On Fri I felt a bit more down than usual in the morning but I was ok. I discovered that my slippers were about to fall apart which is frustrating because I've not had them very long. I think that my feet are too wide for them so they've burst the stitches. I definitely need to do a clothes shop soon because all my clothes seem to be falling apart! That morn I had a chat to my parents about my rent and it's been increased slightly but the monthly amount is still manageable out of my benefits money.
That aft me and mum were going to go and see my nan, but I had bad tummy pains again so decided to stay at home while my mum went out. I don't know why my tummy pains have got a lot worse over the last few days. I did miss one dose of Amitriptyline but wouldn't have thought that would cause this. I'm only on a very small dose of Amitriptyline so am going to ask my Hosp A consultant when I see him in a couple of weeks if increasing my dose might help. My next clinic is now just 2 and a half weeks away and I'm still not happy about completing my transition then, so will let the team there know that when I see them. I'm still waiting to hear back from S about my questions relating to Tac bloods.
I was sorry to miss seeing my nan on Fri so hopefully I'll see her at some point this week. My tummy soon felt a bit better so while mum was out I watched a DVD called Jumper which I enjoyed more than I expected.
Then I heard that Ellie Goulding had announced dates for a UK tour in Oct/Nov and would be coming to a seated venue near me. I saw her supporting Little Boots last Oct but didn't know her or her music then so would love to see her again now I know more of her songs. The tickets go on pre-sale on Wed morn so I'm going to try to get some then. I'm waiting to hear from Claire about whether she'll be free to come with me and mum.
On Fri I really struggled with eating my tea. Generally I'm finding eating a bit easier at the mo but sometimes I do really struggle with it. That eve I really enjoyed watching the penultimate episode of Ashes to Ashes with my parents. I can't wait for the final episode on Fri but also really don't want it to end. Before I went to bed that night I listened to Diana Vickers' album, Songs from the Tainted Cherry Tree, and Little Boots' album, Hands. I've been listening to Diana Vickers' album a lot but that was the first time I'd listened to Little Boots' album in a while so I enjoyed that.
I didn't feel too good on Sat but I didn't feel too ill. I really struggled to get up in the morn, I was more tired than usual, my feet ached all day (not the pain I usually get but just lots of aching like I'd done too much walking the previous day, but I hadn't) and I felt quite lightheaded at one point.
Something I struggle with at the moment is wearing clean clothes. They often feel very uncomfortable for an hour or two when I first put them on, especially my jeans. I thought this was just me being weird but I've recently discovered that having oversensitive skin can actually be a symptom of ME. I don't think there's anything I can do about it though. I also find that finding new clothes that are comfortable is very difficult so I'm not looking forward to having to replace all my clothes that are starting to fall apart.
That morn I watched Embarrassing Bodies: Kids on 4OD. I was very excited to receive a text as I thought that meant my mobile was working again, but it wasn't. I had a little look at my DLA forms and I relieved that they don't look too hard to fill out as it's mostly just ticking boxes. Not sure how I fit into their categories though, so I suspect I might end up losing my DLA. I've decided that I'm going to try to get them completed and sent off before my parents and brother head off to Glastonbury in just over a month. I just need to find a time when dad can have a look at them with me.
While I wasn't feeling so good I listened to The Family Jewels by Marina and the Diamonds on my iPod. Then Chris popped round. It was nice to see him and he stayed for tea. He's going to try a different job so he was telling us about that. He currently helps to manage a restaurant that is attached to a hotel and he's always worked in bar work or catering (not actually cooking, but managing). However he's decided to go across to the hotel and work there with administration, finances and working at the reception etc. The pay is the same and it's the same hours though at more sociable times. He's interested to learn more about how the hotel works and it'll look good on his CV too. He's starting a few hotel shifts this week and then increasing them over the next couple of weeks. Hopefully it'll all go well for him. His car's broken again and isn't reparable this time. That's what happens if you buy cars from eBay! Chris also had a fiddle with my phone but had no idea what the problem was. Mum remembered that there is a Nokia repair place nearer than a T-Mobile shop so we thought about taking my phone in to be looked at there.
On Sat eve I enjoyed watching Doctor Who with my family. I thought Sat's episode was really good and very original. After that I watched the music channels for a little while and then a good film on BBC3 called Flightplan. That eve I had tummy ache, which isn't a time I usually have tummy ache. This was just an ache though rather than a pain so I managed to get to sleep ok with it.
On Sun I got up about 2/3 hours earlier than I usually would and with my parents I headed out to the annual carboot sale at my old secondary school. I was quite worried about bumping into people I knew there, but I only saw 2 and managed to avoid them seeing me :P At the carboot sale I picked up a couple of things for Claire (an old Take That annual and a Tardis tin), 3 books (the Script book of Juno because I love the film, the novel Stardust which I hope to read at some point because I recently enjoyed watching the film and a children's book by Malorie Blackman which I used to enjoy reading) and 4 DVDs (Beaches, The Magic Bubble, Down with Love and Aardman Classics). When I met up with my parents at the end mum showed me a Nokia 3310 that she'd picked up to me. I've been using it since then and it's fantastic to be able to phone and text again :D The only thing I miss with using an older phone is the camera, but apart from that it does everything I need and should last me til Chris passes his iPhone onto me at the end of Sept.
I felt a bit odd that afternoon which I think was probably due to getting up much earlier than usual. And I also had more dizzy spells than I had been having for the past week or two. Hopefully my dizziness will clear up completely soon, fingers crossed. When I got home from the carboot sale I was really pleased to hear that Tori had received her transplant call. Since then she's had her transplant and it sounds like she's been making really good progress. I don't know Tori personally but have been following her blog for a while now.
I enjoyed doing a couple of little jigsaws and then sorted through the HDR and deleted some recordings. While I was doing that I rewatched the first part of the first episode of the current series of Doctor Who with mum, watched last week's Friday Night with Jonathan Ross (to see Alexandra Burke being interviewed and Ellie Goulding performing) and watched the music channels for a short while. Then I put out all my tablets for the week and made a note of which ones I was running short of.
On Sun eve I rewatched Mamma Mia with my mum. We quite enjoyed watching it together but I don't think it's as brilliant as everyone seems to say it is - it's so cheesy and some of the songs have no relevance at all to the plot (especially The Winner Takes it All which had me and mum in fits of the giggles much to dad's bemusement!).
Later that eve I felt really down about everything and kept crying. I know it's silly as I've not really got anything to be upset about and I know that my health and my life is much better than lots of people I know, so I shouldn't get upset, but you know how it is sometimes.
To try to cheer myself up after that I decided to try out a new Wii game called Okami which had some really good reviews. It looked great but unfortunately the game requires drawing lines with the Wiimote and my hands aren't steady enough to do that so I can't play the game, which is very disappointing. Before I went to sleep I started listening to the latest ONM podcast.
This morn I helped mum out with some errands around the village. We went to the surgery (to drop off a prescription for me and pick up mum's tabs), the library (for mum to do some cleaning and I picked up a Scoubidou book and a DVD), the post box (to post back one of my rental DVDs), a shop (to buy some croissants, milk etc) and another shop (to buy some bread).
While me and mum had lunch we watched the music channels and part of a stand up comedy programme by Dylan Moran. I was also given a link on Facebook to a letter written by Nick Clegg about ME which you can view here. I was very impressed with it.
This aft I had a bit of a meltdown. I don't really want to go into detail about it but I just got really really upset for no real reason and ended up going back to bed for a few hours. I don't know what's up with me at the mo.
This eve I listened to Ellie Goulding being interviewed on a radio programme which you can listen to here. After tea I ate my final high calorie pudding, yay! :D I'm now going to see how my weight goes without having one high calorie pudding each eve. I'll weigh myself tomorrow and then hopefully when I weigh myself again 2 weeks later my weight won't have dropped. I've just watched the 2nd part of Wormwood Scrubs and the 3rd episode of Bizarre ER. I'm currently watching The Graham Norton Show because Ruth Jones is being interviewed and Katie Melua will be performing The Flood later. I'm never been a Katie Melua fan before, but I do like The Flood. I've just been laughing aloud at them talking about accents, very funny.
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Showing posts with label Little Boots. Show all posts
Showing posts with label Little Boots. Show all posts
Monday, 17 May 2010
Sunday, 17 January 2010
Seeing friends and listening to music
As the title of this blog update suggests, I've seen some friends over the last few days. On Wed eve Claire came round after she'd finished work and we went to the cinema together to see St Trinians 2. We both thought it was better than the first film - the plot was stronger, the soundtrack was great and David Tennant was in it too. We had a great time and the film was fun :) And Claire popped in for a drink after the cinema. On Thur afternoon an old friend popped round. Sarah lives just across the road and we used to be very good friends when we were younger. But as we grew up we grew apart. She's away at uni a lot now and we don't have much in common, but it's nice to catch up with her every so often. On Fri eve Claire came round again. She stayed for tea, we chatted a bit and we had great fun playing on New Super Mario Bros Wii together :D
And yesterday mum was feeling well enough for us to go to Lizzy's. Mum wanted to come back before it got dark, so because it's an hour and a half drive that meant we'd need to leave about 3pm. So to spend a decent amount of time with them I got up at 8am yesterday morning (which is very early for me) so we could set off not too late. I was ready to leave the house at 9am, but mum wasn't feeling great, so we left just after 9.30am. On the way we stopped for petrol, so we got to Lizzy's at about 11.20am. Lizzy's husband H soon had to go out to work, so for most of the time it was just me, mum, Lizzy and M. We chatted loads, gave M her Christmas presents, had some lunch there and were very well amused by M. She's 3 years and 8 months old now and soooo cute. She'd just recently learnt to play I Spy so we all played that with her. And she loves dancing and ballet so she enjoyed dancing for us. And she likes to rhyme everything and if she can't think of a rhyming word then she'll just make one up. I was exhausted yesterday and didn't have much energy at all, but Lizzy understood, so it was ok. I was disappointed that I couldn't play with M more though.
H is from Burma, so Lizzy and H are trying to teach M about the Flan (Burmese) culture as well as the English culture. H's first language is Chin and although M understands when he speaks it to her, she wont speak it herself, she'll only speak English. And her parents are trying to teach M both Flan eating good manners and English eating good manners, but the 2 ways of eating are very different - the Flan way of eating is with your hands - so M often gets confused about how she should eat. Yesterday for lunch we had baked potatoes with chilli which M ate with her hands. That made quite a mess! :P And then she tried to eat a slice of cake with a spoon. We headed home at 3.15pm and I fell asleep in the car for a bit because I was so tired. I was awake though when there was a muntjac deer standing at the side of the road - wow! We stopped for drinks (because mum was very tired) and then got stuck at the local level crossing for 5 trains, so didn't get home til about 5.15pm.
I love seeing friends, but like doing anything does, it results in me being exhausted and I have been most days this week :( I've also been stupidly nocturnal, getting to sleep about 2am most nights :P Usually I can remain positive even when I'm feeling exhausted and rubbish, but I am struggling with feeling a bit down today.
I've managed to do a few productive things since my last blog update - I started putting together a draft CV for Pathways to Work but need to do a bit more work on it over the next week, I went to the surgery to order some of the new Fortisip desserts I've tried and got on with ok, I went to the shop/post office to buy the latest Radio Times and post a letter, I've got my spreadsheet which I record all my income and spending on almost up to date (I just need to work out how to fix some broken formulae) and I sorted out my overflowing in-tray on my desk.
I'm still keeping my food and symptom diary, but will finish it this evening. My tummy pains have been worse since Thur (which may have been because I had a Fortisip drink) which is frustrating, but at least I can record something in the diary!
