Update - pre-Christmas

Sorry for not updating my blog for a while. Rather than doing one long update, this update will be pre-Christmas (Sun 20th - Thur 24th). Then I'll write an update about Christmas Day and then get myself up to date with an update from Christmas day onwards. Hopefully it should be easier for you to read that way :)

Last Sun I went to my first AYME meet-up at Lucy's house. When I joined AYME I asked to be put in contact with my regional contact (RC) to hear about local meet-ups etc. I was told that there isn't a RC for my county, but Lucy was my nearest RC in a neighbouring county. She seemed really nice and we got chatting via email. Lucy then told me that she was organising a Christmas AYME meet-up and asked if I'd like to attend. So that was where I went on Sun.

Mum and dad gave me a lift to a town about 20 miles away and then I caught a direct train from there to Lucy's town (which took about 40mins). I was collected at the station by Lucy and her dad. Some of the people at the meet-up were a bit odd, but most of them were really nice and I tried not to be too shy, so chatted to a few people and got on quite well with one girl in particular. There were loads of new people there though (Lucy, her parents and her sister and then 8 other ME sufferers) so it was quite overwhelming. Most of the others are either too old for AYME now or don't really use it. We also did a Secret Santa. I gave one of my mum's knitted cupcakes, but I don't think that the girl I gave it to liked it. I received The X Factor Annual 2010, which I wouldn't have bought myself, but it was good to flick through. So I had a nice but tiring day - I was out the house for 8 hours in total though the meet-up was only for 4 hours. My train back was cancelled, but luckily I only had to wait 30mins for the next one. And I froze on the train journeys, brrrr.

During the car journey home that evening, I listened to the chart show on Radio 1. I was very disappointed that RATM were number one :( What a rubbish song! Never mind, hopefully Joe will be number one on Sunday.

I was exhausted on Sun evening, so when I got home I watched The Gremlins on DVD with my family. What an odd film!

I had a very busy day on Monday. I got up earlier than usual as I needed bloods taking at Hosp H (because my liver function tests were raised when checked during my stay at Hosp B). I couldn't believe the length of the queue when we got there though, there must have been 15 people waiting to see just 1 phlebotomist! So me and mum turned round and went home, planning to return later. I couldn't leave it any later to take my morning dose of Tacrolimus (one of my immunosuppressants), so I took some blood to test the level of that at home via a fingerprick and posted it off to Hosp B to process it, so I could then take my Tac.

The post came very late that day, but we got some Christmas cards and I got 2 Christmas parcels (from Lizzy and my cousin Tam). While we had lunch we watched The Snowman on DVD :) I love watching that as it's so Christmassy. I did notice though that when the little boy gets dressed, he doesn't put any underpants on! :P

On Mon afternoon we went to the local garden centre to buy some lights for our Christmas tree. Then we headed back to the hospital for my blood test and this time there was no queue at all! Apparently the phlebotomist I usually see has retired, so instead there was a new phlebotomist and a more experienced phlebotomist supervising her. They were rather iffy with me though. I'd not met either of them before, so told them how the lab usually fax my blood results through to Hosp B. I was told that the lab wont fax results! But they've been faxing mine to Hosp B for 3 years :P And then I told the new phlebotomist that the veins in my elbows were rubbish, but she asked to look anyway. Then she saw that they really were rubbish and got cold feet so the more experienced phlebotomist took my blood. I'm not sure what will happen when I return next as I got the impression that the new phlebotomist will soon be doing it on her own! Then I had to hold the cotton wool on to stop the bleeding, but they'd left the torniquet on my arm, which surely couldn't have been helping, so I undid it myself (I know how to after all these years of blood tests) and they looked so shocked! :P Hehe.

