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.