Busy busy busy

I have a feeling before I even start writing this that it might be a long update. So sorry in advance for that.

I had planned to have a quieter and more relaxing week this week, but that hasn't happened as I've continued to do too much :P On Mon afternoon I had a hygienist appt as Hosp A. That went smoothly, including the journey which only took 40mins, we usually leave an hour and 15mins for it! Each time I see the hygienist she gives me a score of what percentage of my mouth is dirty. The first time I saw her before I got braces my mouth was 35%, last Sept it was just 18% and on Mon it was just 12%, so she was happy with me :)

Then on Mon evening F called round (unexpectedly, she just phoned up 10mins before and asked if I was free) to exhange Christmas presents and for a chat. I gave her an incense gift box which she loved and she gave me this lovely glass dolphin ornament.


It was nice to catch up with all her news, but I can't believe how busy she is - she attends college where she does a music course 3 days a week, works at a secondary school teaching music 2 days a week and works in a music shop on Saturday! Phew! So I guess I can understand a bit better now why she had to cancel on me twice previously. It's always tricky to get friends to go when I'm exhausted, I need to learn to be more assertive there I think, so she stayed for about an hour and I was tired to start with! But it was nice to see her :)

Yesterday I had no plans, but wrote myself a huge to-do list in the morning and spent most of the day working through that. I phoned up a special phone number in the Radio Times to order 2 Doctor Who souvenier books of the David Tennant and Russel T Davis years (one for me and one for Claire for her birthday in April), phoned the dentist to make myself an appt (because I wasn't able to make my last one), filled out a sociology questionnaire to help a friend with her coursework, filled out my CRB check form so I can become a regional contact for AYME, went to the shop to buy a Radio Times, started to write a letter to my penpal in Myanmar (Lizzy's husband's niece), replied to various emails, phoned the GP surgery pharmacy to chase up the high calorie puddings I'd ordered, emailed my dietician to let her know that the surgery couldn't get the puddings in for me, send her my food and symptom diary and let her know my weight...

My weight yesterday was 51.2kg. So I emailed my dietician to let her know that in the morning because we'd previously agreed that once I reached 51kg I could try without overnight feeds and see how my weight went with just normal eating and high calorie supplements. But in response to my email my dietician suggested seeing if my weight was still above 51kg in a week's time and then dropping my feed down to 2 nights a week! I was sure that wasn't what we'd previously said so emailed her back. She then replied and said that she was emailing me from home, so because she didn't have my notes she'd forgotten what we had agreed. But she said that I could drop feeds completely if I was confident that my tummy pains wouldn't stop me eating enough to maintain my weight. So now I'm having doubts. Yesterday the local pharmacy told me that they couldn't get the high calorie puddings in for me. So yesterday I had a Fortisip drink that really didn't agree with me (even drinking it diluted with cow's milk and very slowly), so I'm not having one of those again. My dietician couldn't understand why the pharmacy couldn't get the puddings for me, so said she'd chase them up. She also suggested staying on the same feed plan this week and then reviewing it next week as hopefully the high calorie puddings would be sorted by then. So I'm still on feeds for now. I know it might not be for much longer, but I'm not feeling as optimistic now about getting off them as I had been previously. However this morning the pharmacy rang and they've sorted the puddings so we picked the first batch up today :)

Yesterday evening I felt awful. I was completely exhausted and had a headache. And on top of that I felt really fed up and depressed. It wasn't anything in particular, just a mixture of things (with the discussion with my dietician about my feeds being the last straw) all made worse by complete exhaustion.

Recently I've heard some more news on Imy. She's now about 3 weeks post transplant. She is well enough to stay in a hospital flat (which is 10mins away from the hospital) every night, only returning to the ward to see the doctors and have bloods taken each day. And the rest of the time is her own. And she's now been off TPN and enteral feeds (so is just sustaining her weight via normal eating) for over a week. I'm really pleased for her, but as awful as I feel saying this, I'm jealous. I feel like she's made more progress in 3 weeks than I have in over 3 years. 3 weeks after my transplant I was really ill, returning to theatre every other day, completely out of it with the huge amounts of Morphine I was on... Yet 3 weeks after her transplant Imy seems fine and doesn't even need to stay in hospital any more. And I'm still on artificial feeds because my eating isn't at normal levels yet, but Imy doesn't need artificial feeds any more. I hate myself for feeling like this, but I do. And that is partly what contributed to me feeling so down last night. I just want to be normal and being normal isn't being on overnight feeds or having ME. My health relating to my ME is declining, but I know it's because I do too much. I need to learn to pace, but it's so hard. Smaller things are now leaving me more exhausted than they have before.

The news on M is also good. She's had a brilliant week, her mum said it couldn't have gone any better. She's been back on the ward for over a week now, her remaining bowel has stopped bleeding and is working a little, she's in less pain so her major pain relief is being reduced and she is much brighter - sitting up in bed, playing and colouring :)

Because I was feeling so rough yesterday evening I got into bed at 10am and was asleep shortly afterwards. I didn't get up til 10.30am this morning, so had loads of sleep last night. It was a bit disturbed from 7am though when the rest of my family got up. I've felt in much better spirits today and have been more cheerful. I've not felt refreshed by the sleep though and have still been very tired (although probably not quite as exhausted as yesterday) and have had a headache again. And my teeth have been sore today, but I'm not quite sure why. I suppose it's probably just because my braces have been moving my teeth.

