Long update part 1

Sorry that I've not managed to update my blog for a little while. The update I've written is too long to post as one, so I've just split it in half and will publish it as 2 posts. Part 2 will be posted up tonight. So here's part 1...

My health has been quite up and down since my last update. I'm used to good weeks and bad weeks or good days and bad days, but this week I seem to have been going between feeling great and feeling awful within the same day. I'm finding this really frustrating, at least if I used to wake up feeling good I'd know I'd feel like that all day, but now I don't even know that. It's making it very hard to plan anything too. When I say I feel awful I often have a headache and/or a tummy ache and feel exhausted, just too tired to do anything. Last Mon morn I felt awful, I was worried about a few different things, I felt down and completely exhausted. I felt better that afternoon though after going back to sleep for an hour and a half. Tue was generally a good day but I became very exhausted at one point. This Sat just gone I felt ok in the morning, completely exhausted in the afternoon (which resting in bed for an hour listening to music didn't help at all) and fantastic in the evening! The rest of the days have been more stable though.

My tummy pains have been very bad some days, so I don't think the Amitriptyline is working. I tried the Spasmonal first for one week and then the Amitriptyline for a fortnight. A couple of days ago I started back on the Spasmonal again but am going to continue the Amitriptyline and see if taking them both together helps. Hopefully it will.

My nocturnalism seems to have been as bad as ever despite the Amitriptyline, I've had a few earlier nights but the late nights have been 3am ish. My younger brother Alf has stayed up through the night twice this week. This isn't when he goes out, this is when he's at home, but he just doesn't sleep all night. Think it's because he's bored and it seems a good idea to a teenage boy! His sleep pattern is now even more messed up than mine!

My weight last Tue was down a little bit from 53.3kg to 53.0kg, but that small decrease is nothing to worry about. I forgot to weigh myself this morning to email my weight to my dieticians, so I'll do that tomorrow morning instead.

My Hosp B consultant said at my joint clinic last month that my bloods can go back to 3 monthly now as all of the previous results were within the normal range. That means my next blood tests should be in June. However a couple of weeks before my last set of bloods were taken (at the start of March), my Tac dose was lowered from 2mg twice a day to 1.5mg twice a day because my last Tac level had been 13. My normal range is 5 to 8, so luckily when my bloods were last done my Tac level was about 5. However because it dropped from 13 to 5 in just a couple of weeks on the new dosage I'm worried that since then it could potentially have dropped more (making it too low) and that wouldn't be picked up til June. So I've decided I'm going to take some blood via a fingerprick this week (probably tomorrow) and post it to Hosp B for them to process for my Tac level.

Rachy is still making good progress since her transplant. You can keep up to date with her news here.

Recently there has been an announcement about a slight change in the way organ donation will now work in the UK. You can read more about it here, but put simply it means that under some rare circumstances organ donors or their families will be able to request to donate organs to loved ones. I was quite against this change when I first heard about it, but Emily wrote a great explanation of it which has reassured me:

"For those concerned about requested allocation...

Here's what the announcement means as far as I understand it:

Scenario: a woman dies in a car-crash. Her daughter is in need of a new liver. Previously, this would have absolutely no bearing on the organ allocation, despite the obvious wishes of the deceased being to save her daughter, as well as it being of psychological benefit for the donor family.

What has happened is that they have created a clause to allow medical professionals to acknowledge this exceptional circumstance. It's extremely rare, but similar scenarios have happened. It is not a change in the system, it is to legally allow some flexibility in highly specific cases.

Sally Johnston says: "This guidance will enable us to consider, as we always do, what the donor wanted but also to take into account the health and wellbeing of a sick patient who is known to them."

It is another minor adjustment in the laws surrounding organ donation to try and acknowledge the complexity and individuality of each and every case.

I hope that makes more sense - I was somewhat alarmed when the journalist first explained it to me but on reading what it actually entails I don't see any problem with it."

On Sat (27th March), me and mum went to the cinema to see The Blind Side. I think maybe I'd been expecting too much from the film after Sandra Bullock won an Oscar for her performance in it, but it was a very good film, if a little long. It's quite an American film, I didn't understand the American football stuff at all, but luckily that didn't seem to matter too much. Some of the lines were very funny too and made me and mum laugh.

On Sun (28th March) me and mum went to browse round the local weekly carboot sale. It was better than the previous week, but wasn't great. I did get some bargains though - a PS2 game (Harry Potter Quidditch World Cup - to convert Claire, who loves HP, into a PS fan because she currently hates them due to her ex spending more time playing on his PS than with her), 2 PS1 games (Tomb Raider and Spyro Year of the Dragon) and 3 DVDs (Sliding Doors, the first Pirates of the Caribbean film and Mickey Blue Eyes) totalled me just £5.20 :D I spotted one of the stalls that I'd previously bought a wrong region DVD from, but I didn't have it with me to ask to swap.

That evening Claire and her mum came round because they'd not made it round the previous Friday. They could only stay for a couple of hours before Claire's mum had to head home, but it was really nice to meet her for the first time.

