Yesterday I received an appt to see my gynaecologist through the post for a Tue in Dec. Unfortunately it's a date my mum is going to give a knitting talk at another library so to attend that appt I'd either have to get a lift there and back from dad when he went to work, so spend all day at the hosp/in the city, or come home on the buses which isn't simple. Due to having no idea how I'll feel on that day I decided to try to rearrange it to a time when mum will be able to take me. I was worried I'd have to wait a lot longer because my gynaecologist is often very busy, but I've got an appt for less than a fortnight later on a date my mum isn't working. It is the day before Christmas Eve though.
At my last clinic appt I mentioned to my consultant that I had an uncomfortable bulge in the side of my abdomen when I lay down. It's not a hernia but it is a weakening of the muscles in my abdomen as a result of all my operations. I can't do anything about it though. Luckily it's not causing me any problems at the moment but sometimes it's quite uncomfortable.
I was struggling with dizzy spells when I wrote my last update. They got a lot better but I've had a few spells of them since then. I thought things had settled down til yesterday when they returned again.
Since I've put on the last couple of kilograms of weight I've developed stretch marks on my legs. When I mentioned this to my consultant he said that I'm more prone to them because I'm on steroids.
I've been having lots of coldsores recently. I wondered if they were being triggered by the sun but they don't seem to be because they come up even when I've not been out in the sun. I hate them, grrr.
I've had my ears pierced since I was about 10 and have always been very lucky in that I've been able to wear any earrings. But recently I seem to have developed an allergy to cheap earrings. It's nothing major in the grand scheme of things but it is frustrating because I have lots of earrings that aren't gold or silver.
I found that my skin was very itchy last month ago and I couldn't work out why. It turned out that mum had changed the soap and I must have reacted to it. So swapping back to our normal soap solved the problem :)
In May I received the dreaded DLA renewal forms in the post, eek! They were last filled out quite soon after my transplant so quite a lot had changed since then - I'd recovered from the transplant but had developed ME. Dad used to fill my DLA forms in for me, but this time I did it myself, with some assistance from dad. I did it online in June and didn't find it too stressful. I heard the result in July - my care rate had dropped from higher rate to lower rate. I think that was a fair outcome, but that now means I'm adjusting to quite a drop in income. And I was very relieved I didn't have to have a medical assessment.
We were able to have our loft properly insulated last month for free because I receive DLA, so that should enable us to save some money on our heating.
I've recently set myself up a second bank account which will be better for saving money as it's got a higher interest rate than my original account.
I also renewed my CEA card earlier in the year.
I think I'd stopped volunteering at Barnardo's last time I updated, but I can't remember. Anyway I quit that because none of the other volunteers spoke to me so I found it very lonely work. I intended to find another volunteering job (like my Pathways to Work advisor encouraged me to) but haven't done that yet. Although I do do some voluntary work for AYME - I write (although not as regularly as I should) to a girl who is severely affected by ME, I provide feedback on each issue of AYME's bi-monthly magazine and I am the local contact for my county (so I put young people within my county in touch with each other and hope to organise a local meet-up soon). I did apply for a postion as a moderator on the AYME forums in the summer, but I didn't get the job. I suspect it may have been because I've not been on the forums very long - it's just over a year now but it was less than a year when I applied for this position a few months ago. My Pathway to Work advisor was made redundant so I won't be seeing her any more.
As I just mentioned, I've been a member of AYME for just over a year now. They are a fantastic charity which provides lots of support for young people aged under 26 who suffer from ME. I've found their forums invaluable as through them I've met lots of people who understand what I'm going through and I've made some great friends :)
My focus and concentration (which are affected by my ME) haven't changed significantly but I did manage to read some short stories and even a whole novel in the summer :D I'm still struggling to read though and I've not read any novels since that one as it just takes too much effort to make it enjoyable. Although having said that, a novel by an author I like came into the library recently so I think I'll give that a try. I can still manage to watch films and TV when I'm not too exhausted, but I think I'll talk about that more in another update.
I've recently made a new friend with ME. I've got lots of online friends, but Rebecca lives in the same village as me. She met mum through using the library a lot and then mum introduced her to me. We've only met up a couple of times so far but we got on really well (despite her being quite a bit older than me) and I'm looking forward to seeing her more :)
In July it was my 2 year ME anniversary. And back in May it was my 3 and a half year transplant anniversary, next month it'll be 4 years. I've not been in touch with my donor's sisters for a while so I need to get back in touch with them soon.
I recently heard from the chair of a fantastic charity called PINNT which supports people on enteral and IV feeding. I used to be quite involved with this support group when I was younger but obviously since my transplant I've become a bit more distant from them because I'm no longer on TPN. I did go to the meet-up in my county earlier in the year though. I know C, the chair, very well, so it was lovely to get an email from her. She asked about how I was and then asked if I'd like to give a presentation about being on TPN and then the decision to have a transplant and the PINNT weekend next year. So of course I said yes :) Mum or dad will talk too and maybe my consultant from Hosp A. I've got a further email since then with a few more details. C has asked me to talk for about 20mins which is a very long time, but hopefully if I can include a question and answer session then that should be fine. C thinks it'll be a very thought provoking session and I'm hoping that as well as getting people thinking (and hopefully signing up to the organ donor register), it will also reassure people who may need a small bowel transplant in the future.
On May 19th I gave a talk about organ donation to a group of teenagers. I was very nervous beforehand because although I'd spoken to hundreds of adults before I'd never given a talk to teenagers. However it went really well and I got them all talking about organ donation and a couple even filled out the forms there and then. One girl misunderstood what I was asking of her and thought that I wanted her to donate her organs while she was still alive. Despite that she still filled out the form.
Please don't forget to spread the word about organ donation by sharing the video I posted here to help to prevent unnecessary deaths like Kennedy's.
Showing posts with label reading. Show all posts
Showing posts with label reading. Show all posts
Monday, 11 October 2010
Thursday, 6 May 2010
Getting up to date with April - part 7 (more day to day stuff)
I decided on Tue 20th that I would let myself buy some more DVD boxsets if my total spending (not including rent, Tesco DVD rental and magazine subscription - my regular monthly payments) in April didn't exceed an amount that I set then based on what I'd spent so far during April. I thought that I'd let myself buy some DVD boxsets to take my spending that month up to the amount I set, but I ended up spending only £5 less than that amount which wasn't enough for a DVD boxset that I wanted. However I had had some unexpected outgoings towards the end of April including Alf choosing to cash his birthday IOU for an iPod charger so I decided to allow myself to spend a bit more than £5 on a DVD. I struggled to choose between Gavin and Stacey series 2 and 3 or Outnumbered series 2 and very nearly bought them all at once. But on Sun 2nd I decided on Outnumbered and ordered it that night. I'll get the Gavin and Stacey DVDs at another point, maybe at the end of this month/start of next month if I don't spend too much this month (I might aim to spend less than last month).
Mon 3rd May was Bank Holiday Mon so there were some local carboot sales on that me and my parents decided to have a look at. First we went to a one off carboot sale in a pub carpark in a neighbouring village. There I bought a DVD called In America DVD for 50p, 7 DVDs that had been free with newspapers for a total of £1 and 15 CD cases for £1. It was very chilly while we were looking round and there were some light showers too so I left my parents still looking round and went back to sit in the car round the corner to warm up. While I was sitting in the car another shower started up which got quite heavy and then it started hailing. I was very smug sitting all warm and dry in the car. Dad sensibly found some shelter in the pub car park til the hail eased but mum decided to run back to the car in it. She got soaked!
We then went back home and dropped dad off because he'd decided the weather wasn't good enough to go to another carboot sale. Mum changed out of her wet clothes, we both wrapped up a bit warmer and then we headed out to the carboot sale we usually go to. There were not as many stalls there as there usually is and the DVDs were all £2 each rather than £1 each so I didn't buy anything. Mum picked up a few things though including a weird thing that moos like a cow! On the way home we called in to visit nan briefly and give her back her mobile phone that we'd sorted out for her. The phone in her new flat wasn't going to be reconnected til Wed so it was important that she could use her mobile til then.
On Tue 4th May I weighed myself like I'm now doing fortnightly. It was also my monthly weight to email my dieticians with. My weight was 54.3kg - so up 0.6kg on the previous fortnight and up a total of 1kg in a month. Both my dieticians were very impressed and are happy for me to keep weighing myself and contacting them monthly. I never thought I'd say this, but I don't really want to put any more weight on now. If my weight is up again next month then I'm going to ask my dieticians if I can stop my high calorie puddings because I don't really like them.
