Long overdue update

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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