On Wed my watch broke. I got it from Chris for my 16th birthday and had worn it most of the time since then, so it had done well. But on Wed as I took it off the strap just snapped off from the watch face. Dad says it's not repairable. I bought a lovely watch at some point last year from a local craft shop which was made out of coconut shell. That worked well for a few months, but then when it came to the clocks going back we discovered that the knob to change the time wouldn't work. Dad tried and managed to change the time to something odd, but then couldn't change it again. So that watch was then useless. After my watch broke on Wed I felt really lost without one so have borrowed an old wind up one from Mum for the time being. At some point this week though I'm hoping to return to the craft shop where I bought my coconut shell watch from and see if they've got one with a knob that works, fingers crossed.
My Nan finally got home on Thursday after 5 and a half weeks in hospital. I've not been to see her at home yet, but dad visited her on Fri and is going again this afternoon. I've spoken to her on the phone though. She seems ok in herself, but on Fri morn she had a dizzy spell which is a bit of a concern as that's why she was admitted to hospital in the first place. Hopefully they'll get better with time or wont be as bad now, fingers crossed.
I spoke to M's mum on Facebook chat on Wed. M had just got back on to the ward from ICU and was a lot brighter in herself :) I've not heard any more about Imy recently so am going to text her mum and ask how she is.
I posted this blog update a couple of days ago which I've since been adding to since which has links to friends' blog posts in memory of Jess.
On Thursday I discovered that Lou has written a story for the BBC's My Story competition. It's definitely worth a read. You can find it here.
On Thur my monthly Official Nintendo Magazine arrived in the post, so I enjoyed reading that.
Since my last blog update I've just watched 2 films - Madagascar 2 and Be Kind Rewind, which were both funny and I enjoyed watching them, but they weren't anything special.
And on DVD I've watched the final 3 episodes of the second series of Gavin and Stacey plus the special features, one and a half episodes of The Vicar of Dibley and some S Club 7 music videos from a DVD I rented called S Club 7 Best.
On TV I've watched quite a bit of rubbish when I've been nocturnal and bored including Krypton Factor, Half Ton Man, World's Strongest Child and Women Who Kill. I also watched another episode of Tracy Beaker Returns, but according to iPlayer it was the 3rd episode which was televised before the 2nd! :P I tried watching a new ITV programme on Fri night called Popstar to Operstar, but I know nothing about opera so until the judges spoke I had no idea whether each contestant was any good or not, lol. And I watched Friday Night With Jonathan Ross which featured Catherine Tate and Pixie Lott performed too.
I've watched the music channels again because music videos are easy to watch when I'm tired. I also watched an old episode of Live From Abbey Road which featured Michael Buble (who mum likes) and Little Boots (who we both like) and 3 old Jools Holland programmes featuring Norah Jones and Corrine Bailey Ray (who mum likes) and Joss Stone (who we both like a bit). They also contained some stuff dad was interested in too.
I listened to an Ellie Goulding interview on Radio 2 on iPlayer, read this very good article about her in the Independent and listened to some of her music on Youtube. In the Independent article and in the Radio 2 interview she mentions Erik Hassle, who was another support artist for Little Boots when we saw her. None of us were keen on him or his music, so me and Claire think we might be missing something with Ellie Goulding singing his praises and Radio 1 playing his music! You can hear his next single here - what do you think? And this is a single that Ellie Goulding and Erik Hassle covered together.
On Youtube I also watched JLS' new music video for One Shot and a found a clip of Shingai from the Noisettes performing on Jools' Annual Hootenanny. I saw it on TV, but if you missed it you can watch it here. The Noisettes should be good live next month :) And I found this tiny teaser clip of Diana Vickers' (who came 3rd on X Factor 2008) debut single Once, which will be released in April.
I've been listening to Alexandra Burke's Overcome album more, which I still love. And I've listened to Rihanna's latest album Rated R and Cheryl Cole's album 3 Words on Spotify. Rated R isn't unpleasant, but isn't something I'd listen to again, despite liking Russian Roulette. But I thought that 3 Words was horrible and was a huge disappointment! I like Fight For This Love, but dont like the single 3 Words, so was hoping the album would be more in the style of Fight For This Love - but it isn't. Most of the songs are similar in style to 3 Words and Will.i.am features on a lot of them. Some are just about bearable, but some I hated, especially Boy Like You which samples a fantastic Fleetwood Mac song (Little Lies) then ruins it with Cheryl attempting to rap! There was one song on the album apart from Fight For This Love which I didn't mind and it's called Parachute. I might listen to those 2 tracks again but not the rest of the album. I'm glad Parachute will be her next single.
And Siiren is a Fairtrade website that Catherine's mum told me about when they came the other week, but I've only had chance to look at recently. Catherine's mum recommended it because we were commenting on her pretty necklace that she'd bought from there. They sell some lovely Fairtrade jewellery and other bits and pieces for good prices and delivery is free :) I think I might use them for presents in future.
And yesterday mum was feeling well enough for us to go to Lizzy's. Mum wanted to come back before it got dark, so because it's an hour and a half drive that meant we'd need to leave about 3pm. So to spend a decent amount of time with them I got up at 8am yesterday morning (which is very early for me) so we could set off not too late. I was ready to leave the house at 9am, but mum wasn't feeling great, so we left just after 9.30am. On the way we stopped for petrol, so we got to Lizzy's at about 11.20am. Lizzy's husband H soon had to go out to work, so for most of the time it was just me, mum, Lizzy and M. We chatted loads, gave M her Christmas presents, had some lunch there and were very well amused by M. She's 3 years and 8 months old now and soooo cute. She'd just recently learnt to play I Spy so we all played that with her. And she loves dancing and ballet so she enjoyed dancing for us. And she likes to rhyme everything and if she can't think of a rhyming word then she'll just make one up. I was exhausted yesterday and didn't have much energy at all, but Lizzy understood, so it was ok. I was disappointed that I couldn't play with M more though.
H is from Burma, so Lizzy and H are trying to teach M about the Flan (Burmese) culture as well as the English culture. H's first language is Chin and although M understands when he speaks it to her, she wont speak it herself, she'll only speak English. And her parents are trying to teach M both Flan eating good manners and English eating good manners, but the 2 ways of eating are very different - the Flan way of eating is with your hands - so M often gets confused about how she should eat. Yesterday for lunch we had baked potatoes with chilli which M ate with her hands. That made quite a mess! :P And then she tried to eat a slice of cake with a spoon. We headed home at 3.15pm and I fell asleep in the car for a bit because I was so tired. I was awake though when there was a muntjac deer standing at the side of the road - wow! We stopped for drinks (because mum was very tired) and then got stuck at the local level crossing for 5 trains, so didn't get home til about 5.15pm.
I love seeing friends, but like doing anything does, it results in me being exhausted and I have been most days this week :( I've also been stupidly nocturnal, getting to sleep about 2am most nights :P Usually I can remain positive even when I'm feeling exhausted and rubbish, but I am struggling with feeling a bit down today.
I've managed to do a few productive things since my last blog update - I started putting together a draft CV for Pathways to Work but need to do a bit more work on it over the next week, I went to the surgery to order some of the new Fortisip desserts I've tried and got on with ok, I went to the shop/post office to buy the latest Radio Times and post a letter, I've got my spreadsheet which I record all my income and spending on almost up to date (I just need to work out how to fix some broken formulae) and I sorted out my overflowing in-tray on my desk.
I'm still keeping my food and symptom diary, but will finish it this evening. My tummy pains have been worse since Thur (which may have been because I had a Fortisip drink) which is frustrating, but at least I can record something in the diary!
On Wed my watch broke. I got it from Chris for my 16th birthday and had worn it most of the time since then, so it had done well. But on Wed as I took it off the strap just snapped off from the watch face. Dad says it's not repairable. I bought a lovely watch at some point last year from a local craft shop which was made out of coconut shell. That worked well for a few months, but then when it came to the clocks going back we discovered that the knob to change the time wouldn't work. Dad tried and managed to change the time to something odd, but then couldn't change it again. So that watch was then useless. After my watch broke on Wed I felt really lost without one so have borrowed an old wind up one from Mum for the time being. At some point this week though I'm hoping to return to the craft shop where I bought my coconut shell watch from and see if they've got one with a knob that works, fingers crossed.
My Nan finally got home on Thursday after 5 and a half weeks in hospital. I've not been to see her at home yet, but dad visited her on Fri and is going again this afternoon. I've spoken to her on the phone though. She seems ok in herself, but on Fri morn she had a dizzy spell which is a bit of a concern as that's why she was admitted to hospital in the first place. Hopefully they'll get better with time or wont be as bad now, fingers crossed.
I spoke to M's mum on Facebook chat on Wed. M had just got back on to the ward from ICU and was a lot brighter in herself :) I've not heard any more about Imy recently so am going to text her mum and ask how she is.
I posted this blog update a couple of days ago which I've since been adding to since which has links to friends' blog posts in memory of Jess.
On Thursday I discovered that Lou has written a story for the BBC's My Story competition. It's definitely worth a read. You can find it here.
On Thur my monthly Official Nintendo Magazine arrived in the post, so I enjoyed reading that.
Since my last blog update I've just watched 2 films - Madagascar 2 and Be Kind Rewind, which were both funny and I enjoyed watching them, but they weren't anything special.
And on DVD I've watched the final 3 episodes of the second series of Gavin and Stacey plus the special features, one and a half episodes of The Vicar of Dibley and some S Club 7 music videos from a DVD I rented called S Club 7 Best.
On TV I've watched quite a bit of rubbish when I've been nocturnal and bored including Krypton Factor, Half Ton Man, World's Strongest Child and Women Who Kill. I also watched another episode of Tracy Beaker Returns, but according to iPlayer it was the 3rd episode which was televised before the 2nd! :P I tried watching a new ITV programme on Fri night called Popstar to Operstar, but I know nothing about opera so until the judges spoke I had no idea whether each contestant was any good or not, lol. And I watched Friday Night With Jonathan Ross which featured Catherine Tate and Pixie Lott performed too.
I've watched the music channels again because music videos are easy to watch when I'm tired. I also watched an old episode of Live From Abbey Road which featured Michael Buble (who mum likes) and Little Boots (who we both like) and 3 old Jools Holland programmes featuring Norah Jones and Corrine Bailey Ray (who mum likes) and Joss Stone (who we both like a bit). They also contained some stuff dad was interested in too.
I listened to an Ellie Goulding interview on Radio 2 on iPlayer, read this very good article about her in the Independent and listened to some of her music on Youtube. In the Independent article and in the Radio 2 interview she mentions Erik Hassle, who was another support artist for Little Boots when we saw her. None of us were keen on him or his music, so me and Claire think we might be missing something with Ellie Goulding singing his praises and Radio 1 playing his music! You can hear his next single here - what do you think? And this is a single that Ellie Goulding and Erik Hassle covered together.
On Youtube I also watched JLS' new music video for One Shot and a found a clip of Shingai from the Noisettes performing on Jools' Annual Hootenanny. I saw it on TV, but if you missed it you can watch it here. The Noisettes should be good live next month :) And I found this tiny teaser clip of Diana Vickers' (who came 3rd on X Factor 2008) debut single Once, which will be released in April.
I've been listening to Alexandra Burke's Overcome album more, which I still love. And I've listened to Rihanna's latest album Rated R and Cheryl Cole's album 3 Words on Spotify. Rated R isn't unpleasant, but isn't something I'd listen to again, despite liking Russian Roulette. But I thought that 3 Words was horrible and was a huge disappointment! I like Fight For This Love, but dont like the single 3 Words, so was hoping the album would be more in the style of Fight For This Love - but it isn't. Most of the songs are similar in style to 3 Words and Will.i.am features on a lot of them. Some are just about bearable, but some I hated, especially Boy Like You which samples a fantastic Fleetwood Mac song (Little Lies) then ruins it with Cheryl attempting to rap! There was one song on the album apart from Fight For This Love which I didn't mind and it's called Parachute. I might listen to those 2 tracks again but not the rest of the album. I'm glad Parachute will be her next single.