That morn I walked to the post office and the local shop and also walked round to the surgery to drop in a prescription for me. That aft I had to return to the local shop when mum discovered that she'd run out of washing liquid for the washing machine. When mum got back from work at the library she showed me her first knitting needle injury - somehow a knitting needle had attacked her leg through her bag and her jeans and had left a visible scratch. Her leg is fine now though.
That evening I went to another meeting of the teenage discussion group in the village. V wasn't there so it was just A and B who lead it, me, K and M. The discussion on Tue eve was very religious - yawn! We did have some interesting discussion, but I'm not sure how we got onto talking about whether knitting is divine or not?!?! Although I'm a very private person about my health I don't mind mentioning it when it's my choice and in my control, so I brought it into the conversation because I felt it was relevant. I started off by saying "I don't know how much you know [because I didn't know if K or M knew anything about my medical history] but I had a transplant a few years ago" I know A knows about it all because she knows my mum and I assumed A had told B everything. So I was really surprised when B said that she didn't know that! We had an interesting discussion about politics at the end. K isn't 18 until the summer so can't vote yet, but the rest of us could. Me, A and B all said that we would be voting Lib Dems and proceeded to discuss all the parties. M kept very quiet. He's very posh, privately educated and quite stuck up so I assumed his quietness was because he's a Conservative supporter! They were all talking about the different politicians they've had coming to their doors to try to swing their votes, but we've not had any of them this year which is probably because we've got a Lib Dems sign in our garden :)
Yesterday (Wed 5th May) I emailed S (the transplant co-ordinator at Hosp A) again because it was 6 weeks since she'd promised me an email and I'd still not heard anything. In this email I just asked if she could please reply to my email from March 22nd as she said she would in her email dated March 23rd. She replied very quickly saying that she'd not forgotten me but she'd been off work for a while. I've been promised a full reply by the end of the week so hopefully I will get that. Only 5 weeks to go til my transition is due to be completed and I'm still no happier about it, eek! I wish S had just dropped me a quick email letting me know that it would be a while til she managed a full reply. Replying 5 weeks later than promised isn't really fair on me - I'm supposed to be learning to trust this team!
Yesterday morning I got up at 8.45am (which is very early for me) because I'd heard the previous day that the presale for Marina and the Diamonds' Oct/Nov tour would start on the Wed. However it didn't say a time, so I got up so I could be at my laptop by 9am in case they went on sale then. I kept refreshing my email page because the link would be sent to me in an email and the email eventually came through at 12.30pm - I'd been sitting there all that time! And as you'll have seen from this blog post, I got tickets!! :D
In the afternoon me and mum popped round to see my nan because although we'd returned her mobile phone on Mon we'd forgotten to return the charger too! I helped my nan sort out a few things on her computer while we were there. And on the way we called in at the local garden centre where mum bought some geraniums for the garden. I tried to persuade her to buy the red ones but she chose some pink ones instead.
Yesterday I discovered that my phone was playing up as although I could receive phone calls and texts I couldn't make them, it kept saying there was a connection error. I phoned my older brother Chris who knows about these kind of things and left a message on his answer machine asking for help. Also my phone alarmed low battery even though I'd charged it recently so that made me wonder if there was a problem with the battery too. The battery has seemed fine since though, so maybe it was just a one off thing.
Dad pointed out to me that there was a double page article in the local paper about ME so I found that to have a read. The article started off well but then went on to say how this sufferer had been cured by something called the Lightning Process and had then gone on to train as a teacher of the Lightning Process. There isn't a cure for ME although there are lots of people offering expensive cures that have no scientific evidence behind them. The Lightning Process is one of the most well known and some people are apparently miraculously cured by it although it sounds very doubtful to me. It costs a lot of money and there are lots of criticisms of it and no scientific proof that it works. So I thought it was a shame that the article in the local paper was so much about what a great cure the Lightning Process is. However, there was one small paragraph about criticisms of it, so at least they were acknowledged.
Today I got up early (9am) and me and mum headed into the city. We drove to the Park & Ride on the outskirts of the city (dropping Alf off in a local town on the way through) and then got a bus into the city centre. I enjoyed listening to Marina and the Diamonds on my iPod on the bus journey. Me and mum went on a long walk out of the city centre along a road with a few charity shops on. I bought 2 cheap books in one charity shop - one was a children's book that I used to like and one was a quick read. We stopped for drinks and then wandered back into town although we did have to ask for directions on the way! We walked for about an hour and a quarter in total then, which I was quite impressed with. When we got back into the city centre we met up with mum's friend for lunch in a cafe. I had a baked potato and we all chatted together. On the way out of the shop I picked up a local magazine because it had an interview with Diana Vickers in it. My tummy pains were bad while we were out :(
Me and mum then split up so she could go to her wool shop and I wandered round the shops but didn't buy anything. When me and mum split up I decided I'd better check to see if my phone was working and to my surprise it was :) So I'm not sure what the problem had been - maybe a network problem. I received a lovely text from Lizzy saying thanks for Mia's presents :) When I'd finished wandering round the shops I wanted to look in I still had a bit of time before I was due to meet up with mum so I found the films section in Waterstones and sat on a comfy sofa reading a book about Pixar animation :) Me and mum met back up, had drinks and some shortbread in a cafe (mum knocked our table which resulted in my glass of milk spilling over my jeans, whoops!) and went into a couple of shops (including M&S for some biscuits for me).
We then headed back to our car on the Park & Ride bus and then mum drove to Tesco on the edge of a local town where she had agreed to pick Alf up. Me and mum did a little Tesco shop while waiting for Alf. I was very pleased that I managed to resist buying Diana Vickers' album. It's on Spotify so I can listen to it for now without having the CD, so I decided to wait til the CD drops in price to buy it and be able to put it onto my iPod.
We dropped Alf off at home and went to our local Polling Station to vote. I saw the start of the BBC's election coverage and hope that the exit poll isn't representative of the actual results. The exit poll was created by asking random voters across the country who they'd voted for. And it suggested that we'll have a hung parliament with Conservatives getting the most seats, followed by Labour. It also suggested that Lib Dems will actually lose some seats. I'm supporting Lib Dems so I hope they do better than that. I do suspect that the Conservatives will win though :( I'm not watching the election coverage on TV tonight, I'll just check how the seats are going on the Internet before I go to bed and hear the final result when I get up tomorrow morn.
When we got home I saw my morning tablets out in the kitchen. I'd got up too early to take them this morn so put them out ready to take before we left the house. But I'd forgotten. Whoops! Think that's the first time I've ever done that. I took my Tac as soon as I got in plus the tabs that I only take in the morn and then tonight I took the tablets that I take twice a day minus my Tac. I think that should be ok as sometimes people have to delay taking their Tac if they're having a Tac blood test done at the hosp.
When we got home I also saw my post. Outnumbered series 2 on DVD arrived, so I'm really looking forward to watching that :) Unfortunately there was also something else waiting for me in the post. I opened it to discover my DLA renewal forms - arrrrgggghhh! The last time I applied for DLA was just after my transplant so lots of things have changed since then - my health problems related to my transplant have reduced but I've developed ME. Unfortunately people who have ME struggle to get DLA. I've got a few months to fill the forms out and dad said he'll help me with them, but I am still worried about it. I found the ESA forms hard, this is going to be even harder.
That's now my day to day updates completed but I'm going to do a couple more updates about other bits and pieces before my blog is completely up to date. It's definitely nearly there now though :)
Mon 3rd May was Bank Holiday Mon so there were some local carboot sales on that me and my parents decided to have a look at. First we went to a one off carboot sale in a pub carpark in a neighbouring village. There I bought a DVD called In America DVD for 50p, 7 DVDs that had been free with newspapers for a total of £1 and 15 CD cases for £1. It was very chilly while we were looking round and there were some light showers too so I left my parents still looking round and went back to sit in the car round the corner to warm up. While I was sitting in the car another shower started up which got quite heavy and then it started hailing. I was very smug sitting all warm and dry in the car. Dad sensibly found some shelter in the pub car park til the hail eased but mum decided to run back to the car in it. She got soaked!
