Overdue update

Sorry it's been a while since my last update. I was surprised that my last update hasn't had any comments yet. I don't mind people not commenting, but if a post doesn't get any comments then it makes me wonder whether anyone has read it or not. So if you missed my last blog update, please have a look here. Thanks.

My sleep hasn't been very good this week as I'm still very nocturnal. I've been going to sleep between midnight and 1am, but have been struggling to get up before 10/10.30am most days. Usually I sleep well through the night and when I wake I get back to sleep very quickly, but on Mon night/Tue morn I was awake for about an hour in the early morning, which is very unusual for me. And I had a very rude awakening early Thur morn when I woke to discover one of the caps had come open on my NG tube so the feed that was supposed to be going into me was actually being pumped all over me and my bed!!

My tummy aches haven't been too bad at all this week, so I suspect rice may have been one of the triggers. But I am still getting them a bit.

On Tue my weight was up 0.9kg to 50.7kg, yay! :D We're not reducing my feeds again yet though as I might lose some weight over the next few days with my hospital admission, so we'll wait to see how my weight goes.

I'm going into Hosp B tomorrow til Tue for routine tests. Dad will be staying with me, which I'm a bit nervous about because I'm not sure that he understands my ME (I think he often thinks that I'm just being lazy). I'll be staying in the hotel at night and will be on the transplant ward on Sun, but on the medical day unit (MDU) on Mon and Tue. The hotel has free wireless broadband in the rooms, so I'm hoping to take my laptop with me and access the Internet on it in the evenings if I get chance. I have to be on the transplant ward for midday tomorrow for bloods. I can't remember if I mentioned this in a recent blog or not, but a little girl called M who had her transplant shortly after mine and was in for her assessment when I had my transplant is currently very ill with severe rejection in Hosp B. I think she's 4 and she'd been doing fantastically until about 3 weeks ago when she suddenly became very ill. So her and her mum are currently on the transplant ward in Hosp B. So I'm hoping to see them on Sun, but I do wish it was under better circumstances. Get well soon M.

Then Sun aft/eve we'll go to the hotel where I'll watch the X Factor final :D Tue I've got to be on the MDU for 8am (eeek!) for my scopes (endoscopy and colonoscopy) which I'll be having under GA. The scopes are to check the health of my transplanted bowel and to see if a cause can be found for my tummy pains. I've had loads (50+) anaesthetics before with no problems, but I'm a bit nervous about this one because my last one may have triggered my ME and I know sometimes GAs can cause the health of people with ME to decline. Then Tue I will be having a kidney test because my immunosuppressant (Tacrolimus) can damage the kidneys, so my kidneys just need to be monitored. And after that I'll be allowed home :D

I made a list of what I needed to pack for my hospital stay, so the actual packing was easy :) And I had some worries and concerns, but after talking them through with mum yesterday I now feel better about them.

On Tue I tried again to reschedule my ESA medical assessment, but again I couldn't get through on the phone. So that day I wrote and posted a letter to them asking them to phone me to reschedule it because I couldn't get through to them on the phone. I'm still waiting to hear, but if they don't phone mum while I'm away in hospital, then I'll try them again when I get home.

On Thur I heard that an old friend, I, from Hosp G had just gone on the transplant list. She isn't life threateningly ill, but has a very poor quality of life at the moment on TPN. So she's opted for a small bowel transplant to hopefully improve her quality of life. I think I mentioned a while ago that she was really struggling with the decision because animals are her life and they are a risk after transplant. She wont be having her transplant at Hosp B or Hosp A though, she'll be having it at a different hospital which has only just started doing small bowel transplants.

On Tue morn my new laptop was delivered, so I spent most of the day playing with it and I love it :D However I think my new laptop deserves a post of it's own, so I'll try to write that post soon :) Mum's friend Jilly came for lunch on Tue, so I had a break from my new laptop then to join them for lunch. And Tue eve I rang Lizzy for a chat and hopefully we'll be able to see her and her family between Christmas and New Year :D

On Wed aft me and mum went to visit nan in hospital. All her scans so far have come back clear, so she's waiting for yet more tests and scans. She's in good spirits though and has relatives visiting her every day :) Then there was an infection on the ward, so I've not visited my nan again since just in case I was to pick something up before I went into hospital. The infection has cleared up now though so if she's still in hospital next week I'll start visiting her again. No-one knows yet how long she'll be in for. And then Wed eve Claire came round which was lovely. And we had loads of fun and laughs playing on New Super Mario Bros Wii together :D

On Thur I arranged for an old friend to come round yesterday aft. But she's not very reliable so I wasn't really surprised when she cancelled at midday yesterday. So yesterday aft me and mum went into town instead :) I bought another Christmas present for nan (a calendar titled 'For My Nan' which contains sentimental verses - she'll love it), a birthday present for Lizzy's birthday in March and 2 DVDs for myself at bargain prices from a charity shop :D

Today I've not been doing much, but I had great fun playing on New Super Mario Bros Wii with my dad earlier :D He kept telling me he had no idea what was going on though :P

Tonight I've had a great TV night :D First I watched Cheryl Cole's Night In which was quite good :) I think Cheryl Cole's new single, 3 Words, is awful though! :P Then I watched The X Factor. I'm really pleased that Joe got through as he's my favourite, but I'm disappointed that Stacey went out as I really liked her. I think she should have got through instead of Olly. I hope Joe wins tomorrow, fingers crossed. And now I'm watching The Xtra Factor :)

On TV this week I 've also watched Mika at Mencap's Little Noise Sessions, Alesha Dixon: Who's You Daddy?, Film 2009, Kidnapped by the Kids and The Restaurant. I can't believe how this series of The Restaurant is going. There are now 2 couples left in the competition and the final will be on Thur. The chef in one of the couples can't cook! And in the other couple the chef serves cold food and the front of house is really rude! There weren't many decent couples in it to start with, but they've all gone out leaving 2 rubbish couples in the final.

I've watched a couple of DVDs this week. I watched S Club Carnival which brought back loads of memories as they were my favourite group when I was younger and I even saw them live in 1999! And I watched a disappointing film called Scrooged and an amazing film that I'd highly recommend called Girl Interrupted.

I watched a Vicar of Dibley episode from my boxset and have been waiting for the next series of Absolutely Fabulous from the library. I ordered it just over a week ago and it was on the shelf in a library in my county, so I don't know why I've not received it yet. I'm a bit disappointed because I was going to take it into hospital with me, but never mind. I'll take some Vicar of Dibley episodes with me instead as well as a film or two.

Pixie Lott's Turn It Up CD arrived on Fri, so I've put that on my iPod now so I can listen to it while I'm in hospital :) My favourite songs from it are currently Band Aid, Turn It Up and Here We Go Again. I currently really like Alexandra Burke's Overcome album on Spotify and her next single - Broken Heels.

I mentioned before that I'd been attempting to read a children's book called Coraline, but was struggling with it because of my poor concentration and memory. I gave up on it and sent it back to the library last night. I have flicked through and read little bits of a really interesting book about Tim Burton's films though :)

In the post on Tue I received my official International Baccalaureate certificate :D This week we've also received quite a few Christmas cards and this morning I received a parcel containing my Foggy Friends Secret Santa present :D

When I get home from hospital next week we'll be putting our Christmas decorations up. Yay! :D Then hopefully I'll start feeling more Christmassy :)

My friend Holly C (whose blogs you can read here and here) is a brilliant photographer and she has just set up an online shop to sell some of her work which you can have a look at here.