And Siiren is a Fairtrade website that Catherine's mum told me about when they came the other week, but I've only had chance to look at recently. Catherine's mum recommended it because we were commenting on her pretty necklace that she'd bought from there. They sell some lovely Fairtrade jewellery and other bits and pieces for good prices and delivery is free :) I think I might use them for presents in future.
Sunday, 10 January 2010
A busy week
On Tuesday afternoon me and mum went out to visit my nan. She wasn't in as good spirits as she usually is because she'd not been sleeping well. But when we saw her she'd just got a supply of her usual painkillers and we provided her with earplugs and an eyemask so thought they'd help her sleep better. Dad visited her on Wed and said she was much more like her usual self after a better night's sleep. My nan's wrist is a lot better (she broke it in a fall in November) and she's able to have her wrist splint off for periods now. And she's generally feeling a lot better than when she was admitted 5 weeks ago, which I think is due to the rest she's been getting. The doctors are still trying to get her to put on weight though, so she's allowed to order snacks and high calorie foods with her usual meals. But she's quite a picky eater, so hasn't gained any weight yet. She's 5ft 6" and weighs just 46kg. I ate her slice of cake for her while we were there because she didn't want it. I'm not sure if the scans and tests haven't shown anything or whether they have but my nan just hasn't been told. She's not seen her consultant for about 3 weeks, she keeps seeing junior doctors instead and they don't have a clue! We've all suggested that she asks to see her consultant, but my nan wont because she doesn't want to cause any bother. However she is going to be discharged tomorrow or Tue :D The only thing stopping her getting home was the fact that her bed was too high for her now that her mobility has decreased, but Dad bought and set up a new one for her yesterday.
And on the way home from visiting nan I called in at the village surgery to pick up some tablets for dad and to give mine and mum's prescriptions in. I'll return tomorrow to pick up the tablets and tape for my NG tube that I ordered.
On Tue night I got to sleep at about midnight again :) That was good though as I needed to be at the stupidly early time of 7.30am on Wed morning! However I've been very nocturnal again since then :P Need to try to get to bed at a sensible time tonight though because I need to get up earlier than usual for a physio appt tomorrow.
On Wed morning at 9am I had my first Pathways to Work interview. Most people who receive the ESA benefit have to attend at least 5 of these interviews and the aim of them is to help you get back into work after being ill. I was quite nervous about it as I didn't know what to expect and was worried that I'd be pressured into going back to work before I was well enough. However, it went very well. I saw a lovely advisor and together we filled in lots of forms and I was asked lots of questions about my health, how it would affect me working, what sort of work I'd like to do etc. The advisor I saw agreed that I'm not well enough to work at the moment. However I've got an appt with someone else for 3 weeks time to help me put together a CV and I'll be seeing the same lady again in about a month when we're going to have a think about whether I could try some volunteering. So I'm glad I'm not going to be pressured into anything. And after my appt I had a wander round town and then we went to Starbucks. They charged us £2.20 for a glass of milk for me, what a rip-off!
And it started snowing while I was out on Wed - at last! It snowed solidly from about 9am til about 1pm. And the snow settled too. We've not had any more since then though and I don't think we're forecast any more. The snow doesn't seem to have hit us nearly as badly as it has the rest of the UK. The snow froze, but our roads seemed ok. And the snow is melting now.
On Wed late morning/early afternoon mum had to brave the blizzards to go and rescue Alf from college before he got stranded there. She managed to get him ok, but somehow skidded off the road on the way home and destroyed a fence! Luckily they weren't hurt and the car only has a tiny little scratch on the paintwork! Haha :P
When I got back home on Wed I collected some high calorie drinks from our next door neighbour because they'd been delivered while we were out. The parcel contained some Fortisip drinks - which I already know upset my tummy, some yoghurt style Fortisip drinks - which I still need to try but suspect may also upset my tummy, some Fortijuice drinks - I tried the apple flavoured one yesterday and it made me feel nauseus all day and some strawberry flavoured Fortisip puddings - I've tried 2 of them and they're not pleasant but I can manage them. I'm going to try the Fortisip yoghurt flavours and then get back to my dietician with my thoughts on them all.
I was exhausted after my busy morning on Wed, but still managed to have a quite a productive afternoon and evening. That afternoon I was phoned by a liver nurse from Hosp B. He said he couldn't answer all my questions because my consultant, Dr G, was out of the country. Dr G was supposed to be back, but couldn't get a flight due to the snow. Another consultant I know, Dr B, had been involved in the Wed meeting instead, but she'd been phoned at home because she was snowed in! But some of my questions could be answered. My Tac level was 8.2, so they want to keep my Tac level the same for now. It'll be reviewed after my next blood test at the end of the month. I've still not heard back from the company that deliver my Tac but will have to chase them up tomorrow because I really am running short of Tac (I think I've got 6 days worth left). My next clinic will probably be in March. That's got me wondering what has happened to my clincs with Dr W at Hosp A because when I saw him in July he said he wanted to see me again in 3 months. It's now been 6 months and I've not heard anything, I wonder if they've forgotten me?!
Apparently I will receive the results from my Dec tests in a letter, but I don't know when I'll actually get that. So for now I don't know what my kidney results were. Apparently my scopes and biopsies showed no rejection, which is great :D However they did show some inflammation. The nurse I spoke to didn't have all my notes with him, but thought that that might be an indication of a low level infection that could be causing my tummy cramps. Then I pointed out to him that I'd been getting the pains for 18 months, so he wasn't sure. Hopefully my consultant will soon shed some more light on that though. I'm so glad they've found something that could explain my tummy pains at last. Hopefully now they'll take me more seriously.
The nurse I spoke to had no idea at all about the heart ECG and echo and he looked back at my last admission letter and my last 2 clinic letters but couldn't see any indication of why Dr G had booked them for me. He was very surprised that they'd just been booked without me knowing anything about it. So the nurse emailed Dr G who quickly replied to me. He thought that there had been a mix up. Apparently all post transplant patients have regular echoes, but I'm 3 years post transplant now and hadn't heard about that before! And that can wait til my next clinic, so the separate appt has been cancelled.
On Wed evening I attemped some knitting! Mum taught me with some huge needles and some chunky wool and I knitted a few rows. Me and mum were both surprised at how quickly I got the hang of it despite feeling exhausted. I didn't do much though because I wanted to leave it at a good point. And I've not picked it up again yet.
During my nocturnalism that night I sorted through all the Christmas cards from this year and picked out a few to keep which had notes written inside or were hand made cards. And then I looked through a big carrier bag of my old artwork from when I was about 3 til 12. Some of it was very cute :) And I used to write backwards before I started school, hehe :P
On Thur morning one of the DVDs I'd ordered for my mum for her birthday arrived in the post. And the other DVD has been dispatched. We also received a very sweet thank you note from Sophie's little sister E thanking us for her Christmas presents. That morning I also tidied my bedroom (decluttered, dusted, hoovered...) in preparation for Catherine coming that afternoon. That wasn't a clever idea, I was then shattered before she'd even arrived!
Catherine and her mum came round for a couple of hours on Thur afternoon. It was great to see Catherine because she's been away at uni. We exchanged Christmas presents (Catherine gave me some Pocky and some fluffy bedsocks), chatted, played on our DSes and also played on my Wii which was good fun :D And that evening I prepared for my ESA medical assessment by getting recent medical letters together, reading through the advice I'd received on AYME and some info I found on the Internet...
On Fri morning we headed into the city. As we were in the car we passed by a gritter and so got grit thrown over the windscreen. Of course the water squirters were frozen and using the windscreen wipers just smeared the windscreen even more. So that made mum's driving more difficult. We parked at the Park and Ride carpark and got a bus into the city centre. We were a bit early so wandered around the shops and I picked up a bargain - Coraline on DVD for just £8 (the cheapest current price on the Internet is £13!).
Then we walked to the venue for my ESA medical assessment. The doctor I saw really seemed to know his stuff - he had a good understanding of ME and even understood when I told him I'd had an interssucception of my small intestine! I had to ask him to repeat some things because he had a strong foreign accent, but he understood me, listened well and made lots of notes. I had been told that it could take up to 2 hours, but it only took 30mins. He didn't ask too many questions, but because I answered them in lots of detail we managed to cover a lot. He also asked a lot about my transplant as well as my ME. And he noticed things like that I need to be reminded to eat and drink because I don't feel hunger or thirst. He didn't ask me to do any tasks, it was just talking and answering questions.
The doctor I saw will send his notes to the people who make the decision and then they'll write to me. So I wont know the outcome for some time, anywhere between 2 and 6 weeks I think. The possible outcomes are to be turned down for ESA or to be put into one of 2 groups to receive ESA - the support group which gets a little bit more money and doesn't have to do anything else or the employment group who get slightly less money and have to attend 5 Pathways to Work interviews. So basically most people who receive ESA get put into the employment group with those who are more ill/disabled being put into the support group. The doctor I saw said he shouldn't really be telling me this, but he's going to recommend that I'm put into the support group. The final decision isn't down to him though and I'm not really bothered which group I'm put into, I just want to be granted ESA. So fingers crossed. I'm trying to put it out of my mind for now though.
After my ESA medical assessment me and mum went to a cafe where I had a glass of milk, a croissant and a bit of mum's piece of flapjack. I always wear an organ donation wristband. I was given lots post transplant by someone I saw at the time, but haven't been able to get hold of any more, they were just manufactured as a one off. I gave lots to friends to wear to raise awareness and me and dad have got through a few each because they wear out after a while or get lost. I lost one when I was in Japan, I think it must have flown off one time when I took my gloves off. And somehow I managed to lose my final wristband that way was while we were out on Fri :( Luckily Claire had one that she didn't wear much, so she's given me that back. I felt lost without it.
On Fri evening I was surfing the Internet and discovered that Ellie Goulding (a great singer/songwriter who I saw supporting Little Boots on tour) had been named as BBC's Sound of 2010 :D You can read more about her and the award here and here. And she was on Radio 2 here if you'd like to hear some of her music. And while I was on the Internet I also cancelled my subscription to Focus magazine. It's a great magazine, but I'm really struggling to read it at the moment. And mum's friend Mary (who lives just across the road) popped in to tell us about how her trip to New York had been. It sounded amazing, I'd love to go to New York!
On Saturday and today I've been exhausted after such a busy week and a stressful day on Fri. So I've not managed to do much. On Sat I briefly played on my Wii and chatted to Chris when he popped round. And I also remembered that I'd got 60 free Napster music downloads when I bought my new laptop, so used some of them to download Alexandra Burke's Overcome album (which I've listened to lots on Spotify and really like) and a song called Under The Sheets by Ellie Goulding which I really like and heard her perform live when we saw her :)
This morning I felt shattered so tried to go back to bed for a couple of hours. I'd just nodded off though when I was woken by the sound of the downstairs TV coming up through the floor so I decided to give up on that plan. Claire came round this afternoon which was nice, but we only chatted because I didn't have the energy to play on the Wii or anything like that.
There was outrage in the ME community earlier this week when the Daily Mail posted a poll on its website asking whether people thought ME was a genuine illness or not. You can view it here. It's annoyed me a bit because they wouldn't dare run a poll like that for any other illnesses, but somehow it's ok to do that for ME. Grrr. Some people I know have really been upset by it though :(
I posted an update today about the latest news on Jess. If you haven't already done so, please read it here.
M spent 6 hours in theatre on Thur. She remained stable throughout the operation and afterwards. The surgeons discovered that all of her transplanted bowel is very damaged. They couldn't remove it all because of the blood vessel connections to her transplanted liver (which is completely fine), so just removed the worst bits in the hope that that will reduce the bleeding. If not she'll have to return to theatre this week to have some more removed. The hope now is that she'll stabilise enough to be listed for a second transplant. Fingers crossed.