We then went back home and dropped dad off because he'd decided the weather wasn't good enough to go to another carboot sale. Mum changed out of her wet clothes, we both wrapped up a bit warmer and then we headed out to the carboot sale we usually go to. There were not as many stalls there as there usually is and the DVDs were all £2 each rather than £1 each so I didn't buy anything. Mum picked up a few things though including a weird thing that moos like a cow! On the way home we called in to visit nan briefly and give her back her mobile phone that we'd sorted out for her. The phone in her new flat wasn't going to be reconnected til Wed so it was important that she could use her mobile til then.
On Tue 4th May I weighed myself like I'm now doing fortnightly. It was also my monthly weight to email my dieticians with. My weight was 54.3kg - so up 0.6kg on the previous fortnight and up a total of 1kg in a month. Both my dieticians were very impressed and are happy for me to keep weighing myself and contacting them monthly. I never thought I'd say this, but I don't really want to put any more weight on now. If my weight is up again next month then I'm going to ask my dieticians if I can stop my high calorie puddings because I don't really like them.
That morn I walked to the post office and the local shop and also walked round to the surgery to drop in a prescription for me. That aft I had to return to the local shop when mum discovered that she'd run out of washing liquid for the washing machine. When mum got back from work at the library she showed me her first knitting needle injury - somehow a knitting needle had attacked her leg through her bag and her jeans and had left a visible scratch. Her leg is fine now though.
That evening I went to another meeting of the teenage discussion group in the village. V wasn't there so it was just A and B who lead it, me, K and M. The discussion on Tue eve was very religious - yawn! We did have some interesting discussion, but I'm not sure how we got onto talking about whether knitting is divine or not?!?! Although I'm a very private person about my health I don't mind mentioning it when it's my choice and in my control, so I brought it into the conversation because I felt it was relevant. I started off by saying "I don't know how much you know [because I didn't know if K or M knew anything about my medical history] but I had a transplant a few years ago" I know A knows about it all because she knows my mum and I assumed A had told B everything. So I was really surprised when B said that she didn't know that! We had an interesting discussion about politics at the end. K isn't 18 until the summer so can't vote yet, but the rest of us could. Me, A and B all said that we would be voting Lib Dems and proceeded to discuss all the parties. M kept very quiet. He's very posh, privately educated and quite stuck up so I assumed his quietness was because he's a Conservative supporter! They were all talking about the different politicians they've had coming to their doors to try to swing their votes, but we've not had any of them this year which is probably because we've got a Lib Dems sign in our garden :)
Yesterday (Wed 5th May) I emailed S (the transplant co-ordinator at Hosp A) again because it was 6 weeks since she'd promised me an email and I'd still not heard anything. In this email I just asked if she could please reply to my email from March 22nd as she said she would in her email dated March 23rd. She replied very quickly saying that she'd not forgotten me but she'd been off work for a while. I've been promised a full reply by the end of the week so hopefully I will get that. Only 5 weeks to go til my transition is due to be completed and I'm still no happier about it, eek! I wish S had just dropped me a quick email letting me know that it would be a while til she managed a full reply. Replying 5 weeks later than promised isn't really fair on me - I'm supposed to be learning to trust this team!
Yesterday morning I got up at 8.45am (which is very early for me) because I'd heard the previous day that the presale for Marina and the Diamonds' Oct/Nov tour would start on the Wed. However it didn't say a time, so I got up so I could be at my laptop by 9am in case they went on sale then. I kept refreshing my email page because the link would be sent to me in an email and the email eventually came through at 12.30pm - I'd been sitting there all that time! And as you'll have seen from this blog post, I got tickets!! :D
In the afternoon me and mum popped round to see my nan because although we'd returned her mobile phone on Mon we'd forgotten to return the charger too! I helped my nan sort out a few things on her computer while we were there. And on the way we called in at the local garden centre where mum bought some geraniums for the garden. I tried to persuade her to buy the red ones but she chose some pink ones instead.
Yesterday I discovered that my phone was playing up as although I could receive phone calls and texts I couldn't make them, it kept saying there was a connection error. I phoned my older brother Chris who knows about these kind of things and left a message on his answer machine asking for help. Also my phone alarmed low battery even though I'd charged it recently so that made me wonder if there was a problem with the battery too. The battery has seemed fine since though, so maybe it was just a one off thing.
Dad pointed out to me that there was a double page article in the local paper about ME so I found that to have a read. The article started off well but then went on to say how this sufferer had been cured by something called the Lightning Process and had then gone on to train as a teacher of the Lightning Process. There isn't a cure for ME although there are lots of people offering expensive cures that have no scientific evidence behind them. The Lightning Process is one of the most well known and some people are apparently miraculously cured by it although it sounds very doubtful to me. It costs a lot of money and there are lots of criticisms of it and no scientific proof that it works. So I thought it was a shame that the article in the local paper was so much about what a great cure the Lightning Process is. However, there was one small paragraph about criticisms of it, so at least they were acknowledged.
Today I got up early (9am) and me and mum headed into the city. We drove to the Park & Ride on the outskirts of the city (dropping Alf off in a local town on the way through) and then got a bus into the city centre. I enjoyed listening to Marina and the Diamonds on my iPod on the bus journey. Me and mum went on a long walk out of the city centre along a road with a few charity shops on. I bought 2 cheap books in one charity shop - one was a children's book that I used to like and one was a quick read. We stopped for drinks and then wandered back into town although we did have to ask for directions on the way! We walked for about an hour and a quarter in total then, which I was quite impressed with. When we got back into the city centre we met up with mum's friend for lunch in a cafe. I had a baked potato and we all chatted together. On the way out of the shop I picked up a local magazine because it had an interview with Diana Vickers in it. My tummy pains were bad while we were out :(
Me and mum then split up so she could go to her wool shop and I wandered round the shops but didn't buy anything. When me and mum split up I decided I'd better check to see if my phone was working and to my surprise it was :) So I'm not sure what the problem had been - maybe a network problem. I received a lovely text from Lizzy saying thanks for Mia's presents :) When I'd finished wandering round the shops I wanted to look in I still had a bit of time before I was due to meet up with mum so I found the films section in Waterstones and sat on a comfy sofa reading a book about Pixar animation :) Me and mum met back up, had drinks and some shortbread in a cafe (mum knocked our table which resulted in my glass of milk spilling over my jeans, whoops!) and went into a couple of shops (including M&S for some biscuits for me).
We then headed back to our car on the Park & Ride bus and then mum drove to Tesco on the edge of a local town where she had agreed to pick Alf up. Me and mum did a little Tesco shop while waiting for Alf. I was very pleased that I managed to resist buying Diana Vickers' album. It's on Spotify so I can listen to it for now without having the CD, so I decided to wait til the CD drops in price to buy it and be able to put it onto my iPod.
We dropped Alf off at home and went to our local Polling Station to vote. I saw the start of the BBC's election coverage and hope that the exit poll isn't representative of the actual results. The exit poll was created by asking random voters across the country who they'd voted for. And it suggested that we'll have a hung parliament with Conservatives getting the most seats, followed by Labour. It also suggested that Lib Dems will actually lose some seats. I'm supporting Lib Dems so I hope they do better than that. I do suspect that the Conservatives will win though :( I'm not watching the election coverage on TV tonight, I'll just check how the seats are going on the Internet before I go to bed and hear the final result when I get up tomorrow morn.
When we got home I saw my morning tablets out in the kitchen. I'd got up too early to take them this morn so put them out ready to take before we left the house. But I'd forgotten. Whoops! Think that's the first time I've ever done that. I took my Tac as soon as I got in plus the tabs that I only take in the morn and then tonight I took the tablets that I take twice a day minus my Tac. I think that should be ok as sometimes people have to delay taking their Tac if they're having a Tac blood test done at the hosp.
When we got home I also saw my post. Outnumbered series 2 on DVD arrived, so I'm really looking forward to watching that :) Unfortunately there was also something else waiting for me in the post. I opened it to discover my DLA renewal forms - arrrrgggghhh! The last time I applied for DLA was just after my transplant so lots of things have changed since then - my health problems related to my transplant have reduced but I've developed ME. Unfortunately people who have ME struggle to get DLA. I've got a few months to fill the forms out and dad said he'll help me with them, but I am still worried about it. I found the ESA forms hard, this is going to be even harder.