Last Tue (29th March) I only went out to the local shop to buy a Radio Times. That afternoon I really enjoyed chatting to Lou on MSN and my older brother Chris popped round briefly to borrow my USB memory stick

On Wed me and mum had been planning to go out to a local city, but after seeing that the weather forecast predicted low temperatures and rain we decided to go to the other nearby city instead because it has an indoor shopping centre where we could shelter. We thought we might go on the train but ended up going in the car instead. While we were out we stopped at W H Smiths for drinks and to eat our lunch, but I was told off for eating my own sandwiches in there! My tummy was very painful while we were wandering round the shops :( I bought a Meryl Streep DVD called First Do No Harm in a charity shop for just 25p - bargain! I also bought a pillow speaker from Maplins to replace my pathetic pillow speaker. The new one is much better - to hear the music from my old one I had to put my ear in a specific position on the pillow, but with my new one I can hear the music when my head is anywhere on the pillow :) You can see it here (and it does work with an iPod). The only other thing I bought was 2 copies of the Pick Me Up Spring Special. This isn't a magazine I'd usually buy, but Holly S has her story in it (and it's not completely over the top like stories in these magazines usually are)! I'm in one of the photos she's included :) If you can find a copy in a shop, Holly's article is on page 57. At the end of the day my heels were sore and I was quite tired, but I had a lovely time. The other day my dad picked me up some memory foam shoe inserts, so I'm going to try them for my heels. My dad also got me a lockable cash tin this week (he had it at work, but it wasn't being used), so I can safely lock my money away again.

Thur was April Fool's Day. Two of the best April Fools I found on the Internet were Google's which can be seen here and the Guardian's which can be seen here.

On Thur I went to Barnardo's in town. On the way I called in at a games shop and traded in 3 out of 5 of my unwanted PS2 games (they didn't want 2 of them) for £8 in-store credit and bought some very pretty reduced greetings cards in Oxfam. I got to Barnardo's for 11am like I'd said and was met by the manager who I gave in my application form to. Firstly I was shown how to steam the clothes and left to steam a rail of clothes. Then the manager went through all the health and safety stuff with me before showing me how to hang the clothes (which hangers to use for which clothes and where to find the cubes with the sizes on to put on the hangers...) and I then hung lots of clothes. It was ok, but a bit monotonous. And it was tiring because it was a new environment and I was on my feet for the whole time (just over an hour). I did have a little accident when I tipped a box of a few hundred little black size cubes off the surface and all over a pile of clothes on the floor. So when my mum came to collect me (because I was very tired) I was on my hands and knees trying to pick all these little cubes up! :P Apparently I wasn't the first to do that though, hehe. All the other volunteers were really nice and the girl out the front looked about my age so I'm hoping to chat to her a bit more next time I see her.

On Fri me and my mum went to visit my Nan. She's lovely but hard work! After having her current TV for 2 years she'd just discovered that it has built-in Freeview so she asked me to teach her how to use that and I also showed her how to access the radio channels on that. Then I taught her to use her DVD player/recorder to play DVDs and CDs. While I was doing this she wanted to know what every button on each remote did! She also asked me to teach her how to record on her DVD recorder, but I said that would have to wait til next time! I'm not sure how much she'll remember but I did write some key points down, so hopefully that'll help her. When I was writing the notes my hand went very shaky (I suspect that was because of my Tac or maybe just because I was tired), so I hope she can read them ok. I also showed my Nan my iPod (Classic) because she'd never seen an MP3 player before. She couldn't understand how the sound quality on it would be any good, so I said she could have a listen. When I offered her the earphones she had no idea how to fit them in her ears because she'd never used them before! Once we got it sorted she loved listening to my iPod. I played Love Story by Taylor Swift on it and her feet were tapping along and she was shouting excitedly to us :D

Very excitingly, Fri night marked the return of Ashes to Ashes. I've watched both series of Life on Mars and both previous series of Ashes to Ashes and have them all on DVD. I think Life on Mars and Ashes to Ashes are definitely my favourite TV programmes ever. I can't decide which I like best though - I liked the freshness and originality of Life on Mars but I really like that the main character in Ashes to Ashes is female. I'd been eagerly anticipating the first episode of series 3 (the final series) of Ashes to Ashes on Fri and luckily it didn't disappoint, I thought it was a great episode and a very strong start to the series. If you've not yet watched it but would like to, you can see it on iPlayer here. Now don't read any further if you're a fan and haven't yet seen the first episode because the remainder of this paragraph will contain spoilers. Episode 1 raised lots more questions, my parents were completely baffled. Hopefully things will become clearer as the series progresses but I know yet more questions will be raised before we get answers. I can't wait to find out more about where the series is going to go and how Sam Tyler is going to fit into it. I think in that episode they were trying to make us think that Gene killed Sam, but I'm sure he wouldn't have done. I suspect he knows more about Sam's death though. I also wonder if maybe Sam isn't really dead, because his body was never found. Who knows! I'm not sure how the man that kept appearing to Alex was, that wasn't Sam. I assume that was the body that was discovered on the TV too but I'm not sure where that fits yet. Maybe Gene killed him. I was really disappointed that Chris and Shaz had split up :( From the clip of next week's episode it looks like Shaz is going to leave, I really hope not. I loved the use of music again, Sweet Dreams when the Quattro was unveiled was great. And the lines seem to be as sharp and funny as ever, I loved Gene's suggestion to Ray about hazelnuts and squirrels, hehe.

Continued here.