I've been in contact with C, who is mine and Imogen's mutual friend. Her mum had been receiving text updates from Imy's mum, so she let me know as much as she knew. And C gave me Imy's mum's mobile number so I've been in contact with her myself today. Imy received her trasplant on Dec 31st, so that's 11 days ago. She's back on a ward and has been eating a little. She could eat a bit pre-transplant, but it was very restricted. Imy is still very uncomfortable which is completely understandable and is having a bit of difficulty learning to take her tablets orally because she's always had them down a tube before. But her hospital seem to have a very different approach to Hosp B. After my transplant my TPN (intravenous feeding) was gradually reduced and replaced by NG (enteral) feeding. And then as I've gradually learnt to eat and have built my eating up, my NG feeds have been reduced. However Imy is allowed to eat pretty much whatever she wants and is currently still on TPN. But next week they're planning to stop her TPN completely and see how she goes with just eating. She wont have any enteral feeds. That sounds very daunting to me, but hopefully Imy will manage ok. Her mum thinks that she might be in touch with me herself soon and then hopefully I'll be able to visit her in hospital when she's feeling a bit better :)
This week I've listened to quite a bit of music. When mum played with Spotify we listened to Michael Buble (who mum likes more than me) and Pixie Lott (who we both love). I've also listened to Mika on my iPod on the buses on Fri. And I've listened to The Saturday's new album Wordshaker (which I received for Christmas from one of my Secret Santas) - I currently really like Ego which is going to be their next single. I've just discovered that Spotify have now made Cheryl Cole's album 3 Words and Rihanna's latest album Rated R available to the people who use Spotify for free, whereas it was originally just available to paying members. I've been waiting for both of those albums so have listened to a bit of Cheryl Cole's album but am looking forward to listening to more of it and I'm also looking forward to seeing what I think of Rihannna's album.
This week with my parents I've watched the final 2 episodes plus the outtakes of the first series of Gavin and Stacey and the first 2 episodes of the second series (which we've borrowed from the library). We're still all really enjoying watching it together :) And on my own I've watched 2 episodes of The Vicar of Dibley from my boxset and 3 episodes of the first series of Dragons' Den which I rented from Tesco DVD rental.
And the only film I've watched this week is St Trinians (which I had rented), with my parents. I thought it was quite good. Me and mum are hoping to go to the cinema with Claire on Wed evening to see St Trinians 2 :)
And on TV I've watched the following:
~ Great British Railway Journeys - I started watching this series with mum because she loves trains and railways. I said in my last blog post that the first episode was disappointing because most of the content wasn't actually railway related. We watched Tue's episode and then gave up on it.
~ Hannah: The Girl Who Said No To A New Heart - this was on TV on Tue evening, but I watched it on Wed. It's definitely worth a watch, as it's very thought provoking.
~ Nurse Jackie - this is a black comedy series from the USA. It was on the BBC every night last week and the remaining episodes will be on weekly from tomorrow (Mon). I wasn't sure about it at first, but now me and mum really like it. I'd recommend it.
~ Wife Swap USA - rubbish TV I know, but it amused me ;)
~ 3 Men Go To Ireland - I watched the second episode of this off our HDR and it was very funny.
~ Tracy Beaker Returns - I loved watching the original series of Tracy Beaker when I was younger and a new series has just begun after many years. So I'm watching it :D
~ QI - very funny as always.
~ Sugababes new music video for Wear My Kiss - I used to like the Sugababes, but have gone off them recently. I had to watch the first TV showing of their new video though. I wasn't impressed.
~ and I've also watched the music channels a bit this week too.
And on the way home from visiting nan I called in at the village surgery to pick up some tablets for dad and to give mine and mum's prescriptions in. I'll return tomorrow to pick up the tablets and tape for my NG tube that I ordered.
On Tue night I got to sleep at about midnight again :) That was good though as I needed to be at the stupidly early time of 7.30am on Wed morning! However I've been very nocturnal again since then :P Need to try to get to bed at a sensible time tonight though because I need to get up earlier than usual for a physio appt tomorrow.
On Wed morning at 9am I had my first Pathways to Work interview. Most people who receive the ESA benefit have to attend at least 5 of these interviews and the aim of them is to help you get back into work after being ill. I was quite nervous about it as I didn't know what to expect and was worried that I'd be pressured into going back to work before I was well enough. However, it went very well. I saw a lovely advisor and together we filled in lots of forms and I was asked lots of questions about my health, how it would affect me working, what sort of work I'd like to do etc. The advisor I saw agreed that I'm not well enough to work at the moment. However I've got an appt with someone else for 3 weeks time to help me put together a CV and I'll be seeing the same lady again in about a month when we're going to have a think about whether I could try some volunteering. So I'm glad I'm not going to be pressured into anything. And after my appt I had a wander round town and then we went to Starbucks. They charged us £2.20 for a glass of milk for me, what a rip-off!
And it started snowing while I was out on Wed - at last! It snowed solidly from about 9am til about 1pm. And the snow settled too. We've not had any more since then though and I don't think we're forecast any more. The snow doesn't seem to have hit us nearly as badly as it has the rest of the UK. The snow froze, but our roads seemed ok. And the snow is melting now.
On Wed late morning/early afternoon mum had to brave the blizzards to go and rescue Alf from college before he got stranded there. She managed to get him ok, but somehow skidded off the road on the way home and destroyed a fence! Luckily they weren't hurt and the car only has a tiny little scratch on the paintwork! Haha :P
When I got back home on Wed I collected some high calorie drinks from our next door neighbour because they'd been delivered while we were out. The parcel contained some Fortisip drinks - which I already know upset my tummy, some yoghurt style Fortisip drinks - which I still need to try but suspect may also upset my tummy, some Fortijuice drinks - I tried the apple flavoured one yesterday and it made me feel nauseus all day and some strawberry flavoured Fortisip puddings - I've tried 2 of them and they're not pleasant but I can manage them. I'm going to try the Fortisip yoghurt flavours and then get back to my dietician with my thoughts on them all.
I was exhausted after my busy morning on Wed, but still managed to have a quite a productive afternoon and evening. That afternoon I was phoned by a liver nurse from Hosp B. He said he couldn't answer all my questions because my consultant, Dr G, was out of the country. Dr G was supposed to be back, but couldn't get a flight due to the snow. Another consultant I know, Dr B, had been involved in the Wed meeting instead, but she'd been phoned at home because she was snowed in! But some of my questions could be answered. My Tac level was 8.2, so they want to keep my Tac level the same for now. It'll be reviewed after my next blood test at the end of the month. I've still not heard back from the company that deliver my Tac but will have to chase them up tomorrow because I really am running short of Tac (I think I've got 6 days worth left). My next clinic will probably be in March. That's got me wondering what has happened to my clincs with Dr W at Hosp A because when I saw him in July he said he wanted to see me again in 3 months. It's now been 6 months and I've not heard anything, I wonder if they've forgotten me?!
Apparently I will receive the results from my Dec tests in a letter, but I don't know when I'll actually get that. So for now I don't know what my kidney results were. Apparently my scopes and biopsies showed no rejection, which is great :D However they did show some inflammation. The nurse I spoke to didn't have all my notes with him, but thought that that might be an indication of a low level infection that could be causing my tummy cramps. Then I pointed out to him that I'd been getting the pains for 18 months, so he wasn't sure. Hopefully my consultant will soon shed some more light on that though. I'm so glad they've found something that could explain my tummy pains at last. Hopefully now they'll take me more seriously.
The nurse I spoke to had no idea at all about the heart ECG and echo and he looked back at my last admission letter and my last 2 clinic letters but couldn't see any indication of why Dr G had booked them for me. He was very surprised that they'd just been booked without me knowing anything about it. So the nurse emailed Dr G who quickly replied to me. He thought that there had been a mix up. Apparently all post transplant patients have regular echoes, but I'm 3 years post transplant now and hadn't heard about that before! And that can wait til my next clinic, so the separate appt has been cancelled.
On Wed evening I attemped some knitting! Mum taught me with some huge needles and some chunky wool and I knitted a few rows. Me and mum were both surprised at how quickly I got the hang of it despite feeling exhausted. I didn't do much though because I wanted to leave it at a good point. And I've not picked it up again yet.
During my nocturnalism that night I sorted through all the Christmas cards from this year and picked out a few to keep which had notes written inside or were hand made cards. And then I looked through a big carrier bag of my old artwork from when I was about 3 til 12. Some of it was very cute :) And I used to write backwards before I started school, hehe :P
On Thur morning one of the DVDs I'd ordered for my mum for her birthday arrived in the post. And the other DVD has been dispatched. We also received a very sweet thank you note from Sophie's little sister E thanking us for her Christmas presents. That morning I also tidied my bedroom (decluttered, dusted, hoovered...) in preparation for Catherine coming that afternoon. That wasn't a clever idea, I was then shattered before she'd even arrived!
Catherine and her mum came round for a couple of hours on Thur afternoon. It was great to see Catherine because she's been away at uni. We exchanged Christmas presents (Catherine gave me some Pocky and some fluffy bedsocks), chatted, played on our DSes and also played on my Wii which was good fun :D And that evening I prepared for my ESA medical assessment by getting recent medical letters together, reading through the advice I'd received on AYME and some info I found on the Internet...
On Fri morning we headed into the city. As we were in the car we passed by a gritter and so got grit thrown over the windscreen. Of course the water squirters were frozen and using the windscreen wipers just smeared the windscreen even more. So that made mum's driving more difficult. We parked at the Park and Ride carpark and got a bus into the city centre. We were a bit early so wandered around the shops and I picked up a bargain - Coraline on DVD for just £8 (the cheapest current price on the Internet is £13!).
Then we walked to the venue for my ESA medical assessment. The doctor I saw really seemed to know his stuff - he had a good understanding of ME and even understood when I told him I'd had an interssucception of my small intestine! I had to ask him to repeat some things because he had a strong foreign accent, but he understood me, listened well and made lots of notes. I had been told that it could take up to 2 hours, but it only took 30mins. He didn't ask too many questions, but because I answered them in lots of detail we managed to cover a lot. He also asked a lot about my transplant as well as my ME. And he noticed things like that I need to be reminded to eat and drink because I don't feel hunger or thirst. He didn't ask me to do any tasks, it was just talking and answering questions.
The doctor I saw will send his notes to the people who make the decision and then they'll write to me. So I wont know the outcome for some time, anywhere between 2 and 6 weeks I think. The possible outcomes are to be turned down for ESA or to be put into one of 2 groups to receive ESA - the support group which gets a little bit more money and doesn't have to do anything else or the employment group who get slightly less money and have to attend 5 Pathways to Work interviews. So basically most people who receive ESA get put into the employment group with those who are more ill/disabled being put into the support group. The doctor I saw said he shouldn't really be telling me this, but he's going to recommend that I'm put into the support group. The final decision isn't down to him though and I'm not really bothered which group I'm put into, I just want to be granted ESA. So fingers crossed. I'm trying to put it out of my mind for now though.
After my ESA medical assessment me and mum went to a cafe where I had a glass of milk, a croissant and a bit of mum's piece of flapjack. I always wear an organ donation wristband. I was given lots post transplant by someone I saw at the time, but haven't been able to get hold of any more, they were just manufactured as a one off. I gave lots to friends to wear to raise awareness and me and dad have got through a few each because they wear out after a while or get lost. I lost one when I was in Japan, I think it must have flown off one time when I took my gloves off. And somehow I managed to lose my final wristband that way was while we were out on Fri :( Luckily Claire had one that she didn't wear much, so she's given me that back. I felt lost without it.
On Fri evening I was surfing the Internet and discovered that Ellie Goulding (a great singer/songwriter who I saw supporting Little Boots on tour) had been named as BBC's Sound of 2010 :D You can read more about her and the award here and here. And she was on Radio 2 here if you'd like to hear some of her music. And while I was on the Internet I also cancelled my subscription to Focus magazine. It's a great magazine, but I'm really struggling to read it at the moment. And mum's friend Mary (who lives just across the road) popped in to tell us about how her trip to New York had been. It sounded amazing, I'd love to go to New York!