That's now my day to day updates completed but I'm going to do a couple more updates about other bits and pieces before my blog is completely up to date. It's definitely nearly there now though :)
Tuesday, 4 May 2010
Getting up to date with April - part 5 (more day to day stuff)
On Wed 21st April I was woken early by dad shouting Alf because he'd missed his bus to college. Dad ended up running him to a nearby bus stop in the car and Alf caught the bus there. I managed to get back to sleep after that though :) A science GCSE certificate from my secondary school arrived in the post that morn. I realised a little while ago that I'd never received it so Claire chased it up for me. That morn I had to wait in for some deliveries because my mum was out. My Tac was delivered and dad received a waterproof MP3 player for him to listen to while swimming. He'd got one a few weeks ago but it didn't work, so he'd sent it back for an exchange. Luckily the second one he received worked fine and dad seems very happy with it.
Mum had to go to the village library for a lesson in emails. Mum doesn't use her emails at work because the library is single manned so she hasn't got time to read through all her emails (most of which are county council ones that are sent to lots of people and have no relevance to my mum) and reply to the ones that need replying to while serving customers. And she's not going to go in and do it in her own time and not get paid for it. Mum's opinion is that if it's important people can phone her! However the higher people think that because mum doesn't use her emails she can't use her emails so arranged for her to have a lesson. But the lesson was a complete waste of time. The email programme my mum has to use looked different to the one that the teacher used, so she didn't know what she was doing! My mum hasn't had anything to do with her emails for a couple of years now so she had 1500 unwanted emails to reply to. Between them they couldn't find a way to delete them all so the teacher made my mum delete them one-by-one and then delete them one-by-one from the deleted items folder! And that was the lesson over because that took a couple of hours! How ridiculous. I think my mum is attempting to learn the basics of her emails now because there's a qualification she wants to get but she'll need to use emails to get it.
When my mum got back we popped round to the local shop and the village butchers together. We couldn't believe that the butchers had no free range chicken! So we didn't get any chicken for them - mum changed the meal we were going to have for tea and based it around ham instead of chicken. If we'd have wanted free range chicken we would have had to drive into town to go to a supermarket. I thought it was ridiculous that the village butchers had no free range chicken, I think I might write a letter to them about it - it's on my list of things to do.
That evening Chris and Sophie popped round again and I spoke to Lizzy on the phone to confirm Sat.
On Thur 22nd April I attended my first physio appt at Hosp H. I was very nervous beforehand in case I had another physio who knew nothing about ME but it went much better than I expected. The physio I saw knew a lot about ME and was very easy to talk to. We talked about the importance of pacing (a technique for managing energy levels in ME). It sounds like her idea of pacing would be for me to work out my baseline for various activities (how much I can do comfortably) and then try to gradually increase that. She gave me an activity diary to fill out for a week (which I've already done) and asked me to find my walking baseline by timing how long I can walk for on a good day, an ok day and a bad day and then averaging the times out. I did try this once on an ok day but found I could just keep walking until I got to where I was going. I recorded when my legs felt more tired though and would have recorded when my heels started hurting but they were fine that day. I'll show that and the activity diary to my physio when I see her again on Wed 12th May. I also mentioned the pain I'm getting in my feet due to plantar fasciitis so she said that she'll have a look at my feet next time for me.
After my physio appt I met mum on a bench outside the hosp where she'd struck up conversation with a stranger. Hehe. Then we had our packed lunches in the hospital quadrangle, which brought back some memories of spending time there when I was younger. After lunch we went to visit my Nan who at this point hoped to be discharged the following day. She hadn't had an xray as the doctors had decided that she didn't have a broken rib. I think that they thought that her feeling ill had just been related to her heart problem. That evening Chris popped round.
I didn't go out on Fri 23rd April but had a busy morning wrapping some presents for friends. It was Claire's birthday the following Mon (26th April), but she was coming round that evening so I wanted to be able to give her her wrapped presents then. I bought Claire the Radio Times exclusive Doctor Who book and 2 DVDs (Speed and Memoirs of a Geisha). I also wrapped up the doll we'd bought for Mia's 4th birthday. It isn't her birthday until this Thur (6th May), but because her and Lizzy were coming round the following day we wanted to give Lizzy Mia's present then. That afternoon I decluttered and tidied my room a little bit and then Claire came round in the evening.
On Sat 24th April my Nan was discharged from hospital and dad helped her settle back at home in her flat :) Lizzy and Mia came round about lunchtime to spend the afternoon with us. It was a lovely warm sunny day so we sat out in the garden and I had to get changed out of my poloneck and into a t-shirt! We chatted a lot, went to a local jumble sale (where I bought the Joseph soundtrack on CD and A Series of Unfortunate Events audiobook for 25p each) and had a BBQ for tea. Me and Lizzy also played on my Wii together but Mia decided she wanted to play too so that was good fun :) I asked Lizzy to record Holly's Battlefront prog when it was on TV again a little while ago and write it to DVD for me, so when she came round she bought 5 DVDs each with a copy of the programme on :) Lizzy also lent me some short story books that she thought I could try because I can't read novels at the moment. I've only tried one so far but I managed to read it :)
On the morn of Sun 25th April lots of old Mr Gumpy style cars came driving down our road. Mum sat out on the front bench and waved to each of them but she often didn't get a response from the snooty drivers. Mum thought she saw about 70 in total. We only live in a little village so this was quite intriguing! Mum heard from someone that they were going to a posh house in the next village (not really sure why), so we had a walk there to look for the cars. Unfortunately they'd all left by this point - they must have gone a different way as they didn't go back past our house. Then we walked to the village bowls club where dad was playing bowls. We stopped and chatted to people there for about an hour. I had no idea who most of the people were but everyone seemed to know me and everything about my health too! Thanks mum - she tells everyone everything whereas I like to be a bit more private! I wanted a drink there but they didn't have any milk or apple juice. They only had J2Os (which I think would be too strong for me), fizzy drinks (yuk) and alcoholic drinks.
I heard from Becky that the Telegraph were giving away Dr Who audiobooks. I'd missed Sat's because I didn't know at that time but wandered round to the local shop on Sun to have a look. The Sun Telegraph only had half of the audiobook (the second half would be in Mon's paper) and cost almost £2 so I decided against it. I'm sure they'll turn up at carboot sales and in charity shops soon.
On the morn of Mon 26th April I phoned Barnardo's to see if they had anything for me to do if I went in that afternoon. Usually the manager (who I know) answers the phone, but she wasn't in that day so the deputy manager answered the phone instead. She had no idea who I was so had to go off to ask if anyone else had heard of me! Then when she got back to the phone after speaking to someone else she said "Does you mum bring you in?". I'd prefer not to be known as the volunteer who's mum brings her in! Then I was told that there was no work for me that day.
Me and mum went into town anyway. On the way we went via someone's house to pick up a Doctor Who DVD (Utopia from series 3) that they had been offering on Freecycle and I'd got. We went into all the usual charity shops. In a charity shop I nearly bought the Blue Planet DVD boxset for £5 but I left it to think about it and when I went back for it it had been sold. Never mind. I bought 3 Agatha Christie audio books in one charity shop for 75p each and bought both parts of a Dr Who audiobook called The Stone Rose (which had originally been free with the Radio Times) for 50p in another charity shop. Me and mum stopped for drinks in a cafe, but again I didn't have much luck with drinks. They couldn't sell drinks of milk and didn't have any clear apple juice so I had cloudy apple juice instead (which I don't like as much). Me and mum did the crossword while we had our drinks. Then we called in at 2 supermarkets before heading home.
Once we got back to the village I called in at the surgery to pick up some tablets I'd ordered. I also found out that a new suncream had been ordered for me.
Mum had to go to the village library for a lesson in emails. Mum doesn't use her emails at work because the library is single manned so she hasn't got time to read through all her emails (most of which are county council ones that are sent to lots of people and have no relevance to my mum) and reply to the ones that need replying to while serving customers. And she's not going to go in and do it in her own time and not get paid for it. Mum's opinion is that if it's important people can phone her! However the higher people think that because mum doesn't use her emails she can't use her emails so arranged for her to have a lesson. But the lesson was a complete waste of time. The email programme my mum has to use looked different to the one that the teacher used, so she didn't know what she was doing! My mum hasn't had anything to do with her emails for a couple of years now so she had 1500 unwanted emails to reply to. Between them they couldn't find a way to delete them all so the teacher made my mum delete them one-by-one and then delete them one-by-one from the deleted items folder! And that was the lesson over because that took a couple of hours! How ridiculous. I think my mum is attempting to learn the basics of her emails now because there's a qualification she wants to get but she'll need to use emails to get it.