While we were at the hospital we called in to visit my nan, who was in good spirits :) We also bumped into my aunt (dad's sister) there, who can be quite overpowering and stayed for a lot longer than she originally said she would. Never mind. My aunt had celebrated Christmas day early with her family (as both of her children wouldn't be with her on the 25th), so she thought that on Fri to prevent my nan feeling guilty about not managing to get presents organised yet we should treat the day as her birthday, not Christmas. I understand that my aunt had already had her Christmas, but we wanted Fri to be Christmas for us. And my aunt was also trying to organise us all to visit nan on Christmas day, as she wanted us all to be there together. We wanted to go at a different time to her though. It all worked out ok in the end though :)

On Mon evening Claire came round. We had a yummy tea (pigeon) and then played on my Wii together :) After that me, mum and Claire decorated our Christmas tree together which was fun. It was snowing at the time, so we opened the living room curtains so we could watch the snow falling outside. It settled too and stayed for a few days :)

Here are a few photos of the snow out of the back windows of our house:


And here is a photo of the snow out of the front of our house after it had started to melt a bit:

We sang Christmas songs while decorating the tree - well mum and Claire did and I laughed at them :P Our tree looks a bit tackier than usual, but I like it. I'll post a photo of it on my Christmas update post.

On Tue I weighed myself and my weight was down a little, by 0.3kg, to 50.5kg. I emailed my dietician about my weight and she replied that evening. The plan now is for me to stay on 3 nights of feed per week until my weight reaches 51kg and then we'll try stopping the feed completely! :D I also enquired about trying some different high calorie drinks as I'm not getting on very well with the Fortisips and so my dietician has arranged for me to have some different samples of high calorie drinks and puddings delivered in the new year.

I didn't feel too well on Tue, in fact I've been feeling quite up and down this week. I suspect that is because I've been quite busy though. My tummy pains have still been bad, so I need to contact my consultant about that. And I've been getting headaches most days too :( They're not too severe, but they are annoying.

I discovered that Diana Vickers, my favourite from the X Factor 2008, will be touring in March, but after looking into it I realised that the venues she will be performing at only have standing tickets available. So I didn't buy any, but am hoping that if her album does well when it's released then she might perform at some bigger venues with seating, fingers crossed.

I watched some programmes on our hard disc recorder to try and free up some more space. I watched Jonathan Ross who was interviewing Rihanna (who seemed lovely) and Hugh Grant (who just seemed really cocky and arrogant). I also watched a programme about Pixie Lott and her music called Pixie Lott Takes Off. And on Tue I also watched a couple of DVDs. Shrek The Halls made me feel Christmassy and I finished watching the Tim Burton film I'd started called Ed Wood.

Then I went out in the snow (brrrr) to do some errands. I posted a rental DVD back, bought some parsnips from someone's house round the corner and delivered a Christmas present to a neighbour. And we also put all of the Christmas presents under the tree :)

We had all planned to go out to the cinema on Tue evening (me and mum to see Nativity and dad and Alf to see Avatar 3D), but that didn't go to plan. I didn't feel up to going out, so me and mum decided to stay in and watch Love Actually instead. So the boys set off to the cinema, but soon came home again because Avatar 3D was completely booked up! So instead of watching Love Actually with mum, together with my parents I watched Blackadder's Christmas Carol on DVD and a TV programme called The Funny Side of Christmas. And I got to bed quite early for me - about 11.30pm I think.

On Wed morn I slept through my 9.30am alarm and got up at 10.20am. I felt very sleepy though and continued to feel sleepy throughout the day. While I was still in bed that morning my mum went out and did a Tesco shop. And she got home before I got up!

Claire popped back round to deliver our homemade cards which she'd forgotten to bring on Mon. And she also lent me her 2 Wiimotes because she was going away for Christmas, so wouldn't be using them, but I quite fancied trying out 4 player on New Super Mario Bros Wii :) That afternoon me and Alf played on my Wii together again, which was good fun.