On Saturday and today I've been exhausted after such a busy week and a stressful day on Fri. So I've not managed to do much. On Sat I briefly played on my Wii and chatted to Chris when he popped round. And I also remembered that I'd got 60 free Napster music downloads when I bought my new laptop, so used some of them to download Alexandra Burke's Overcome album (which I've listened to lots on Spotify and really like) and a song called Under The Sheets by Ellie Goulding which I really like and heard her perform live when we saw her :)
This morning I felt shattered so tried to go back to bed for a couple of hours. I'd just nodded off though when I was woken by the sound of the downstairs TV coming up through the floor so I decided to give up on that plan. Claire came round this afternoon which was nice, but we only chatted because I didn't have the energy to play on the Wii or anything like that.
There was outrage in the ME community earlier this week when the Daily Mail posted a poll on its website asking whether people thought ME was a genuine illness or not. You can view it here. It's annoyed me a bit because they wouldn't dare run a poll like that for any other illnesses, but somehow it's ok to do that for ME. Grrr. Some people I know have really been upset by it though :(
I posted an update today about the latest news on Jess. If you haven't already done so, please read it here.
M spent 6 hours in theatre on Thur. She remained stable throughout the operation and afterwards. The surgeons discovered that all of her transplanted bowel is very damaged. They couldn't remove it all because of the blood vessel connections to her transplanted liver (which is completely fine), so just removed the worst bits in the hope that that will reduce the bleeding. If not she'll have to return to theatre this week to have some more removed. The hope now is that she'll stabilise enough to be listed for a second transplant. Fingers crossed.
I've been in contact with C, who is mine and Imogen's mutual friend. Her mum had been receiving text updates from Imy's mum, so she let me know as much as she knew. And C gave me Imy's mum's mobile number so I've been in contact with her myself today. Imy received her trasplant on Dec 31st, so that's 11 days ago. She's back on a ward and has been eating a little. She could eat a bit pre-transplant, but it was very restricted. Imy is still very uncomfortable which is completely understandable and is having a bit of difficulty learning to take her tablets orally because she's always had them down a tube before. But her hospital seem to have a very different approach to Hosp B. After my transplant my TPN (intravenous feeding) was gradually reduced and replaced by NG (enteral) feeding. And then as I've gradually learnt to eat and have built my eating up, my NG feeds have been reduced. However Imy is allowed to eat pretty much whatever she wants and is currently still on TPN. But next week they're planning to stop her TPN completely and see how she goes with just eating. She wont have any enteral feeds. That sounds very daunting to me, but hopefully Imy will manage ok. Her mum thinks that she might be in touch with me herself soon and then hopefully I'll be able to visit her in hospital when she's feeling a bit better :)
This week I've listened to quite a bit of music. When mum played with Spotify we listened to Michael Buble (who mum likes more than me) and Pixie Lott (who we both love). I've also listened to Mika on my iPod on the buses on Fri. And I've listened to The Saturday's new album Wordshaker (which I received for Christmas from one of my Secret Santas) - I currently really like Ego which is going to be their next single. I've just discovered that Spotify have now made Cheryl Cole's album 3 Words and Rihanna's latest album Rated R available to the people who use Spotify for free, whereas it was originally just available to paying members. I've been waiting for both of those albums so have listened to a bit of Cheryl Cole's album but am looking forward to listening to more of it and I'm also looking forward to seeing what I think of Rihannna's album.
This week with my parents I've watched the final 2 episodes plus the outtakes of the first series of Gavin and Stacey and the first 2 episodes of the second series (which we've borrowed from the library). We're still all really enjoying watching it together :) And on my own I've watched 2 episodes of The Vicar of Dibley from my boxset and 3 episodes of the first series of Dragons' Den which I rented from Tesco DVD rental.
And the only film I've watched this week is St Trinians (which I had rented), with my parents. I thought it was quite good. Me and mum are hoping to go to the cinema with Claire on Wed evening to see St Trinians 2 :)
And on TV I've watched the following:
~ Great British Railway Journeys - I started watching this series with mum because she loves trains and railways. I said in my last blog post that the first episode was disappointing because most of the content wasn't actually railway related. We watched Tue's episode and then gave up on it.
~ Hannah: The Girl Who Said No To A New Heart - this was on TV on Tue evening, but I watched it on Wed. It's definitely worth a watch, as it's very thought provoking.
~ Nurse Jackie - this is a black comedy series from the USA. It was on the BBC every night last week and the remaining episodes will be on weekly from tomorrow (Mon). I wasn't sure about it at first, but now me and mum really like it. I'd recommend it.
~ Wife Swap USA - rubbish TV I know, but it amused me ;)
~ 3 Men Go To Ireland - I watched the second episode of this off our HDR and it was very funny.
~ Tracy Beaker Returns - I loved watching the original series of Tracy Beaker when I was younger and a new series has just begun after many years. So I'm watching it :D
~ QI - very funny as always.
~ Sugababes new music video for Wear My Kiss - I used to like the Sugababes, but have gone off them recently. I had to watch the first TV showing of their new video though. I wasn't impressed.
~ and I've also watched the music channels a bit this week too.
Wednesday, 30 December 2009
2009 Meme
Thanks Posh Totty for this meme :)
1. What did you do in 2009 that you'd never done before? ... Managed for 6 months without artificial feeds. And I went away with school for 10 days without any artificial feeds and without my parents :D
2. Did you keep your new years' resolutions, and will you make more for next year? .... I don't think I made any this year. I'm not sure I'll make any resolutions for next year, but I do have hopes that you can see on this blog post.
3. How will you be spending New Year's Eve? ... I will be spending the afternoon at the orthodontist :( I was invited to a sixth form meet-up that night, but am not well enough to go so will probably spend the night at home watching TV.
4. Did anyone close to you die? ... No
5. What countries did you visit? ... Japan :D
6. What would you like to have in 2010 that you lacked in 2009? ... More energy
7. What date from 2009 will remain etched upon your memory, and why? ... That's a hard question, I really don't know about a specific date, but my memories of Japan will stay with me.
8. What was your biggest achievement of the year? ... Completing my International Baccalaureate Certificates :)
9. What was your biggest failure? ... At the time dropping maths at school seemed like a failure, but looking back on it dropping a subject was the only way I could keep going at school while I was ill. And I'm really disappointed that I wasn't photographed for the Gifts of Life photography exhibition, but that was out of my control.
10. Did you suffer illness or injury? ... Yup, ME. But that was ongoing from 2008.
11. What was the best thing you bought? ... A sofa and bigger TV (with an inbuilt DVD player) for my bedroom. And my new laptop :D
12. Where did most of your money go? ... DVDs
13. What song will always remind you of 2009? ... I'm not sure about specific songs, but I've enjoyed discovering some fantastic albums this year including 'Funhouse' by Pink, 'It's Not Me It's You' by Lily Allen 'Hands' by Little Boots, 'Taylor Swift' and 'Fearless' by Taylor Swift, 'The Boy Who Knew Too Much' by Mika, 'Turn It Up' by Pixie Lott and 'Overcome' by Alexandra Burke.
14. What do you wish you'd done more of? ... I know I should have rested more to stop my ME getting worse, but I can't just do nothing.
15. What do you wish you'd done less of? .... I know I shouldn't have overdone it so much, which lead to my ME getting worse. But what would I have missed out on then?
16. What was your favourite TV program? ... I rediscovered Absolutely Fabulous on DVD. And Ashes to Ashes series 2 was great.
17. Do you hate anyone now that you didn't hate this time last year? ... Don't think so.
18. What was the best book you read? ... I've not been able to read novels this year because of my poor concentration and memory :(
19. What was your greatest musical discovery? ... Taylor Swift, Little Boots and Pixie Lott.
20. What was your favourite film of this year? ... At the cinema - The Proposal, My Sister's Keeper. The Hangover and Up 3D I think. And of course, how could I forget Coraline! :D I've watched loads of DVDs too, but can't remember specifics. Recently I've really enjoyed watching Memoirs of a Geisha and Girl Interrupted though.
21. What did you do on your birthday? ... Claire came round so I spent the day with her and my family watching DVDs, playing games and Dad cooked tea on a BBQ. I also took Claire to meet my nan for the first time.
22. What kept you sane? ... My family and friends
23. Who did you miss? ... I often miss my best friend Lizzy because she lives 80 miles away so I'm not able to see her as often as I'd like to.
24. Who was the best new person you met? ... I can't just name one, but I've met some amazing people though the online ME communities I've joined.
25. Tell us a valuable life lesson you learned in 2009: ... ME is frustrating, but it's not the end of the world. It won't kill me and I will get better, I just don't know when, so need to try to be more patient til then.
1. What did you do in 2009 that you'd never done before? ... Managed for 6 months without artificial feeds. And I went away with school for 10 days without any artificial feeds and without my parents :D
2. Did you keep your new years' resolutions, and will you make more for next year? .... I don't think I made any this year. I'm not sure I'll make any resolutions for next year, but I do have hopes that you can see on this blog post.
3. How will you be spending New Year's Eve? ... I will be spending the afternoon at the orthodontist :( I was invited to a sixth form meet-up that night, but am not well enough to go so will probably spend the night at home watching TV.
4. Did anyone close to you die? ... No
5. What countries did you visit? ... Japan :D
6. What would you like to have in 2010 that you lacked in 2009? ... More energy
7. What date from 2009 will remain etched upon your memory, and why? ... That's a hard question, I really don't know about a specific date, but my memories of Japan will stay with me.
8. What was your biggest achievement of the year? ... Completing my International Baccalaureate Certificates :)
9. What was your biggest failure? ... At the time dropping maths at school seemed like a failure, but looking back on it dropping a subject was the only way I could keep going at school while I was ill. And I'm really disappointed that I wasn't photographed for the Gifts of Life photography exhibition, but that was out of my control.
10. Did you suffer illness or injury? ... Yup, ME. But that was ongoing from 2008.
11. What was the best thing you bought? ... A sofa and bigger TV (with an inbuilt DVD player) for my bedroom. And my new laptop :D
12. Where did most of your money go? ... DVDs
13. What song will always remind you of 2009? ... I'm not sure about specific songs, but I've enjoyed discovering some fantastic albums this year including 'Funhouse' by Pink, 'It's Not Me It's You' by Lily Allen 'Hands' by Little Boots, 'Taylor Swift' and 'Fearless' by Taylor Swift, 'The Boy Who Knew Too Much' by Mika, 'Turn It Up' by Pixie Lott and 'Overcome' by Alexandra Burke.
14. What do you wish you'd done more of? ... I know I should have rested more to stop my ME getting worse, but I can't just do nothing.
15. What do you wish you'd done less of? .... I know I shouldn't have overdone it so much, which lead to my ME getting worse. But what would I have missed out on then?
16. What was your favourite TV program? ... I rediscovered Absolutely Fabulous on DVD. And Ashes to Ashes series 2 was great.
17. Do you hate anyone now that you didn't hate this time last year? ... Don't think so.
18. What was the best book you read? ... I've not been able to read novels this year because of my poor concentration and memory :(
19. What was your greatest musical discovery? ... Taylor Swift, Little Boots and Pixie Lott.
20. What was your favourite film of this year? ... At the cinema - The Proposal, My Sister's Keeper. The Hangover and Up 3D I think. And of course, how could I forget Coraline! :D I've watched loads of DVDs too, but can't remember specifics. Recently I've really enjoyed watching Memoirs of a Geisha and Girl Interrupted though.
21. What did you do on your birthday? ... Claire came round so I spent the day with her and my family watching DVDs, playing games and Dad cooked tea on a BBQ. I also took Claire to meet my nan for the first time.
22. What kept you sane? ... My family and friends
23. Who did you miss? ... I often miss my best friend Lizzy because she lives 80 miles away so I'm not able to see her as often as I'd like to.
24. Who was the best new person you met? ... I can't just name one, but I've met some amazing people though the online ME communities I've joined.