When my mum got back we popped round to the local shop and the village butchers together. We couldn't believe that the butchers had no free range chicken! So we didn't get any chicken for them - mum changed the meal we were going to have for tea and based it around ham instead of chicken. If we'd have wanted free range chicken we would have had to drive into town to go to a supermarket. I thought it was ridiculous that the village butchers had no free range chicken, I think I might write a letter to them about it - it's on my list of things to do.
That evening Chris and Sophie popped round again and I spoke to Lizzy on the phone to confirm Sat.
On Thur 22nd April I attended my first physio appt at Hosp H. I was very nervous beforehand in case I had another physio who knew nothing about ME but it went much better than I expected. The physio I saw knew a lot about ME and was very easy to talk to. We talked about the importance of pacing (a technique for managing energy levels in ME). It sounds like her idea of pacing would be for me to work out my baseline for various activities (how much I can do comfortably) and then try to gradually increase that. She gave me an activity diary to fill out for a week (which I've already done) and asked me to find my walking baseline by timing how long I can walk for on a good day, an ok day and a bad day and then averaging the times out. I did try this once on an ok day but found I could just keep walking until I got to where I was going. I recorded when my legs felt more tired though and would have recorded when my heels started hurting but they were fine that day. I'll show that and the activity diary to my physio when I see her again on Wed 12th May. I also mentioned the pain I'm getting in my feet due to plantar fasciitis so she said that she'll have a look at my feet next time for me.
After my physio appt I met mum on a bench outside the hosp where she'd struck up conversation with a stranger. Hehe. Then we had our packed lunches in the hospital quadrangle, which brought back some memories of spending time there when I was younger. After lunch we went to visit my Nan who at this point hoped to be discharged the following day. She hadn't had an xray as the doctors had decided that she didn't have a broken rib. I think that they thought that her feeling ill had just been related to her heart problem. That evening Chris popped round.
I didn't go out on Fri 23rd April but had a busy morning wrapping some presents for friends. It was Claire's birthday the following Mon (26th April), but she was coming round that evening so I wanted to be able to give her her wrapped presents then. I bought Claire the Radio Times exclusive Doctor Who book and 2 DVDs (Speed and Memoirs of a Geisha). I also wrapped up the doll we'd bought for Mia's 4th birthday. It isn't her birthday until this Thur (6th May), but because her and Lizzy were coming round the following day we wanted to give Lizzy Mia's present then. That afternoon I decluttered and tidied my room a little bit and then Claire came round in the evening.
On Sat 24th April my Nan was discharged from hospital and dad helped her settle back at home in her flat :) Lizzy and Mia came round about lunchtime to spend the afternoon with us. It was a lovely warm sunny day so we sat out in the garden and I had to get changed out of my poloneck and into a t-shirt! We chatted a lot, went to a local jumble sale (where I bought the Joseph soundtrack on CD and A Series of Unfortunate Events audiobook for 25p each) and had a BBQ for tea. Me and Lizzy also played on my Wii together but Mia decided she wanted to play too so that was good fun :) I asked Lizzy to record Holly's Battlefront prog when it was on TV again a little while ago and write it to DVD for me, so when she came round she bought 5 DVDs each with a copy of the programme on :) Lizzy also lent me some short story books that she thought I could try because I can't read novels at the moment. I've only tried one so far but I managed to read it :)
On the morn of Sun 25th April lots of old Mr Gumpy style cars came driving down our road. Mum sat out on the front bench and waved to each of them but she often didn't get a response from the snooty drivers. Mum thought she saw about 70 in total. We only live in a little village so this was quite intriguing! Mum heard from someone that they were going to a posh house in the next village (not really sure why), so we had a walk there to look for the cars. Unfortunately they'd all left by this point - they must have gone a different way as they didn't go back past our house. Then we walked to the village bowls club where dad was playing bowls. We stopped and chatted to people there for about an hour. I had no idea who most of the people were but everyone seemed to know me and everything about my health too! Thanks mum - she tells everyone everything whereas I like to be a bit more private! I wanted a drink there but they didn't have any milk or apple juice. They only had J2Os (which I think would be too strong for me), fizzy drinks (yuk) and alcoholic drinks.
I heard from Becky that the Telegraph were giving away Dr Who audiobooks. I'd missed Sat's because I didn't know at that time but wandered round to the local shop on Sun to have a look. The Sun Telegraph only had half of the audiobook (the second half would be in Mon's paper) and cost almost £2 so I decided against it. I'm sure they'll turn up at carboot sales and in charity shops soon.
On the morn of Mon 26th April I phoned Barnardo's to see if they had anything for me to do if I went in that afternoon. Usually the manager (who I know) answers the phone, but she wasn't in that day so the deputy manager answered the phone instead. She had no idea who I was so had to go off to ask if anyone else had heard of me! Then when she got back to the phone after speaking to someone else she said "Does you mum bring you in?". I'd prefer not to be known as the volunteer who's mum brings her in! Then I was told that there was no work for me that day.
Me and mum went into town anyway. On the way we went via someone's house to pick up a Doctor Who DVD (Utopia from series 3) that they had been offering on Freecycle and I'd got. We went into all the usual charity shops. In a charity shop I nearly bought the Blue Planet DVD boxset for £5 but I left it to think about it and when I went back for it it had been sold. Never mind. I bought 3 Agatha Christie audio books in one charity shop for 75p each and bought both parts of a Dr Who audiobook called The Stone Rose (which had originally been free with the Radio Times) for 50p in another charity shop. Me and mum stopped for drinks in a cafe, but again I didn't have much luck with drinks. They couldn't sell drinks of milk and didn't have any clear apple juice so I had cloudy apple juice instead (which I don't like as much). Me and mum did the crossword while we had our drinks. Then we called in at 2 supermarkets before heading home.
Once we got back to the village I called in at the surgery to pick up some tablets I'd ordered. I also found out that a new suncream had been ordered for me.
Tuesday, 6 April 2010
Long update part 2
This is part 2 of my update. You can read part 1 here.
On Sat eve Claire came round for tea and brought her new boyfriend John with her. We'd never met John before, but he seemed very nice, much better than Claire's previous boyfriend! We chatted a lot, played on New Super Mario Bros Wii (which we made some good progress on) and all watched Dr Who together. If you missed it you can watch it here. I miss David Tennant, but thought I'd give Matt Smith a chance and he was much better than I expected. I thought the episode was a really good start to the series, although I thought it was much more funny than scary. I was expecting something very scary from Steven Moffat after some of his previous episodes such as The Empty Child, The Doctor Dances and Blink, but I'm sure we'll get some scary episodes as the series progresses. I'm looking forward to next week's episode. Matt Smith looks just like one of Alf's friends, so when he came round later that evening we had fun teasing him about it ;)
On Sunday I went to the carboot sale again with mum and dad. I took the wrong region DVDs with me to try to swap, but I couldn't remember what stalls I'd bought them from 3 weeks ago so I'm going to give up on that now. The carboot sale was much better than the previous couple of weeks and I came home with 6 DVDs (The Butterfly Effect, My Summer of Love, Just Married, The Bicentenial Man, How To Lose a Guy in 10 Days and I Capture The Castle) for £1 each and 2 PS1 games (Monopoly and Theme Park World) for £1 and 50p each. Mum bought some Get Well Soon Me2You bears for me to use as presents for people.
As well as the PS games I've bought from carboot sales I've also bought a few more from eBay - Worms 4 Mayhem which is a PS2 game and Crash Team Racing and Frogger which are PS1 games. I'm going to continue looking in charity shops and at carboot sales for games, but I don't plan to buy any more from eBay for the time being as there aren't any more I specifically want.
On Sun aft Chris and Sophie called round for a little while. I didn't go out yesterday and probably wont today either, as I'm just having a relaxing day at home. My family don't celebrate Easter, so we haven't done anything special this weekend but it was nice having dad at home yesterday (he had to work Good Friday though). Chris' grandma sent us an Easter card with two £5 notes in it - one for me and one for Alf :)
This week I have also helped mum produce some posters for library displays on the computer, done some crosswords from the Independent newspaper with my parents, attempted a few Sudoku puzzles, read my latest Official Nintendo Magazine, sorted through some old postcards that mum was throwing out and rescued some of places we've been to, rang up about an advert in the paper about some DVDs for sale (none I liked the sound of though) and emailed an friend from sixth form who I'd not been in touch with for quite a while. I've also been doing some pet research on the Internet which has led me to decide that ideally I'd like an African pygmy hedgehog or a chinchilla :) I'm now going to wait til I see my Hosp A consultant in June to ask him about the possibility of getting a pet. And this week I've cut my nails!!! They were very long as I'd not cut them for a couple of months, but one broke, so I decided to cut them all. I know they'll grow again but currently it feels very odd having short nails!
