet and discovered that Ellie Goulding (a great singer/songwriter who I saw supporting Little Boots on tour) had been named as BBC's Sound of 2010 :D You can read more about her and the award here and here. And she was on Radio 2 here if you'd like to hear some of her music. And while I was on the Internet I also cancelled my subscription to Focus magazine. It's a great magazine, but I'm really struggling to read it at the moment. And mum's friend Mary (who lives just across the road) popped in to tell us about how her trip to New York had been. It sounded amazing, I'd love to go to New York!

On Saturday and today I've been exhausted after such a busy week and a stressful day on Fri. So I've not managed to do much. On Sat I briefly played on my Wii and chatted to Chris when he popped round. And I also remembered that I'd got 60 free Napster music downloads when I bought my new laptop, so used some of them to download Alexandra Burke's Overcome album (which I've listened to lots on Spotify and really like) and a song called Under The Sheets by Ellie Goulding which I really like and heard her perform live when we saw her :)

This morning I felt shattered so tried to go back to bed for a couple of hours. I'd just nodded off though when I was woken by the sound of the downstairs TV coming up through the floor so I decided to give up on that plan. Claire came round this afternoon which was nice, but we only chatted because I didn't have the energy to play on the Wii or anything like that.

There was outrage in the ME community earlier this week when the Daily Mail posted a poll on its website asking whether people thought ME was a genuine illness or not. You can view it here. It's annoyed me a bit because they wouldn't dare run a poll like that for any other illnesses, but somehow it's ok to do that for ME. Grrr. Some people I know have really been upset by it though :(

I posted an update today about the latest news on Jess. If you haven't already done so, please read it here.

M spent 6 hours in theatre on Thur. She remained stable throughout the operation and afterwards. The surgeons discovered that all of her transplanted bowel is very damaged. They couldn't remove it all because of the blood vessel connections to her transplanted liver (which is completely fine), so just removed the worst bits in the hope that that will reduce the bleeding. If not she'll have to return to theatre this week to have some more removed. The hope now is that she'll stabilise enough to be listed for a second transplant. Fingers crossed.

I've been in contact with C, who is mine and Imogen's mutual friend. Her mum had been receiving text updates from Imy's mum, so she let me know as much as she knew. And C gave me Imy's mum's mobile number so I've been in contact with her myself today. Imy received her trasplant on Dec 31st, so that's 11 days ago. She's back on a ward and has been eating a little. She could eat a bit pre-transplant, but it was very restricted. Imy is still very uncomfortable which is completely understandable and is having a bit of difficulty learning to take her tablets orally because she's always had them down a tube before. But her hospital seem to have a very different approach to Hosp B. After my transplant my TPN (intravenous feeding) was gradually reduced and replaced by NG (enteral) feeding. And then as I've gradually learnt to eat and have built my eating up, my NG feeds have been reduced. However Imy is allowed to eat pretty much whatever she wants and is currently still on TPN. But next week they're planning to stop her TPN completely and see how she goes with just eating. She wont have any enteral feeds. That sounds very daunting to me, but hopefully Imy will manage ok. Her mum thinks that she might be in touch with me herself soon and then hopefully I'll be able to visit her in hospital when she's feeling a bit better :)

This week I've listened to quite a bit of music. When mum played with Spotify we listened to Michael Buble (who mum likes more than me) and Pixie Lott (who we both love). I've also listened to Mika on my iPod on the buses on Fri. And I've listened to The Saturday's new album Wordshaker (which I received for Christmas from one of my Secret Santas) - I currently really like Ego which is going to be their next single. I've just discovered that Spotify have now made Cheryl Cole's album 3 Words and Rihanna's latest album Rated R available to the people who use Spotify for free, whereas it was originally just available to paying members. I've been waiting for both of those albums so have listened to a bit of Cheryl Cole's album but am looking forward to listening to more of it and I'm also looking forward to seeing what I think of Rihannna's album.

This week with my parents I've watched the final 2 episodes plus the outtakes of the first series of Gavin and Stacey and the first 2 episodes of the second series (which we've borrowed from the library). We're still all really enjoying watching it together :) And on my own I've watched 2 episodes of The Vicar of Dibley from my boxset and 3 episodes of the first series of Dragons' Den which I rented from Tesco DVD rental.