25. Tell us a valuable life lesson you learned in 2009: ... ME is frustrating, but it's not the end of the world. It won't kill me and I will get better, I just don't know when, so need to try to be more patient til then.
Saturday, 21 November 2009
Children In Need, shopping and Nan
I've left it a little bit longer than I intended to leave it between updates, but it's not too long since I last updated, so hopefully this post won't be ridiculously long. We'll see :P
I'm attempting to read a book at the moment which is something I've not done for a while because of the trouble I have concentrating. I was chatting to a friend about one of my favourite films, Coraline, and she reminded me that it was based on a book. So I requested the book from the library to read. I'm not getting on brilliantly with it though - it's only a short children's book, but so far I've read less than half of it and that was in 2 sittings, so when I put it down and then picked it up again I found I'd forgotten what had happened so far, lol. I do wish I could read novels like I used to. I've also managed to read some of my latest Focus magazine, which is quite tricky reading.
My new Wii game (New Super Mario Bros Wii) arrived in the post on Thur. It's a great game, but I'm finding it very hard and so very frustrating at the moment. I've read reviews of it and they say it doesn't get difficult til later in the game, so I know it's me not the game, and that's annoying. I will keep persevering though when I've got enough patience. I've only played the single player mode so far, so am looking forward to trying out the multiplayer mode :) Both modes have the same levels though, so I know that wont be any easier.
Again I've not watched any full length DVDs since my update, but need to get watching them again because I've got 4 Christmassy ones rented at the moment (I normally only get 2 at a time, but have some bonus ones at the mo to make up for the ones I missed with the postal strikes). I did watch an episode of Absolutely Fabulous though :)
On TV since my last update I've watched some more musical things. I can't remember what it was called, but I recorded a programme on Channel 4 a few nights ago where Little Boots returned to her home town of Blackpool. That was a mixture of her talking and performing, so I enjoyed watching that. I also watched Little Boots being interviewed and performing on Loose Women. I watched the interview and performance Taylor Swift did on the Paul O'Grady show again because I had to show it to mum and I also saw her interviewed on This Morning. And I caught Pixie Lott performing on the Hollyoaks music show today.
Tonight of course I watched the X Factor. I thought Joe was brilliant and really hope he wins. I quite like Stacey too, but I don't care for the other 4 acts so got a bit bored during tonight's programme because I was only interested in 2 of 6 performances, hehe. I've just worked out that the winner will most probably be revealed on the 13th Dec, when I'm in hospital for my annual tests. But I'm staying in the hotel this time and I'm quite sure that the hotel room will have a TV, fingers crossed. I also watched the Xtra Factor tonight and was very pleased to hear that Little Boots (who was on their celebrity panel) also thinks that Joe is the best. Can't believe that she likes the twins though! I really hope that the twins go out tomorrow.
On Thur me and my parents really enjoyed watching Children In Need Rocks The Royal Albert Hall. I didn't like all of the performances (wasn't impressed at all by Leona Lewis), but loved Mika, Annie Lennox and Lily Allen :D I was impressed at how well Cheryl Cole did seeing as she wasn't miming! And the British Transplant Games got a mention :) Last night I enjoyed watching Children In Need. I think Peter Kay is a genius! I think I most enjoyed some of the music performances :)
I went to bed quite sensibly on Thur (I was in bed for midnight and asleep by 1am), but then stayed up til 2.15am last night to watch all of Children In Need! That probably wasn't sensible, particularly as I'd just about sorted my nocturnalism out, but never mind! :P I'm not going to try to get my bedtime earlier again yet because I know I'll have a late night on Mon. So I'm just going to go with it tonight and tomorrow night and then try to fix my nocturnalism again from Tue or Wed.
I'm really excited about Monday as I'm going to see Taylor Swift in concert at Wembley, yay! :D Me and mum are planning to go to London a bit earlier and visit a shopping arcade that my mum has discovered is the oldest in London or something like that and we might go to Harrods too (just to browse) if I feel up to it :) My copy of Taylor Swift's new CD - Fearless Platinum Edition - arrived in the post this morning. And it's brilliant - it includes 5 new tracks, 1 new version of a track and a DVD with music videos, behind the scenes of music videos, a documentary about behind the scenes of her tour and more! :D
I was planning to see my friend F tomorrow for a DVD day, but I've cancelled that so hopefully I'll be more likely to feel ok for Mon, fingers crossed. I've felt quite tired over the last few days, but that's because I've been overdoing it yet again! :P I was still tired on Thur from a busy day on Tue, but felt better yesterday so went out. Me and mum didn't go to the city we usually go to, but went to another equally local city to do some shopping :D I had a nice, but tiring, day and my feet hurt at the end of it! I bought a birthday card for dad because it's his birthday on Dec 3rd, 4 CDs at bargain prices in a charity shop, a fantastic pair of blue earrings that look like zipper pulls and this small portable iPod speaker that looks like a lego brick :D I guess after shopping yesterday and then having a late night last night it's no surprise that I've felt very tired today :P
I did manage to go with my parents to visit my Nan today though :) As I said in a previous update, she had a fall almost a week ago and bumped her head and broke her wrist. She's got carers visiting her at home 4 times a day at the moment, so doesn't have to stay in hospital which is great. She's got poor mobility (she broke her leg badly a few years ago and it didn't mend properly because she's got osteoporosis), so relies on a walking frame to get around her home. But she's struggling to use her walking frame with a broken wrist, so she's finding moving around very difficult at the moment. Hopefully as her wrist heals though she'll be able to use her walking frame more easily again. Lots of her relatives live locally so they've all been visiting her to help her out and keep her spirits up. We cheered her up today and mum got some shopping in for her. We'd not seen her since her (86th!) birthday on the 9th, so took over all her presents today too.
This evening I came to put my NG tube in and discovered that I'd run out of my preferred tape (the one that sometimes falls off). I'd ordered some from the surgery a week or so ago, but forgot to collect it, whoops. I'm shifting my days off feed around a little this week so I can have Mon night off, so needed to come up with an alternative tape plan for tonight and tomorrow night. I found a small amount of my preferred tape cut up into pieces for spares and kept by my bed, but not enough for 2 nights. So I've used the original quite sticky tape (Mefix) tonight, but know it wont want to come off easily in the morn and will probably leave my cheek red tomorrow. But at least I've got some of my preferred tape left for Sun night so my cheek wont be red for going out on Mon. And I'll pick up some new tape from the surgery in time for Tue night.
I received an email from my dietician on Fri. I only need to have a high calorie drink on the days after I've had a night off feed. But she didn't answer my question about when to reduce my feeds to just 3 nights a week. I managed a high calorie drink diluted and drunk more slowly on Thur and today and they didn't upset my tummy at all. So if my weight is ok on Tue I'll then reduce my feed to just 3 nights a week :) I don't think I'll be off feeds by Christmas, but I'll need to ask my dietician what she thinks. That was the original plan though, but if that's not going to happen I'm happy to stay on them for a little bit longer - maybe til sometime in Jan. I don't want to reduce them too quickly because if I do that I might lose some weight and if so I could end up having to be on the feeds for longer.
Yesterday my bedside lamp broke :( I really liked it because it was a touch lamp (so easy to turn on in the night for finding my way to the toilet) and had 3 brightnesses so didn't wake me up too much if I needed to put it on in the night. And it was lilac so matched the walls in my room. Dad will try to fix it, so I've got my fingers crossed that it's a mendable fault. But if he can't fix it then I'll be hunting for a new one.
This evening I was writing a long email on Facebook and somehow I must have clicked something which made my whole email just disappear. I was so frustrated. So I had to rewrite it all, grrrr.
I've just realised I don't have a Blogger profile photo, so will have to see if I can remember to sort that out :)
I'm attempting to read a book at the moment which is something I've not done for a while because of the trouble I have concentrating. I was chatting to a friend about one of my favourite films, Coraline, and she reminded me that it was based on a book. So I requested the book from the library to read. I'm not getting on brilliantly with it though - it's only a short children's book, but so far I've read less than half of it and that was in 2 sittings, so when I put it down and then picked it up again I found I'd forgotten what had happened so far, lol. I do wish I could read novels like I used to. I've also managed to read some of my latest Focus magazine, which is quite tricky reading.
My new Wii game (New Super Mario Bros Wii) arrived in the post on Thur. It's a great game, but I'm finding it very hard and so very frustrating at the moment. I've read reviews of it and they say it doesn't get difficult til later in the game, so I know it's me not the game, and that's annoying. I will keep persevering though when I've got enough patience. I've only played the single player mode so far, so am looking forward to trying out the multiplayer mode :) Both modes have the same levels though, so I know that wont be any easier.
Again I've not watched any full length DVDs since my update, but need to get watching them again because I've got 4 Christmassy ones rented at the moment (I normally only get 2 at a time, but have some bonus ones at the mo to make up for the ones I missed with the postal strikes). I did watch an episode of Absolutely Fabulous though :)
On TV since my last update I've watched some more musical things. I can't remember what it was called, but I recorded a programme on Channel 4 a few nights ago where Little Boots returned to her home town of Blackpool. That was a mixture of her talking and performing, so I enjoyed watching that. I also watched Little Boots being interviewed and performing on Loose Women. I watched the interview and performance Taylor Swift did on the Paul O'Grady show again because I had to show it to mum and I also saw her interviewed on This Morning. And I caught Pixie Lott performing on the Hollyoaks music show today.
Tonight of course I watched the X Factor. I thought Joe was brilliant and really hope he wins. I quite like Stacey too, but I don't care for the other 4 acts so got a bit bored during tonight's programme because I was only interested in 2 of 6 performances, hehe. I've just worked out that the winner will most probably be revealed on the 13th Dec, when I'm in hospital for my annual tests. But I'm staying in the hotel this time and I'm quite sure that the hotel room will have a TV, fingers crossed. I also watched the Xtra Factor tonight and was very pleased to hear that Little Boots (who was on their celebrity panel) also thinks that Joe is the best. Can't believe that she likes the twins though! I really hope that the twins go out tomorrow.
On Thur me and my parents really enjoyed watching Children In Need Rocks The Royal Albert Hall. I didn't like all of the performances (wasn't impressed at all by Leona Lewis), but loved Mika, Annie Lennox and Lily Allen :D I was impressed at how well Cheryl Cole did seeing as she wasn't miming! And the British Transplant Games got a mention :) Last night I enjoyed watching Children In Need. I think Peter Kay is a genius! I think I most enjoyed some of the music performances :)
I went to bed quite sensibly on Thur (I was in bed for midnight and asleep by 1am), but then stayed up til 2.15am last night to watch all of Children In Need! That probably wasn't sensible, particularly as I'd just about sorted my nocturnalism out, but never mind! :P I'm not going to try to get my bedtime earlier again yet because I know I'll have a late night on Mon. So I'm just going to go with it tonight and tomorrow night and then try to fix my nocturnalism again from Tue or Wed.