6 or 7 years ago my parents bought a 12 foot trampoline for our garden. We said goodbye to it at the weekend. I used to enjoy using it but since my transplant bouncing on it just made me feel ill. Dad never used it and mum only used it occasionally. Alf originally used it a lot but then didn't use it as much. Dad advertised the trampoline on Freecycle last week and 6 people were interested. Dad chose to give it to a family with 4 children under 11 as we thought they'd get the most use out of it. On Sat dad packed it up and it was collected. It's quite sad now it's gone as it had been in our garden for so long. On the lawn under where the trampoline was we have the start of 3 trees, a bramble and lots of other plans growing because birds used to go under there a lot. Mum and dad are glad they've got more room for growing vegetables in the garden now.
As well as playing on New Super Mario Wii with Claire and on my own, I've also enjoyed playing on my PS2 this week and testing some of my new games out now they've all arrived in the post. All of the ones I've bought from eBay and from charity shops have worked faultlessly. Most of the games I've bought from carboot sales have as well, apart from one. The one that doesn't work is Spyro Year of the Dragon but I bought it for only 30p from a carboot and didn't think it would work due to being so scratched. It was worth a gamble though at that price. I also received my PS1 memory card towards the end of last week so I can now save my progress on the PS1 games. Some of the games I've only played on briefly to check that they work, but I've played quite a bit more on Sonic Heroes and a new Sonic game that arrived in the post this week called Sonic Mega Collection, which includes quite a few old style Sonic games, which I prefer to the more modern ones :) I also started playing Canis Canem Edit (aka Bully) and really like what I've seen of it so far so am looking forward to playing on it some more. Grand Theft Auto: San Andreas made no sense at all to me though as I couldn't work out what I was supposed to do! I've lent it to Sophie at the moment, but when she returns it I'm going to ask her if she can help me get to grips with it. I've really enjoyed playing on Frogger because it's the same version that we got when we got our first computer 12 years ago so playing that is very nostalgic :)
This week I've listened to The Family Jewels by Marina and the Diamonds 4 times (can you tell I like it a lot?!) and Lights by Ellie Goulding once. I've tested my new pillow speaker with both of those albums too - The Family Jewels when I was resting in bed one day and didn't want to fall asleep and Lights before I went to sleep one night. Ellie Goulding's next single has been announced as being Guns and Horses and will be released on 7th May. Diana Vickers' debut single Once will be out in a week or two. I found a good interview with her here. I was disappointed that Lady Gaga and Beyonce got to number 1 with Telephone last weekend. I think it's a horrible song although I have to admit it is very catchy. I was glad that Scouting for Girls knocked them off the number one spot this Sun with This Aint A Love Song. I love that song and downloaded it to help them get to number one :)
My mum discovered a great group this week called The Baseballs. They're a German group who have released an album called Strike which is made up of really original 50s style rock and roll covers of well known pop songs such as Bleeding Love by Leona Lewis, Umbrella by Rhianna, Angels by Robbie Williams and Hot and Cold by Katy Perry. The album is on Spotify so if you've got that have a listen and see what you think. Or if not have a listen on Youtube using the links above.
After our hard disc recorder not working for weeks I formatted it (which completely wipes it including all the recorded programmes) and it then worked again! The remote was really frustrating because lots of key buttons didn't work, so dad bought a new one online, which works faultlessly. It's great being able to use the hard disc recorder again.
I couldn't believe it when Claudia Winkleman was named as the new host of Film 2010. Why why why?! I can't stand her and can't imagine anyone worse presenting it!
On TV this week as well as watching Ashes to Ashes and Doctor Who, I've also watched Doctor Who Confidential, the last episode of Tracy Beaker Returns, a rubbish programme about helicopter rescues with dad one evening while we were having tea, a couple of episodes of Embarrassing Bodies (I find medical programmes fascinating), Friday Night with Jonathan Ross (disappointingly Sandra Bullock wasn't on it despite the Radio Times saying she would be, but Matt Smith was on it), an episode of Bondi Vet, two episodes of Supernanny (it has been on E4 in the early hours of the morning when I'm nocturnal), the final episode of Married Single Other (what an odd series - the first 3 episodes were light-hearted and funny, the final 3 episodes were very sad), Ultimate Movie Toons (because Mika sang on it), 2 episodes of Children's Hospital, the final episode of One Born Every Minute, an episode of Countdown (because someone from AYME was on it), the first episode of a new BBC series called Great Ormond Street (which was really well made and very powerful, definitely worth watching as it's the best medical programme I've seen in a long time) and odd bits and pieces on the music channels.
I've finished watching some DVD boxsets since my last update. To finish Ashes to Ashes series 2 I watched episodes 4 to 8, the cast 80s quiz and the behind the scenes documentary. I also watched series 2 of Outnumbered on DVD (which I rented) plus the extra features. I've also bought the second series of Jam and Jerusalem on DVD.
This week I've watched quite a few films on DVD. Most were ones I'd not seen before, apart from Pixar's Cars which I rewatched. I enjoyed watching Nicholas' Gift (a moving film about organ donation based on a true story), The Diving Bell and the Butterfly (an artistically made and unusual film based on a true story about a French journalist who wrote a book while all his muscles apart from one eyelid had been paralysed due to a stroke), Sliding Doors (an original thought provoking film), Runaway Bride (a very funny Julia Roberts romcom) and Bride and Prejudice (a Bollywood take on Pride and Prejudice). Another film I watched was called The Darjeeling Express, but it was unusual and I don't think I really enjoyed it. And I watched an awful film called Closer. I rarely give up on films but I just couldn't finish this one as it was so bad - don't watch it!
In the post this week I received a letter from Tesco DVD rental with some vouchers for a 2 month free trial for me to give to friends. If anyone is interested in one leave a comment and I'll let you have the code.
I have no firm plans for the next couple of days but might pop into Barnardo's tomorrow if I feel up to it. On Thur eve I'm really looking forward to the return of a great TV series called Outnumbered. On Fri Claire is coming round and we're going to watch a DVD, play on the Wii (New Super Mario Bros Wii) and the PS2 (Harry Potter Quidditch World Cup) and have tea before mum and Claire go to mum's fortnightly knitting group. Mum's group is called Knit Lit and a couple of months ago a journalist attended one of their meetings. This month there is an article all about them in a local magazine!
On Sat I hope to attend an AYME meet-up, which is being organised by the same girl who's meet-up I went to before Christmas. That'll depend on how I feel though because to get there involves a 30min car journey, a 40min train ride and then a taxi journey. And hopefully on Sun we'll browse round the carboot sale again. Next week and the following week are full of medical appts and other commitments, so that'll be hectic! I'll blog about that nearer the time though.
On Sat eve Claire came round for tea and brought her new boyfriend John with her. We'd never met John before, but he seemed very nice, much better than Claire's previous boyfriend! We chatted a lot, played on New Super Mario Bros Wii (which we made some good progress on) and all watched Dr Who together. If you missed it you can watch it here. I miss David Tennant, but thought I'd give Matt Smith a chance and he was much better than I expected. I thought the episode was a really good start to the series, although I thought it was much more funny than scary. I was expecting something very scary from Steven Moffat after some of his previous episodes such as The Empty Child, The Doctor Dances and Blink, but I'm sure we'll get some scary episodes as the series progresses. I'm looking forward to next week's episode. Matt Smith looks just like one of Alf's friends, so when he came round later that evening we had fun teasing him about it ;)
On Sunday I went to the carboot sale again with mum and dad. I took the wrong region DVDs with me to try to swap, but I couldn't remember what stalls I'd bought them from 3 weeks ago so I'm going to give up on that now. The carboot sale was much better than the previous couple of weeks and I came home with 6 DVDs (The Butterfly Effect, My Summer of Love, Just Married, The Bicentenial Man, How To Lose a Guy in 10 Days and I Capture The Castle) for £1 each and 2 PS1 games (Monopoly and Theme Park World) for £1 and 50p each. Mum bought some Get Well Soon Me2You bears for me to use as presents for people.
As well as the PS games I've bought from carboot sales I've also bought a few more from eBay - Worms 4 Mayhem which is a PS2 game and Crash Team Racing and Frogger which are PS1 games. I'm going to continue looking in charity shops and at carboot sales for games, but I don't plan to buy any more from eBay for the time being as there aren't any more I specifically want.