And the only film I've watched this week is St Trinians (which I had rented), with my parents. I thought it was quite good. Me and mum are hoping to go to the cinema with Claire on Wed evening to see St Trinians 2 :)

And on TV I've watched the following:
~ Great British Railway Journeys - I started watching this series with mum because she loves trains and railways. I said in my last blog post that the first episode was disappointing because most of the content wasn't actually railway related. We watched Tue's episode and then gave up on it.
~ Hannah: The Girl Who Said No To A New Heart - this was on TV on Tue evening, but I watched it on Wed. It's definitely worth a watch, as it's very thought provoking.
~ Nurse Jackie - this is a black comedy series from the USA. It was on the BBC every night last week and the remaining episodes will be on weekly from tomorrow (Mon). I wasn't sure about it at first, but now me and mum really like it. I'd recommend it.
~ Wife Swap USA - rubbish TV I know, but it amused me ;)
~ 3 Men Go To Ireland - I watched the second episode of this off our HDR and it was very funny.
~ Tracy Beaker Returns - I loved watching the original series of Tracy Beaker when I was younger and a new series has just begun after many years. So I'm watching it :D
~ QI - very funny as always.
~ Sugababes new music video for Wear My Kiss - I used to like the Sugababes, but have gone off them recently. I had to watch the first TV showing of their new video though. I wasn't impressed.
~ and I've also watched the music channels a bit this week too.

Jess update

Just a quick update on Jess. On Friday she had a setback and had to be sedated and go back on the ventilator. Yesterday was a stable day but today things aren't looking good. I don't know any more details, but Jess really needs positive thoughts at the moment. Thinking of her and her family.

Full update on me and my week coming as soon as I feel up to writing it.

Happy Birthday Blog!

My blog is one year old today. This was my first post, written on 10th January 2009. I've really enjoyed keeping a blog over the last year and hope to continue for many more years to come, as long as people still want to read. And I will post an update soon about my ESA medical assessment and the rest of my busy week.

My week

Sorry I've not updated for a week, this update might be a bit long but I'll try not to ramble too much! :P In between blog updates I save rough notes of what I've been doing so I can remember what to write about when I come to publish my next blog update. My notes for this week look quite overwhelming, but I know the longer I leave it the more daunting it'll get! So I'm currently listening to a Radio 2 programme on iPlayer presented by Mika (you can listen here) and I'll attempt to write a blog update that makes sense :)

On Wed after I'd written my last update, one of the liver nurses from Hosp B phoned me back. The nurse I spoke to said that my consultant was away so she couldn't ask him why I needed the heart scans and she didn't know the answer. But my blood results looked good. She asked me to phone back on Mon (yesterday) to remind her to ask my consultant about the scans when he was back in, so I did. I also asked some more questions - what were my biopsy and kidney test results from my MOT last month and did my scopes show any causes for my tummy pains, what was my latest Tac level, what should my Tac dose now be and when do I next need bloods repeating? The nurse I spoke to said that my last Tac level was 8.2 (my target level is 5 to 8) so she didn't think that my dose would need to be altered. And she said she'd put the other questions either to Dr G (my consultant) or Dr B (another consultant I know) at the weekly meeting on Wed and they'd phone me back as soon as they had some answers for me.

My Tac level had previously been stable for a long time and so my dose had stayed the same. But as my dose was doubled a couple of weeks ago, a few days ago I was putting out my tablets for the week and realised I was running very short on Tac. I get all the rest of my tablets from my local pharmacy, but my Tac is delivered by a healthcare company. I knew I didn't have a delivery coming up, so yesterday I phoned them and explained that my dose had recently been doubled and so I only had 12 days worth of Tac left. I thought it would be simple to get some more sent out, but no. They asked who had changed my Tac dose, so I said Hosp B, and I was then told that they would have to send some paperwork to Hosp B for them to confirm that they had in fact doubled my dose! Then once the paperwork is sorted they'll be able to phone me up to arrange a Tac delivery. I stressed that I only had 12 days of Tac left, so hopefully I'll get a delivery in time! Fingers crossed.

Last week my dietician confirmed that my feed plan was still the same (stay on 3 nights of overnight feed til my weight reaches 51kg and then try without feeds) and said that the new high calorie drinks and puddings for me to try should be delivered soon. I suspect that my current high calorie drinks are still making my tummy worse even though I'm now drinking them more slowly and diluted with cow's milk.

In response to my question about trying excluding foods from my diet, my dieitican was worried that this might make me more reliant on overnight feeds, so suggested that first I should try keeping a food and symptom diary for a week. I'm going to start this diary next Sun and my mum is going to help me with it - in it I'll record what I eat and drink, times, amounts, ingredients and cooking methods. And I'll record every tummy pain I get. Hopefully the diary will show some sort of pattern to my tummy pains and maybe suggest what is triggering them.