I went to the post office this morning to post off my completed CRB check form and some identity documents via recorded delivery. I know that my CRB check could take a while to be processed, but I'm getting closer to becoming an AYME regional contact :) And I went to the surgery to pick up my high calorie puddings and on the book stall there was a big book about films (RadioTimes Guide To Films - 2004 edition) for just 50p!

Today me and mum went to a local craft shop. It's connected to a place which has loads of birds of prey that they look after and fly in flying displays, but we didn't visit that today. In the craft shop mum bought 2 balls of wool to knit dad some wristwarmers. I bought a watch from there last year but when it came to changing the clocks last Oct I discovered that I couldn't change the time on it. So I took my old watch back today and although I didn't have a receipt I was allowed to swap it for a new one :) My old watch was black, but there weren't any more black ones, so I had to buy one which is a bit brighter. I also bought a pretty bracelet for my cousin Tam's birthday in Feb and a beautiful bracelet for me :) I wanted to post up some photos of my new watch and bracelet, but I can't get them to upload at the moment, so they'll hopefully come with my next blog post.

And then we had some yummy toasted teacakes in the cafe, it was the first time I'd tried them :) On the way home we spotted some funny sights. It's really flat around where we live, so both me and mum couldn't understand it when we saw a proper signpost for a local village mountain rescue! We also saw what looked like a bird of prey sitting in a field, which we assume must have escaped and then we saw a pet cat sitting at the edge of another field. Not sights you see everyday! :P

My dad is away tonight with work, but it feels really odd because he's always here. However I did speak to him on the phone this evening :) He can be very annoying at times, he attempted to sign up to Facebook this week just to annoy me. He quickly gave up though as it was too technological for him, hehe.

If I feel up to it tomorrow I might go and visit my Nan and then on Fri eve Claire is coming round :) I'll try not to overdo it as much on the Wii this week though :P

As you may know from past blog entries I love Pixar films. I've just recently discovered that they have produced art books about the art of their films, which are titled 'The Art Of...' So I enjoyed looking at those on Amazon the other night. They are all quite expensive though.

A little while ago the Daily Mail put up a poll on their website asking people to vote on whether ME is a genuine illness or not. I wasn't happy and it really upset some of my friends with ME. The Daily Mail wouldn't have done that with any other illness. So lots of people complained and the Daily Mail apologised :) That doesn't make it right though, they shouldn't have published the poll in the first place. If you're interested you can see a copy of the email that people who complained received here on a blog I follow from an ME sufferer.

Scotland have just produced and launched an organ donation teaching resource pack which will be distrubuted across schools in Scotland so that pupils can learn about organ donation. I think it is a fantastic project and can't understand why we haven't got the same in England. You can view the actual video that is in the pack here, you can read the press release here and you can read a BBC news article on it here. I know Aaron and his family well and I have spoken to Rachel's family on online transplant forums.

Thanks to everyone who read and commented on my last blog update about my new challenge, 101 in 1001. If you've not read that post yet, you can see it here. And hello Kate :) I'm still working on my list and currently have just over 80 possibilities for it, so I need to try to come up with some more. Any ideas would be appreciated. When I've finished I'll post my list up here as well as on the official Day Zero website.

I know it's not important in the grand scheme of things, but I am intrigued as to whether one of my regular blog readers left the anonymous comment on this blog post, or whether it was from someone who doesn't usually comment. So if it was you who left the comment and you feel like letting me know, then please do :)

On Sun evening I sat down with my parents and we watched the whole series 3 of Gavin and Stacey in one sitting. Probably not sensible, but very enjoyable :P And since my last update we also watched the special features on that DVD and I've watched another Vicar of Dibley episode.

On TV I've watched the Brits Launch Party (which featured some great performances from Ellie Goulding and Pixie Lott), Nurse Jackie, a Victoria Wood programme with mum which went behind the scenes of her 2009 Christmas special, 2 Film 2010s (from which I've decided I don't want to see anything in the cinema at the moment, but might want to see some films towards the end of this month and next month) and some of the music channels, where I saw this music video from Erik Hassle (he's not too bad, but I don't get his appeal) and a programme about the Saturdays (I like most of their music, but every single time I've seen them perform on TV they've mimed!). And tonight I watched some of the National Television Awards. I got bored part way through though because they were doing too much about soaps, so I didn't finish watching it. But I was pleased that Gavin and Stacey won their award and Doctor Who won its award. I liked Joe McElderry's performance, but turned it off before Jedward's performance so didn't have to watch that, phew!

I was disappointed that Fireflies by Owl City didn't top the chart on Sun, it only reached number 2 in the Official UK Top 40. I bought it yesterday though because I forgot to before Sun. I was disappointed to read in an interview that Alexandra Burke wont be touring this year :( I love her album and have listened to it through while writing this update. It's taken me so long that I'm Pixie Lott's album now though because that finished :P Anyway, hopefully Alexandra Burke will tour in 2011, but that seems a long time to wait. A website called Popjustice reviewed Diana Vicker's upcoming debut album which I thought was interesting because I loved her on the X Factor and have been looking forward to the release of her album. If you're interested, you can read the review here.