On Sun aft Chris and Sophie called round for a little while. I didn't go out yesterday and probably wont today either, as I'm just having a relaxing day at home. My family don't celebrate Easter, so we haven't done anything special this weekend but it was nice having dad at home yesterday (he had to work Good Friday though). Chris' grandma sent us an Easter card with two £5 notes in it - one for me and one for Alf :)
This week I have also helped mum produce some posters for library displays on the computer, done some crosswords from the Independent newspaper with my parents, attempted a few Sudoku puzzles, read my latest Official Nintendo Magazine, sorted through some old postcards that mum was throwing out and rescued some of places we've been to, rang up about an advert in the paper about some DVDs for sale (none I liked the sound of though) and emailed an friend from sixth form who I'd not been in touch with for quite a while. I've also been doing some pet research on the Internet which has led me to decide that ideally I'd like an African pygmy hedgehog or a chinchilla :) I'm now going to wait til I see my Hosp A consultant in June to ask him about the possibility of getting a pet. And this week I've cut my nails!!! They were very long as I'd not cut them for a couple of months, but one broke, so I decided to cut them all. I know they'll grow again but currently it feels very odd having short nails!
6 or 7 years ago my parents bought a 12 foot trampoline for our garden. We said goodbye to it at the weekend. I used to enjoy using it but since my transplant bouncing on it just made me feel ill. Dad never used it and mum only used it occasionally. Alf originally used it a lot but then didn't use it as much. Dad advertised the trampoline on Freecycle last week and 6 people were interested. Dad chose to give it to a family with 4 children under 11 as we thought they'd get the most use out of it. On Sat dad packed it up and it was collected. It's quite sad now it's gone as it had been in our garden for so long. On the lawn under where the trampoline was we have the start of 3 trees, a bramble and lots of other plans growing because birds used to go under there a lot. Mum and dad are glad they've got more room for growing vegetables in the garden now.
As well as playing on New Super Mario Wii with Claire and on my own, I've also enjoyed playing on my PS2 this week and testing some of my new games out now they've all arrived in the post. All of the ones I've bought from eBay and from charity shops have worked faultlessly. Most of the games I've bought from carboot sales have as well, apart from one. The one that doesn't work is Spyro Year of the Dragon but I bought it for only 30p from a carboot and didn't think it would work due to being so scratched. It was worth a gamble though at that price. I also received my PS1 memory card towards the end of last week so I can now save my progress on the PS1 games. Some of the games I've only played on briefly to check that they work, but I've played quite a bit more on Sonic Heroes and a new Sonic game that arrived in the post this week called Sonic Mega Collection, which includes quite a few old style Sonic games, which I prefer to the more modern ones :) I also started playing Canis Canem Edit (aka Bully) and really like what I've seen of it so far so am looking forward to playing on it some more. Grand Theft Auto: San Andreas made no sense at all to me though as I couldn't work out what I was supposed to do! I've lent it to Sophie at the moment, but when she returns it I'm going to ask her if she can help me get to grips with it. I've really enjoyed playing on Frogger because it's the same version that we got when we got our first computer 12 years ago so playing that is very nostalgic :)
This week I've listened to The Family Jewels by Marina and the Diamonds 4 times (can you tell I like it a lot?!) and Lights by Ellie Goulding once. I've tested my new pillow speaker with both of those albums too - The Family Jewels when I was resting in bed one day and didn't want to fall asleep and Lights before I went to sleep one night. Ellie Goulding's next single has been announced as being Guns and Horses and will be released on 7th May. Diana Vickers' debut single Once will be out in a week or two. I found a good interview with her here. I was disappointed that Lady Gaga and Beyonce got to number 1 with Telephone last weekend. I think it's a horrible song although I have to admit it is very catchy. I was glad that Scouting for Girls knocked them off the number one spot this Sun with This Aint A Love Song. I love that song and downloaded it to help them get to number one :)
My mum discovered a great group this week called The Baseballs. They're a German group who have released an album called Strike which is made up of really original 50s style rock and roll covers of well known pop songs such as Bleeding Love by Leona Lewis, Umbrella by Rhianna, Angels by Robbie Williams and Hot and Cold by Katy Perry. The album is on Spotify so if you've got that have a listen and see what you think. Or if not have a listen on Youtube using the links above.
After our hard disc recorder not working for weeks I formatted it (which completely wipes it including all the recorded programmes) and it then worked again! The remote was really frustrating because lots of key buttons didn't work, so dad bought a new one online, which works faultlessly. It's great being able to use the hard disc recorder again.
I couldn't believe it when Claudia Winkleman was named as the new host of Film 2010. Why why why?! I can't stand her and can't imagine anyone worse presenting it!
On TV this week as well as watching Ashes to Ashes and Doctor Who, I've also watched Doctor Who Confidential, the last episode of Tracy Beaker Returns, a rubbish programme about helicopter rescues with dad one evening while we were having tea, a couple of episodes of Embarrassing Bodies (I find medical programmes fascinating), Friday Night with Jonathan Ross (disappointingly Sandra Bullock wasn't on it despite the Radio Times saying she would be, but Matt Smith was on it), an episode of Bondi Vet, two episodes of Supernanny (it has been on E4 in the early hours of the morning when I'm nocturnal), the final episode of Married Single Other (what an odd series - the first 3 episodes were light-hearted and funny, the final 3 episodes were very sad), Ultimate Movie Toons (because Mika sang on it), 2 episodes of Children's Hospital, the final episode of One Born Every Minute, an episode of Countdown (because someone from AYME was on it), the first episode of a new BBC series called Great Ormond Street (which was really well made and very powerful, definitely worth watching as it's the best medical programme I've seen in a long time) and odd bits and pieces on the music channels.
I've finished watching some DVD boxsets since my last update. To finish Ashes to Ashes series 2 I watched episodes 4 to 8, the cast 80s quiz and the behind the scenes documentary. I also watched series 2 of Outnumbered on DVD (which I rented) plus the extra features. I've also bought the second series of Jam and Jerusalem on DVD.
This week I've watched quite a few films on DVD. Most were ones I'd not seen before, apart from Pixar's Cars which I rewatched. I enjoyed watching Nicholas' Gift (a moving film about organ donation based on a true story), The Diving Bell and the Butterfly (an artistically made and unusual film based on a true story about a French journalist who wrote a book while all his muscles apart from one eyelid had been paralysed due to a stroke), Sliding Doors (an original thought provoking film), Runaway Bride (a very funny Julia Roberts romcom) and Bride and Prejudice (a Bollywood take on Pride and Prejudice). Another film I watched was called The Darjeeling Express, but it was unusual and I don't think I really enjoyed it. And I watched an awful film called Closer. I rarely give up on films but I just couldn't finish this one as it was so bad - don't watch it!
In the post this week I received a letter from Tesco DVD rental with some vouchers for a 2 month free trial for me to give to friends. If anyone is interested in one leave a comment and I'll let you have the code.
I have no firm plans for the next couple of days but might pop into Barnardo's tomorrow if I feel up to it. On Thur eve I'm really looking forward to the return of a great TV series called Outnumbered. On Fri Claire is coming round and we're going to watch a DVD, play on the Wii (New Super Mario Bros Wii) and the PS2 (Harry Potter Quidditch World Cup) and have tea before mum and Claire go to mum's fortnightly knitting group. Mum's group is called Knit Lit and a couple of months ago a journalist attended one of their meetings. This month there is an article all about them in a local magazine!
On Sat I hope to attend an AYME meet-up, which is being organised by the same girl who's meet-up I went to before Christmas. That'll depend on how I feel though because to get there involves a 30min car journey, a 40min train ride and then a taxi journey. And hopefully on Sun we'll browse round the carboot sale again. Next week and the following week are full of medical appts and other commitments, so that'll be hectic! I'll blog about that nearer the time though.
Tuesday, 23 February 2010
Nocturnalism, AYME RC, family meal and music
I've not left it long since my last blog update but from looking at my reminder notes I think this might be quite a lengthy blog, sorry. I'll try not to waffle too much! :P
On Fri I heard from Liver Direct and because my Tac level was high again they wanted me to lower the dose. I need all my bloods repeating soon, either this week or next week I'm not sure exactly when because I haven't received the bloods letter yet. If the rest of my bloods are ok then they can go back to 3 monthly, so fingers crossed. My Tac level might need checking via a fingerprick more regularly though until it stabilises around my target level.