I weighed myself again this morning and my weight was up slightly to 50.8kg. So I'll stay on my overnight feeds for now, but my weight is getting close to 51kg :)

My nocturnalism was a bit more extreme than usual Sat night and Sun night, I got to sleep around 2am both nights! But last night I made a huge effort to get into bed earlier and I think I fell asleep around midnight :) I've been getting up between 10am and 11.30am most mornings but managed to get up just before 10am this morning. So fingers crossed I'll be able to keep this better sleep pattern up.

There has been lots of news on friends in the transplant community this week. In this update I said that Imogen had received her call. I've not heard any news since because I'm not in touch with Imy's parents, just her. So I wont hear anything until she's feeling well enough to text. I might try phoning her hospital though (which is a different hospital to mine) to see how she is. I'm not sure if they'll be able to tell me anything though. And we have one mutual friend, so I've asked her if she knows anything.

And yesterday morning I gave this update on M and Jess. After I posted that yesterday I heard more from M's mum. M's breathing continued to improve so she's now off the oscillator and just on a ventilator :) She's losing a lot of blood from her bowel though so the doctors were thinking of taking her to theatre today to try to slow the blood loss. But because the rejection can't be got under control M is going to have to have her bowel removed in theatre in the next few days and then at some point she'll have to be relisted for a second transplant :(

Jess is stable and managed to get out of bed and sit in a chair (with assistance) yesterday :)

I had a very busy day on Thursday. I had to get up at 8.30am and set off for the orthodontist (at Hosp A) at 9.30am. My orthodontist wasn't as rude as he normally is and talked to me to tell me what he was doing. He was happy with my progress so swapped my wires for some slightly thicker and less flexible ones. And he showed me how to use little elastic bands in my mouth too. Together the new wires and the elastic bands should help to close the gaps from my extractions in the summer. My teeth are now straight, so once the gaps are closed that'll be my orthodontic treatment finished. My mum asked how long he expects that to take and he said that as long as I wear the elastics properly then it should just take 6 months! I'm very happy with that because I've only had my braces for 9 months and was originally told I'd need them for 18 to 24 months, so if I just have them for another 6 months then that's not as long as I'd expected :) I can't wait to get rid of them because without them eating should be easier and people will hopefully stop thinking I'm 15 or 16!

The elastic bands felt very odd to start with in my mouth because I wear 2 at a time and each one goes from a tooth in my top jaw to a tooth in my bottom jaw. I was told I needed to wear them for at least 18 hours a day, but am wearing them for almost 24 hours a day with no problems. They do sometimes snap or ping off when I'm eating though and I think I've swallowed at least one so far! :P And the tighter wires made my mouth very sore for a few days, especially when I ate, so I was taking Paracetamol regularly for a few days. But my mouth is feeling much better now :)

After my orthodontist appt on Thur morning me and mum got a bus into the city centre. We had baked potatoes for lunch and then went round the shops to look for me some boots. I think my feet must be very odd shaped because I tried loads of boots on which didn't fit. And the size of my feet seemed different in each shop - ranging from 3 and a half to 5 and a half! Most annoying were the shops where the size 4 boots were too small and the size 5 boots were too big, but they didn't do half sizes. Eventually I found a lovely pair of boots which seemed to fit much better. What do you think of them? I bought them although I've never spent that much on footwear before! I've not worn them outside yet, I'm going to wear them for a bit around the house first to make sure that they fit comfortably.

On Thur night I didn't do anything to celebrate New Year. Alf went out with his friends, but I just stayed at home with my parents and we stayed up watching TV til about 1am. At about quarter to midnight on New Years Eve dad told me that exactly 20 years ago I'd been conceived! Not sure that I needed to know that!

After such a busy day on Thur I was exhausted. I expected that but didn't expect that I'd feel so awful on Fri, Sat and Sun! So I didn't do much at all. I felt a bit better yesterday morning but after helping my mum sort out her photos on the computer (I put them into more sensible folders than the automatic computer ones so she can find them) and loading some of them onto the knitting social networking website that she uses, I felt exhausted! So I didn't feel up to going out with mum to visit my Nan in hospital yesterday. Hopefully we'll go and visit her this afternoon though. Still no news on what the problem is, but I think she's stopped having the dizzy spells now.