Hosp B rang me because they hadn't received any blood results from Hosp H (so they obviously hadn't faxed them through!) and when they'd rung the lab to chase them up, the lab claimed to know nothing about them! So I confirmed that I had had my bloods taken on Mon and the liver nurse I spoke to said she'd try again to get hold of the results. Later on Wed the liver nurse rang back and said she'd got hold of the blood results, phew! I was told that my LFTs were a bit lower than they had been, but were still high. And the level of my immunosuppressant, Tac, in my blood was low. That was a surprise because my Tac level had been stable for so long. I don't know why the level of that might have dropped, as I'd not missed a dose, but that could account for my high LFTs. So I was told to double my Tac dose (which seems a bit drastic to me as I suspect that might send my Tac level high above my target level) and have my bloods repeated on Tue.

Mum and Alf went to visit nan in hospital and while they were out I watched Jack Frost at home. I thought it was quite good, but am not sure if I'd watch it again. We had spare ribs for tea, which caused me some problems due to my lack of experience with eating. I assumed that everything but the bones were edible, but then I was told to avoid the gristle which completely threw me - I had no idea how to tell what gristle was, so how could I avoid it? And if I got some in my mouth by accident, my skills with my mouth and tongue aren't developed enough to easily eat the rest of my mouthful and just spit the gristle out. So my parents very kindly went through the meat on my plate for me and took the gristle out. And then to top it all off at the end of the meal I discovered that my braces had broken! What a day for that to happen - of all the days in the year, why Christmas Eve eve?! So I decided to ring the orthodontist for advice the next day.

After tea with my family I watched my favourite Christmas film - The Greatest Store In The World. That made us all feel very Christmassy :D Then we watched some Christmas music videos on the music channels before I went to bed at 11.20pm.

On Thur (Christmas Eve) I got up at 9am, which is very unusual for me! I felt tired and had tummy pains that day though. I phoned the orthodontist about my broken braces and they said that as long as they're not causing me any pain or discomfort, which they weren't then, then it'd be fine to wait to have them fixed at my next scheduled appt on Dec 31st :) Since then I've been having problems with them though. The problem is that the wire has popped out of one of the brackets, but now the wire is a bit further out than usual, so when I slept on that side the wire sliced my cheek. Owwww! I'm seeing if I can protect it with orthodontic wax, as due to a busy few days next week I wont be able to get to the orthodontist any earlier than Thur.

I did a jigsaw with mum that morning and then Chris and Sophie came round as it was Chris' 30th birthday. It was nice to see them and I also enjoyed winding Chris' up about how old he was! :P

When they left, me and mum went on a walk round the village to call in at the library and to get the Independent newspaper (which was sold out in the first 2 shops we tried, but then we got a copy in the third and final shop in the village). All the snow had frozen and turned into ice, so it was very slippery underfoot. And I slipped on the ice and fell over. I grazed one knee slightly, but didn't get any cuts thanks to my many layers of clothing protecting me. I think I've hurt a tendon in my right forearm though, from putting my hands out to save myself, because it's been quite painful over the last couple of days. Hopefully it'll feel better soon.

When we got back home it was a lovely surprise to find that Dad had got home from work early :) Dad and Alf popped out to Tesco to look for some cheap turkeys for Christmas dinner, but they didn't find any. So they bought a chicken for Christmas dinner instead and got a very cheap whole salmon, which we ate some of for tea (with baked sweet potato and sweet and sour sauce - yum!). And mum, dad and Alf had some champagne with peach juice for tea, but I didn't like the taste of the champagne at all - yuk! So instead I just had the peach juice, which I liked the taste of.

After tea I played on my Wii with dad and Alf which was hilarious! :D Then I helped dad to sort out one of his Christmas presents for mum - a digital photo frame keyring. In secret we charged it up and loaded some photos onto it.

Before going to bed we watched Victoria Wood's Midlife Christmas, which wasn't as Christmassy as I expected, and a great QI with David Tennant on it :) And then I went to bed at 11.30pm. I woke about 3 times during the night though.