I'm really excited about Monday as I'm going to see Taylor Swift in concert at Wembley, yay! :D Me and mum are planning to go to London a bit earlier and visit a shopping arcade that my mum has discovered is the oldest in London or something like that and we might go to Harrods too (just to browse) if I feel up to it :) My copy of Taylor Swift's new CD - Fearless Platinum Edition - arrived in the post this morning. And it's brilliant - it includes 5 new tracks, 1 new version of a track and a DVD with music videos, behind the scenes of music videos, a documentary about behind the scenes of her tour and more! :D
I was planning to see my friend F tomorrow for a DVD day, but I've cancelled that so hopefully I'll be more likely to feel ok for Mon, fingers crossed. I've felt quite tired over the last few days, but that's because I've been overdoing it yet again! :P I was still tired on Thur from a busy day on Tue, but felt better yesterday so went out. Me and mum didn't go to the city we usually go to, but went to another equally local city to do some shopping :D I had a nice, but tiring, day and my feet hurt at the end of it! I bought a birthday card for dad because it's his birthday on Dec 3rd, 4 CDs at bargain prices in a charity shop, a fantastic pair of blue earrings that look like zipper pulls and this small portable iPod speaker that looks like a lego brick :D I guess after shopping yesterday and then having a late night last night it's no surprise that I've felt very tired today :P
I did manage to go with my parents to visit my Nan today though :) As I said in a previous update, she had a fall almost a week ago and bumped her head and broke her wrist. She's got carers visiting her at home 4 times a day at the moment, so doesn't have to stay in hospital which is great. She's got poor mobility (she broke her leg badly a few years ago and it didn't mend properly because she's got osteoporosis), so relies on a walking frame to get around her home. But she's struggling to use her walking frame with a broken wrist, so she's finding moving around very difficult at the moment. Hopefully as her wrist heals though she'll be able to use her walking frame more easily again. Lots of her relatives live locally so they've all been visiting her to help her out and keep her spirits up. We cheered her up today and mum got some shopping in for her. We'd not seen her since her (86th!) birthday on the 9th, so took over all her presents today too.
This evening I came to put my NG tube in and discovered that I'd run out of my preferred tape (the one that sometimes falls off). I'd ordered some from the surgery a week or so ago, but forgot to collect it, whoops. I'm shifting my days off feed around a little this week so I can have Mon night off, so needed to come up with an alternative tape plan for tonight and tomorrow night. I found a small amount of my preferred tape cut up into pieces for spares and kept by my bed, but not enough for 2 nights. So I've used the original quite sticky tape (Mefix) tonight, but know it wont want to come off easily in the morn and will probably leave my cheek red tomorrow. But at least I've got some of my preferred tape left for Sun night so my cheek wont be red for going out on Mon. And I'll pick up some new tape from the surgery in time for Tue night.
I received an email from my dietician on Fri. I only need to have a high calorie drink on the days after I've had a night off feed. But she didn't answer my question about when to reduce my feeds to just 3 nights a week. I managed a high calorie drink diluted and drunk more slowly on Thur and today and they didn't upset my tummy at all. So if my weight is ok on Tue I'll then reduce my feed to just 3 nights a week :) I don't think I'll be off feeds by Christmas, but I'll need to ask my dietician what she thinks. That was the original plan though, but if that's not going to happen I'm happy to stay on them for a little bit longer - maybe til sometime in Jan. I don't want to reduce them too quickly because if I do that I might lose some weight and if so I could end up having to be on the feeds for longer.
Yesterday my bedside lamp broke :( I really liked it because it was a touch lamp (so easy to turn on in the night for finding my way to the toilet) and had 3 brightnesses so didn't wake me up too much if I needed to put it on in the night. And it was lilac so matched the walls in my room. Dad will try to fix it, so I've got my fingers crossed that it's a mendable fault. But if he can't fix it then I'll be hunting for a new one.
This evening I was writing a long email on Facebook and somehow I must have clicked something which made my whole email just disappear. I was so frustrated. So I had to rewrite it all, grrrr.
I've just realised I don't have a Blogger profile photo, so will have to see if I can remember to sort that out :)
Wednesday, 18 November 2009
Weight, a busy day and then paying for it the next day!
My weight was up a little bit to 50.9kg yesterday :D I emailed my dietician yesterday morning with my weight and my concerns about the high calorie drinks and she replied last night. Apparently lots of post transplant patients also have trouble with the high calorie drinks, so it's good to know I'm not alone. It's odd that I used to manage them fine though! My dietician suggested trying them diluted half and half with normal cow's milk and drinking them more slowly, over 30 to 45mins. So I'll give that a try. I'm not sure whether she wants me to have one a day or just on the mornings after I'm off feed though, so I emailed her back to check that, but haven't had a response yet. She said that if I can manage the drinks then I can reduce my feeds to just 3 nights a week, but I don't know whether she means to reduce them now or trial the drinks first. So I also asked that in my response email. I'll let you know when I hear.
After my swine flu jab on Mon eve, my arm was really sore that night and yesterday when I moved my arm at all. Luckily Paracetamol eased it a bit. And it's just been a bit achy today, but I've not needed any Paracetamol for it. I'm not really looking forward to my second one, but at least I'll known that the sore arm wont last long. Mum and Dad's arms haven't been nearly as sore as mine!
Because of my sore arm and overheating under new thick duvet I didn't sleep well on Mon night. But last night I got to sleep before midnight (which is early for me) and slept really well :)
I felt fine yesterday, but had quite a busy day which is probably why I've felt so exhausted today. Yesterday afternoon I attended an appointment at the job centre in town as I'd recieved a letter saying I needed to go to continue receiving my benefit. And the appointment wasn't too bad. What happens next depends on how my ESA medical assessment goes at the beginning of Dec and which of the 2 groups (employment or support) they decide I should go in. If I'm put into the support group then I'll just get my benefit, but if they think I'm well enough to go into the employment group then I'll have to attend 5 Pathways To Work appointments to see what kind of work I would be able to manage. My first Pathways To Work appointment is due in a month but I might not have heard the decision on my ESA medical assessment by then, so I might have to start the Pathways To Work appointments in case I'm put into the employment group. So yesterday's appointment at the job centre was just filling in a referral form to the Pathways To Work in case I'm put into the employment group after my ESA medical assessment. With the advisor I just had to go through how my ME and transplant affect me in everyday life and how they would affect me if I was at work. And what kind of work I might be interested in. I don't think I'm well enough to work at the moment (unless it was very part time and could be done at home via my laptop) but if I'm put in the employment group then I'll have to see what they say. I'll keep you updated.
After that yesterday I went round town (but only bought a Radio Times) and then on the way home called in at the local garden centre with mum (where I bought a couple of small Christmas gifts for friends). Then yesterday evening me and mum went to the cinema to see Disney's A Christmas Carol in 3D which was very good :D
Today I was supposed to be going into the city to meet a friend, H, but had to cancel because I just felt exhausted and had no energy when I woke up this morning :( We'll definitely rearrange though and H is going to see if her and her mum could come to our house, as that'd be easier for me if I was having a not so good day. H's mum is good friends with my mum, so hopefully that'll work. Today I just relaxed at home and am feeling a bit better this evening.
I received some good post yesterday - as well as a rental DVD and some info on what to expect from my upcoming ESA medical assessment, I also got a lovely letter from Lizzy's husband's niece, Mawite, who lives in Burma :D She's 17 and has very good English. I sent her a letter a couple of months go, so it was lovely to receive a response. I'll reply to her soon.
I also received another nice piece of post yesterday. A couple of months ago I received an email from Emily about Jess and her urgent need for a transplant. So I forwarded Emily's email (plus a few words of my own) onto all my email contacts. I got a few responses from people I emailed it to including one from a lovely lady I used to know when I went to church (I used to go with Lizzy because her and her family went, I don't think I've ever actually believed in God and am now definitely an Atheist). She knew about my transplant and asked if she could use part of my email in the church's monthly newsletter to promote organ donation. I said of course. So in the post she sent me a copy of the newsletter with the article in and a little note. I'm hoping that will have encouraged some more people to join the organ donor register :) I sent her a reply via email today to say thanks.
I'm quite private about my transplant and usually wait til I know people well before telling them. But I'm now making an effort to be more open if it might encourage more organ donors. So yesterday I revealed that I'd had a transplant on the AYME forums because there was a discussion about organ donation going on. I got some lovely responses :) I'm not feeling ready to go to the media with my story yet, but might do in the future. Tomorrow will be my 3 year transplant anniversary, but I'll probably blog more about that tomorrow.
I think I said in a previous blog post that at the weekend I sent my first letter to my new AYME buddy, a girl called Katie who is severerly affected by ME. I want to buy her a little something for Christmas, but because I've never been severely affected by ME I'm not sure what would be appropriate and the last thing I want to do is give her something she's not going to be able to use. So today I wrote a letter to her mum asking for her advice because she'll know Katie best. I'll post that off tomorrow and hopefully her mum will get back to me with some guidance.
Over the last couple of days my concentration hasn't been very good, so I'm getting through my Official Nintendo Magazine (which came on Mon I think) more slowly than usual. I received my other monthly magazine, Focus, today, but haven't even attempted reading that yet as it's a more difficult read. And I've flicked through the Which magazine that mum brought back from the library on Tue too.
The DVD of the second series of Absolutely Fabulous which I'd requested came into the library on Tue, so I enjoyed watching an episode of that today :)
I've watched a lot on TV again, but not many whole problems, more just the interesting bits of long or boring programmes! :P I can't remember which day it was, but earlier this week a friend in the transplant community said on Facebook that her daughter (who has had a heart transplant) would be on Jeremy Kyle that day. I can't stand Jeremy Kyle and think his programme is awful, but recorded this specific programme about inspirational children and then just watched the feature with the girl I know in :) I recorded and then skimmed through Film 2009 for the interesting bits and also recorded and skimmed through Graham Norton because I wasn't interested in 2 of his guests (and don't like him), but wanted to see Dawn French because I think she's great :D I've got sucked into I'm A Celeb despite saying I wasn't going too, so I've been watching that each night :P
And there have been loads of good music things on TV too over the last couple of days. I've seen Mika performing his new single 'Rain' on GMTV and being interviewed on BBC Breakfast, Pixie Lott performing her new single 'Cry Me Out' and being interviewed on This Morning, Little Boots performing her new single 'Earthquake' on GMTV and Taylor Swift performing her new single '15' and being interviewed on the Paul O'Grady show! :D All these great singles are being released this week or next week, but I think it's sad that none of them will stand a chance in the charts because 'You Are Not Alone' by the X Factor Finalists is without a doubt going to shoot to the top of the singles chart and stay there for weeks. I know it's a charity single which is great and I'll be buying it myself and I do watch the X Factor, but I just think it's bad that the X Factor is now so powerful that no other artists stand a chance.
Taylor Swift was promoting her new single and rerelease of her latest album (called Fearless Platinum Edition) on the Paul O'Grady Show today. Last time I looked for Fearless Platinum Edition on the Internet it was only released in America and sourcing a copy from there would cost too much money, but today when I looked I discovered that it has now been released here in the UK. I have the original Fearless album, but the Platinum Edition has 6 new tracks plus a bonus DVD featuring music videos and behind the scenes tour footage, so I just had to buy it! I'd been doing so well with resisting buying things, but couldn't resist this :P Because it's such a new release it cost me £12.99 though, plus postage to ensure that I receive it before the concert as I'd love a chance to listen to it before then incase she performs any new songs :D Yay, can't believe it's just 5 days til I see Taylor Swift at Wembley. I can't wait :D Roll on Monday!!!
A new Wii game (called New Super Mario Bros Wii), which I preordered a few months ago was dispatched to me today so I'll get it for release day (Fri). I've got my fingers crossed that it'll arrive tomorrow though ;) The downside of a fantastic new Wii game though is that it has cost me £35! Eeek!
After my swine flu jab on Mon eve, my arm was really sore that night and yesterday when I moved my arm at all. Luckily Paracetamol eased it a bit. And it's just been a bit achy today, but I've not needed any Paracetamol for it. I'm not really looking forward to my second one, but at least I'll known that the sore arm wont last long. Mum and Dad's arms haven't been nearly as sore as mine!
Because of my sore arm and overheating under new thick duvet I didn't sleep well on Mon night. But last night I got to sleep before midnight (which is early for me) and slept really well :)
I felt fine yesterday, but had quite a busy day which is probably why I've felt so exhausted today. Yesterday afternoon I attended an appointment at the job centre in town as I'd recieved a letter saying I needed to go to continue receiving my benefit. And the appointment wasn't too bad. What happens next depends on how my ESA medical assessment goes at the beginning of Dec and which of the 2 groups (employment or support) they decide I should go in. If I'm put into the support group then I'll just get my benefit, but if they think I'm well enough to go into the employment group then I'll have to attend 5 Pathways To Work appointments to see what kind of work I would be able to manage. My first Pathways To Work appointment is due in a month but I might not have heard the decision on my ESA medical assessment by then, so I might have to start the Pathways To Work appointments in case I'm put into the employment group. So yesterday's appointment at the job centre was just filling in a referral form to the Pathways To Work in case I'm put into the employment group after my ESA medical assessment. With the advisor I just had to go through how my ME and transplant affect me in everyday life and how they would affect me if I was at work. And what kind of work I might be interested in. I don't think I'm well enough to work at the moment (unless it was very part time and could be done at home via my laptop) but if I'm put in the employment group then I'll have to see what they say. I'll keep you updated.