On Wed I received a Christmas present from my friend H. We didn't manage to meet up over Christmas but because both of our mums work in libraries in the county we wrapped each other's presents up, disguised them as important library stuff and then sent them with the library deliveries! And it worked. H got my present just before Christmas but she sent hers a bit late, so I received it last week. It was a very pretty red and puple cushion. I didn't think it'd go in my blue and purple room, but it does :)

My mum's birthday isn't til March, but I was looking on Amazon on Sunday and found 2 DVDs I thought she'd love so I bought them for her :) I bought her Paint Your Wagon, because she loves that film but only has it on VHS not DVD, and the complete collection of Dinnerladies because she really enjoys watching old episodes of it when they're on TV and really likes Victoria Wood. So that's mum's birthday presents sorted :) I've got a few people's birthdays coming up in the next few months so am trying to get organised with presents - it's my cousin Tam's birthday mid Feb, mum, Alf and Lizzy's birthdays in the first week of March and Claire's birthday in April. And mother's day in March too.

I heard from my friend F on Sunday. She asked if she could pop round yesterday with my Christmas present, so I said yes. Then I realised that I'd not been expecting a Christmas present from her, so hadn't bought her anything! But I found a lovely incense gift box in my present drawer so wrapped that up for her :) F didn't make it round yesterday because she was ill, but is hoping to pop round later in the week when she feels better.

Me and mum took all the Christmas decorations down on Saturday. It's sad now Christmas is over for another year. There's always such a big build-up to Christmas and then suddenly it happens and is all over! :(

My uncle (dad's brother) phoned up this morning and asked me to give a message to my dad. My uncle was supposed to be visiting my Nan's house today to try to sort her out with a new bed because I think her current bed is too high. But my uncle said he couldn't do it because he was snowed in. He only lives about 20 miles away, yet he's snowed in and we've got no snow at all! I've just seen lots of messages on Facebook about snow and saw the news about all the chaos it's causing, but we've not got any at all. And the Met Office forecast doesn't predict we'll get much at all.

I mentioned on my last blog update that I'd been thinking about getting a hobby and felt very inspired. On Wednesday evening I went through some of the big plastic boxes under my bed that are filled with craft stuff and also looked at some craft websites that friends had recommended. After my busy day on Thur I felt awful so haven't really had the energy to get excited about it since. But I will get myself a hobby.

I've continued looking at what the iTunes 12 Days of Christmas offer is giving away each day. Most of the downloads I've either not wanted or have been applications that wouldn't work on my iPod classic. In my last update I said I'd downloaded 2 music videos (a live Robbie Williams performance and a JLS music video), but they'd been slow to download with our Internet connection. Since then I've downloaded a 30 minute episode of Outnumbered (which I've never seen, but Outnumbered is supposed to be good) and a short film called Peter And The Wolf (which had good reviews). I've not got round to watching either of them yet though. Outnumbered took absolutely ages to download. I started downloading it about midday and when I went to bed about 12 hours later it still hadn't finished so I left my laptop on and it finished downloading overnight. And I started downloading Peter And The Wolf just after midnight one night and left my laptop on when I went to bed so it finished downloading overnight.

Because I've had a few days where I've felt awful this week, I've watched a lot of TV and DVDs.

The films I've watched are:
~ Miss Congeniality 2 - which I quite liked but it isn't nearly as good as the original Miss Congeniality. I love Sandra Bullock :)
~ 17 Again - I was surprised at how good it was, but it was very American
~ Raising Helen - This is a great film and I'd recommend if you've not seen it. This also has one of my favourite actresses in it, Abigail Breslin, but she was very little (and very cute) when this film was made.
~ Pride and Prejudice - I started watching this with mum yesterday but struggled to follow the dialogue because I wasn't feeling too good. We'll finish it together soon. I quite like Kiera Knightley. And I was surprised to spot Carey Mulligan (from the Doctor Who episode Blink and the film An Education) in it. Keep an eye out for her, she's going to be huge.

And the Julia Roberts boxset that I bought from Amazon arrived yesterday so I'm looking forward to watching some of those films. And I looked through lots of old Radio Times magazines and picked out the interesting looking films to add to my rental list. St Trinians has just been posted out to me, so I'm looking forward to watching that when it arrives because I've not seen it yet.

The Gavin and Stacey DVD I persuaded mum to buy arrived in the post last week so we've watched 4 episodes of it so far. We all really like it, so it's great to have found a programme we all enjoy watching together :) And we've ordered the 2nd and 3rd series on DVD from the library. I've also watched one episode from the first series of Dragon's Den as I'm renting that at the moment. And I've watched 8 more episodes (plus some out-takes) of Absolutely Fabulous this week :D

And on TV I've watched:
~ The episode of Absolutely Fabulous titled Gay - it was on TV last week. I loved it but I'm a big fan of Absolutely Fabulous and over the last few months have watched almost every single episode :)
~ 3 Men Go To Ireland- the first episode was very funny. I've not watched the second episode yet though.
~ New Year Top Of The Pops - it was ok, but some of the performances were repeated from the Christmas special which I'd watched.
~ Jools's Annual Hootenanny - I didn't enjoy all of it, but some of it was good. I especially liked Boy George performing Karma Chameleon and Shingai (from the Noisettes) performing Don't Upset the Rhythm. Can't wait to see The Noisettes in concert next month :)
~ Who Do You Think You Are with Julia Sawalha - it was quite interesting, but I wanted to know a bit more about Julia (who I like from Absolutely Fabulous).
~ Doctor Who: The End of Time Part 2 - I struggled to follow it because I was feeling really rotten that day. What I understood I liked though. I'm not keen on what I've seen of the new doctor so far, I don't think he'll be as good as David Tennant.
~ Alan Titchmarsh Show - I'd recorded this episode before Christmas but skimmed through it to see Pixie Lott performing.
~ Film 2009 - this was all about the films of the year and was interesting.
~ Great British Railway Journeys - I watched the first episode of this with mum last night because she loves trains and railways. Disappointingly though, not much of the content was actually about railways.
~ Nurse Jackie - I watched the first episode of this last night to see if it was any good. And I'm not sure. I didn't think it was very funny though. Think I might have to watch tonight's episode too and then see what I think.
~ Wanted Down Under - I don't usually watch daytime TV, but watched one episode of this this week. I've watched it before when it's been on because I quite like the idea of visiting Australia. I used to want to live there, but I don't think I do any more.

Some better news

Yesterday I heard that Jess is now off the ventilator and breathing on her own :D

And yesterday I text a mutual friend to ask if she knew any more on M and she forwarded me a text that M's mum sent her yesterday morning. Her mum said that M was definitely improving rather than worsening :) The oscillator was able to be decreased from 80% oxygen to nearly air as M's breathing was improving. And her bowel started working again. M still has rejection of her bowel, but it working a bit is much better than it doing nothing as it had previously been. And M's mum was feeling much more positive. So hopefully M will be able to keep fighting and making progress.

The Tell Me About Yourself Meme

Taken from Sunday Stealing.

1. When is your birthday? 12th September.

2. Where were you born? Hosp H.

3. Where do you live now? A village in England.

4. What is your heritage? English. My Nan says she's part French, so I guess there's a little bit of French somewhere.

5. Tell us about a weakness. I'm impatient. And I spend too much money on DVDs :P

6. What's a goal that you'd like to achieve? I'd like to be less shy around new people. And I'd like to find a more productive use of my time. For more look here for my hopes for this year.

7. What is the most overused internet phrase? 'Lol', but I'm guilty too :P

8. What was your first thought this morning? My mouth hurts (I had my braces tightened and elastics added a couple of days ago).

9. When do you usually go to bed? Depends how nocturnal I am feeling. Usually somewhere between midnight and 2am.

10. Do you smoke? If not, did you ever? No I don't, never have and never will.

11. Do you like your current relationship status? No, I'd prefer not to be single.

12. Do you (or did you) get along with your parents? I usually do.

13. How often do you drink alcohol? Never, it tastes horrible!

14. Have you ever tried drugs (that weren't prescribed)? Nope. My dad has told me a lot about his experiences though!

15. Have you ever gone skinny dipping? If yes, do tell. Nope, I'm boring :P

16. If given the choice, how would you like to die? Instantly in a car crash at night when I'm old.

17. What did you want to be when you grew up? When I was younger I think I wanted to be a teacher. I've had various thoughts since then, but still don't know.

18. Have you ever been dumped? Nope. Sadly I've only been in one relationship (when I was 12) and I ended it.

19. What's on your pizza? I'm not keen on pizzas.

20. Have you ever shoplifted? Nope.

Update on M

I've just heard an update on 4 year old M from her mum. I last wrote about her here. M spent 4 days in ICU ventilated, but after giving her a break from the anti rejection drug that caused the fluid retention she was well enough to come off the ventilator and return to the ward. As soon as the course of that anti rejection drug was finished M immediately became very ill with rejection again so they decided to try one last drug. That didn't make a difference to the rejection but because M is currently so immunocompromised, it made her very ill. Her breathing deteriorated and she was rushed to ICU and put on an oscillator because a ventilator wasn't enough because she has pneuomonia. M is currently very very ill and for now the doctors have had to completely stop all her anti rejection drugs. I'm so worried about her and can't imagine how her parents must be feeling now. If you pray, please pray for M, if not then just keep her and her family in your thoughts.