After that yesterday I went round town (but only bought a Radio Times) and then on the way home called in at the local garden centre with mum (where I bought a couple of small Christmas gifts for friends). Then yesterday evening me and mum went to the cinema to see Disney's A Christmas Carol in 3D which was very good :D
Today I was supposed to be going into the city to meet a friend, H, but had to cancel because I just felt exhausted and had no energy when I woke up this morning :( We'll definitely rearrange though and H is going to see if her and her mum could come to our house, as that'd be easier for me if I was having a not so good day. H's mum is good friends with my mum, so hopefully that'll work. Today I just relaxed at home and am feeling a bit better this evening.
I received some good post yesterday - as well as a rental DVD and some info on what to expect from my upcoming ESA medical assessment, I also got a lovely letter from Lizzy's husband's niece, Mawite, who lives in Burma :D She's 17 and has very good English. I sent her a letter a couple of months go, so it was lovely to receive a response. I'll reply to her soon.
I also received another nice piece of post yesterday. A couple of months ago I received an email from Emily about Jess and her urgent need for a transplant. So I forwarded Emily's email (plus a few words of my own) onto all my email contacts. I got a few responses from people I emailed it to including one from a lovely lady I used to know when I went to church (I used to go with Lizzy because her and her family went, I don't think I've ever actually believed in God and am now definitely an Atheist). She knew about my transplant and asked if she could use part of my email in the church's monthly newsletter to promote organ donation. I said of course. So in the post she sent me a copy of the newsletter with the article in and a little note. I'm hoping that will have encouraged some more people to join the organ donor register :) I sent her a reply via email today to say thanks.
I'm quite private about my transplant and usually wait til I know people well before telling them. But I'm now making an effort to be more open if it might encourage more organ donors. So yesterday I revealed that I'd had a transplant on the AYME forums because there was a discussion about organ donation going on. I got some lovely responses :) I'm not feeling ready to go to the media with my story yet, but might do in the future. Tomorrow will be my 3 year transplant anniversary, but I'll probably blog more about that tomorrow.
I think I said in a previous blog post that at the weekend I sent my first letter to my new AYME buddy, a girl called Katie who is severerly affected by ME. I want to buy her a little something for Christmas, but because I've never been severely affected by ME I'm not sure what would be appropriate and the last thing I want to do is give her something she's not going to be able to use. So today I wrote a letter to her mum asking for her advice because she'll know Katie best. I'll post that off tomorrow and hopefully her mum will get back to me with some guidance.
Over the last couple of days my concentration hasn't been very good, so I'm getting through my Official Nintendo Magazine (which came on Mon I think) more slowly than usual. I received my other monthly magazine, Focus, today, but haven't even attempted reading that yet as it's a more difficult read. And I've flicked through the Which magazine that mum brought back from the library on Tue too.
The DVD of the second series of Absolutely Fabulous which I'd requested came into the library on Tue, so I enjoyed watching an episode of that today :)
I've watched a lot on TV again, but not many whole problems, more just the interesting bits of long or boring programmes! :P I can't remember which day it was, but earlier this week a friend in the transplant community said on Facebook that her daughter (who has had a heart transplant) would be on Jeremy Kyle that day. I can't stand Jeremy Kyle and think his programme is awful, but recorded this specific programme about inspirational children and then just watched the feature with the girl I know in :) I recorded and then skimmed through Film 2009 for the interesting bits and also recorded and skimmed through Graham Norton because I wasn't interested in 2 of his guests (and don't like him), but wanted to see Dawn French because I think she's great :D I've got sucked into I'm A Celeb despite saying I wasn't going too, so I've been watching that each night :P
And there have been loads of good music things on TV too over the last couple of days. I've seen Mika performing his new single 'Rain' on GMTV and being interviewed on BBC Breakfast, Pixie Lott performing her new single 'Cry Me Out' and being interviewed on This Morning, Little Boots performing her new single 'Earthquake' on GMTV and Taylor Swift performing her new single '15' and being interviewed on the Paul O'Grady show! :D All these great singles are being released this week or next week, but I think it's sad that none of them will stand a chance in the charts because 'You Are Not Alone' by the X Factor Finalists is without a doubt going to shoot to the top of the singles chart and stay there for weeks. I know it's a charity single which is great and I'll be buying it myself and I do watch the X Factor, but I just think it's bad that the X Factor is now so powerful that no other artists stand a chance.
Taylor Swift was promoting her new single and rerelease of her latest album (called Fearless Platinum Edition) on the Paul O'Grady Show today. Last time I looked for Fearless Platinum Edition on the Internet it was only released in America and sourcing a copy from there would cost too much money, but today when I looked I discovered that it has now been released here in the UK. I have the original Fearless album, but the Platinum Edition has 6 new tracks plus a bonus DVD featuring music videos and behind the scenes tour footage, so I just had to buy it! I'd been doing so well with resisting buying things, but couldn't resist this :P Because it's such a new release it cost me £12.99 though, plus postage to ensure that I receive it before the concert as I'd love a chance to listen to it before then incase she performs any new songs :D Yay, can't believe it's just 5 days til I see Taylor Swift at Wembley. I can't wait :D Roll on Monday!!!
A new Wii game (called New Super Mario Bros Wii), which I preordered a few months ago was dispatched to me today so I'll get it for release day (Fri). I've got my fingers crossed that it'll arrive tomorrow though ;) The downside of a fantastic new Wii game though is that it has cost me £35! Eeek!
Saturday, 31 October 2009
Little Boots concert :D
The concert was fantastic :D I've been looking for photos on the Internet from our concert (as I couldn't belive the amount of people taking photos and videos on their phones and cameras) but couldn't find any. However I did find some from an earlier date in the same tour which you can see here. As you read through this blog post you'll find references to photos you can find in that link :)
We got to the venue 15mins before the doors opened and although there was already a queue it wasn't very long when we joined it. The venue was very small and intimate, but had fantastic acoustics. We managed to stand quite near the front. We weren't in rows as such, but there were only 2 or 3 people in front of me, so I was very close! And I could see :D I did have to stick my elbow in a big man next to me a few times as he kept pushing me out the way and then when that failed I just slipped in front of him :P I'd never stood before at a concert before, so was quite nervous about that. I hadn't realised that my claustrophobia would be a problem and I did feel quite claustrophobic at times, but I coped. And the venue was much hotter than I expected as it took ages for the air con to start, so I'd gone all wrapped up in loads of layers (poloneck with a t-shirt on top and then a hooded jacket on top of that), but went to the toilet to strip down to just a t-shirt! As for being on my feet for so long, I managed but it was hard. As I wasn't used to it, all my muscles (feet, legs, back, shoulders and neck) started hurting about half an hour into my standing. And I had to stand for 4 hours in total, owww! I did manage to stay on my feet though, but wouldn't do it again as I didn't realise it'd be that painful! :P
The reason I had to stand for so long is because there were 2 support acts on first and the stage had to be re-set up between each act, so I'd been standing for 3 hours by the time Little Boot came on stage! The first support act was Erik Hassel who was from Sweden. I didn't really like his music though. The second support act was Ellie Goulding who was really good. I think she's going to be huge. It was a shame that the instruments drowned her vocals out a bit though. You can see her in pictures 1 to 7.
Then eventually Little Boots came on! You can see her in pictures 8 to 15. And it was worth the wait because her performance was amazing :D For those of you who are familiar with her album 'Hands', she played all the tracks from that apart from 'No Brakes' and also performed a brand new track that wasn't even finished yet called 'Echoes'. Her voice was great live and as well as singing she also played lots of musical instruments - I counted at least 6! See pictures 10 and 15 for one of her stranger instruments called a tenori-on! I sang along to most of the songs. And Little Boots involved the audience with clapping in songs and seeing if we could sing key parts louder than Liverpool had :D
Little Boots wore some fantastic outfits too. Her tour is called the Skull of Dreams tour, so she had a big black skull with flashing eyes on stage with her! She started off wearing a shiny silver hooded cape and then took that off after the first song to reveal an amazing black and silver outfit (see picture 9). Later on she wore an white jacket over the top of it made of small-ish 3D pyramids. And towards the end she wore a white dressing gown before taking it off to reveal gold wings on her sleeves! And she had really long false eyelashes (which you can see in the photos) that I later discovered through one of her blogs on the Internet take her at least 4 attempts to put on each time, lol.
I bought a great Little Boots black tour t-shirt, which has her name as a simple logo on the front in sky blue and white and then her tour dates listed on the back :D
Me, mum and Claire all had a fantastic night :D :D :D
We got to the venue 15mins before the doors opened and although there was already a queue it wasn't very long when we joined it. The venue was very small and intimate, but had fantastic acoustics. We managed to stand quite near the front. We weren't in rows as such, but there were only 2 or 3 people in front of me, so I was very close! And I could see :D I did have to stick my elbow in a big man next to me a few times as he kept pushing me out the way and then when that failed I just slipped in front of him :P I'd never stood before at a concert before, so was quite nervous about that. I hadn't realised that my claustrophobia would be a problem and I did feel quite claustrophobic at times, but I coped. And the venue was much hotter than I expected as it took ages for the air con to start, so I'd gone all wrapped up in loads of layers (poloneck with a t-shirt on top and then a hooded jacket on top of that), but went to the toilet to strip down to just a t-shirt! As for being on my feet for so long, I managed but it was hard. As I wasn't used to it, all my muscles (feet, legs, back, shoulders and neck) started hurting about half an hour into my standing. And I had to stand for 4 hours in total, owww! I did manage to stay on my feet though, but wouldn't do it again as I didn't realise it'd be that painful! :P
The reason I had to stand for so long is because there were 2 support acts on first and the stage had to be re-set up between each act, so I'd been standing for 3 hours by the time Little Boot came on stage! The first support act was Erik Hassel who was from Sweden. I didn't really like his music though. The second support act was Ellie Goulding who was really good. I think she's going to be huge. It was a shame that the instruments drowned her vocals out a bit though. You can see her in pictures 1 to 7.
Then eventually Little Boots came on! You can see her in pictures 8 to 15. And it was worth the wait because her performance was amazing :D For those of you who are familiar with her album 'Hands', she played all the tracks from that apart from 'No Brakes' and also performed a brand new track that wasn't even finished yet called 'Echoes'. Her voice was great live and as well as singing she also played lots of musical instruments - I counted at least 6! See pictures 10 and 15 for one of her stranger instruments called a tenori-on! I sang along to most of the songs. And Little Boots involved the audience with clapping in songs and seeing if we could sing key parts louder than Liverpool had :D
Little Boots wore some fantastic outfits too. Her tour is called the Skull of Dreams tour, so she had a big black skull with flashing eyes on stage with her! She started off wearing a shiny silver hooded cape and then took that off after the first song to reveal an amazing black and silver outfit (see picture 9). Later on she wore an white jacket over the top of it made of small-ish 3D pyramids. And towards the end she wore a white dressing gown before taking it off to reveal gold wings on her sleeves! And she had really long false eyelashes (which you can see in the photos) that I later discovered through one of her blogs on the Internet take her at least 4 attempts to put on each time, lol.
I bought a great Little Boots black tour t-shirt, which has her name as a simple logo on the front in sky blue and white and then her tour dates listed on the back :D
Me, mum and Claire all had a fantastic night :D :D :D
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