On Fri my dietician also got back to me and confirmed that the clinic at Hosp A on 10th March will be a joint clinic with both of my consultants. I've already started a list of things I want to talk to them about! :P
And on Fri I checked my bank account online and saw that my backdated ESA had gone in :D I I also heard that my friend Rosie has been granted ESA without requiring a medical assessment, yay! :D On Sat I received a letter in the post confirming the date change of my next Pathways to Work interview. That morning I also received a letter asking me if I'd like to trial some new illeostomy supplies! I think a company must still have me on their mailing list despite me having my illeostomy reversed over 18 months ago, lol.
On Sat I heard that my friend Holly C's Give and Let Live Books were ready so I ordered one :) You can find out more here.
I thought my tummy pains were much improved this week because for a good few days I either didn't get any pains or they were much more mild. However yesterday they were bad again, so I'll have to see how they go.
Today is my weight day and my weight was 52.1kg, so almost the same as it was last week. I've emailed my dietician from Hosp B to let her know and am waiting for a response.
I've been very nocturnal again this week. Starting watching a film at 12.30am one night probably wasn't my best idea though! :P And I've really struggled to get up some mornings. Waking up most morning between 9 and 9.30am isn't ideal especially if I didn't get to sleep til 3am, so when that happens I go back to sleep for another hour or so but then really struggle to get up when my alarm goes off at 10.30am.
Before my transplant I had really thick hair, but after my transplant it became really thin as a result of some of the medications I was on. Since then it got a bit thicker but has now gone very thin again :( I think I at least need the split ends trimming so am going to try to get an appt with my favourite hairdresser and ask her advice.
On Sun I received an email from someone from AYME saying that I am now the regional contact for my area :D I couldn't open the file I was emailed with the contact details of the AYMErs who live in my county, so that has been posted to me instead. When I receive that I'll write to them all to introduce myself and I think I might send them a simple questionnaire asking whether they'd like to be in touch with other AYMErs locally and what else I could do for them. I hope to organise a local meet-up at some point in the future, but I'll probably wait til I feel a bit better to do that.
Yesterday me and mum received an email from my nan's carers and they told us that she'd cancelled them because she said she didn't need them any more! She does need them, I think she's just worried about inconveniencing people. So we gave the carers dad's mobile number so they could ring him at work to talk to him about it. Dad told the carers to ring my nan and say that dad had said that she needed to keep the carers for now, but he'd ring later that day and discuss it with her. Dad phoned nan last night, but I'm not sure what the outcome of that was, hopefully he'll have managed to persuade her to keep the carers for now.
I've been out a few times since my last blog update. On Fri I went out with my mum to a local town to pick up a wheelchair from the Red Cross for my nan to borrow. We really struggled to find the Red Cross place in a local town but eventually found it down the end of a tiny road through a cemetery after phoning dad for directions. When we went in the man told us that the wheelchair had been delivered to my nan at home just half an hour earlier. Lack of communication there I think! Me and mum didn't feel like going straight home so we went into town to look round the shops. Mum found a fellow knitter while looking at yarn and despite having never met before they then proceeded to have a 15/20min conversation in the shop. I got bored so wandered off :P I picked up My Big Fat Greek Wedding on DVD from a charity shop for just £1.50 - bargain. I was looking for some slipper boots to replace my current ones which are falling apart, but none of the shoe shops had any in, they seem to have got rid of the winter stock now.
When we got back from the shops Alf was watching an anime film on TV so I asked him which one. He told me the title and I told him that it was made by Studio Ghibli. He checked and was really impressed that I knew that so I felt very smug. Then I turned round and walked straight into the door frame which ruined the effect. And it hurt a bit too. Alf of course found this hilarious!
And later that day I walked round to the post office. I'd been chatting to a sixth form friend, E, on Facebook chat and we'd decided to swap DS games. So I sent her New Super Mario Bros and she sent me Scribblenauts. So I went to the post office to post my game off to her. She got my game yesterday and I got Scribblenauts on Sat :)
Also in the post on Sat me and mum each got a very cute home-made card from M, Lizzy's daughter thanking us for the presents we'd given her last time we saw her :)
And on Fri eve Claire came round for tea and we played on New Super Mario Bros Wii together. We made loads of progress and were almost at a save point but then the Wii froze and we lost all the process we'd made that night! Grrr.
I didn't go out on Sat. But I seemed to have quite a productive day which included helping my dad sort my nan's laptop out and sorting through more old family photos with mum. We did more of that yesterday too and are making great progress with it. I really enjoy looking through old photos :)
On Sun it was the extended family meal to celebrate my uncle and his wife's 45th wedding anniversary. It was realised quite early on that Alf wouldn't be going, he'd gone out to a party the night before and so was very ill and hungover. What a muppet! I was very nervous about it and felt quite tired that morning, but decided to go for it. And it wasn't as bad as I expected. I actually quite enjoyed it :) There were 14 of us there in total, which sounds a lot but is less than I expected because my dad's side of the family is huge. There was me, my mum, my dad, my uncle (dad's older brother) and his wife (who's anniversary it was), their 2 sons and their wives (their daughter couldn't make it but did phone during the meal). One of their sons doesn't have any children, but the other had 3 who were there (and 2 older step children who weren't there) aged 9 (a boy), 11 and 15 (girls). Then there was also my dad's younger sister and my nan.
My uncle didn't mention my ME which was great (he was the one who was funny about it before). He did think I was under 16 though when it came to paying! And my nan looked happier than I've seen her in ages :) I was a bit sociable and everything went well. I even felt like I fitted in which I don't always do amongst my extended family. I managed to find some food that wasn't too spicy too. I did feel a bit odd though when talking to my 15 year old second cousin. She's 3 and a half years younger than me, but seems to have experienced more of being a teenager than I have if that makes sense. Things like her telling me and my nan about her favourite alcoholic drinks is just completely alien to me. I took quite a few photos on my phone which have come out really well, so I've emailed them to someone and printed out a copy to go on a thank you card to my uncle and his wife because the paid for all of us at the restaurant. And I'm going to email some photos to some of the family who weren't there and I'll print out the photos for my nan.
My dad was on call with work at the weekend and he had to go out on Sun night. I think the electricity had gone down at the hostel which caused serious problems because it meant that the tags of the residents who were tagged stopped working. My dad works with housing for the homeless in the city.
I didn't go out yesterday either, but Chris and Sophie came round which was nice :) I chatted to Chris which got me very excited because he'll get a new phone on his contract in Sept and is going to give me his current iPhone! :D Just need to work out if I can afford a contract with it! I think Chris said it costs him £35 a month for unlimited Internet access on it, which is quite a bit more than the £5 or so I currently spend on my phone a month! I should be able to manage it though now I've got granted ESA . Chris dropped his iPhone the other day and the screen has cracked. But rather than getting a new one with the insurance now he's happy to use it with a cracked screen until Aug and he'll get a new one then, so when he passes it on to me in Sept it'll be almost new :D
Someone from the Mika fan club is going to purchase one of my 3 Mika tickets once their Paypal account is verified. But that still left me with 2 to sell that no-one on the Mika fan club wanted. So yesterday evening Chris helped me put the pair of tickets on eBay. I put them up as Buy It Now and someone bought them within 4 hours! ThePaypal payment has already gone through, so I'll post the tickets off later today :)
And yesterday we got a new TV delivered. Dad chooses to rent the family TV and we did have a 27 inch box shaped one. But then dad discovered that he was being vastly overcharged for that so complained. And we now can keep paying the same amount but can rent a 32 inchflatscreen TV that has built in Freeview and is HD ready. It's much nicer than our old TV. It doesn't seem much bigger but has a better picture. It makes the TV in my bedroom seem even smaller though! :P I've worked out how to use it, but dad hasn't sorted out the surround sound speakers yet, so needs to do that soon so we can get better sound from it.
On TV since my last update I've watched the music channels, The Review Show (just the end part because Marina and the Diamonds performed), the first 2 parts of Syrian School, Tracy Beaker Returns, the last episode in the series of Nurse Jackie (I'm really going to miss it until the BBC televise series 2 later in the year) Film 2010 and the BAFTAs. If you missed it but are interested you can read more here or find the list of all the winners here. I was disappointed that Precious only won one award and that Up In The Air won an award! I was pleasantly surprised that The Young Victoria won 2 awards and I was happy that Up also won 2 awards, though I would have preferred Coraline to win animation.
Since my last updated I've watched a few DVDs. I rewatched Up which I love :D Pixar are great :) If you've not seen Up I'd highly recommend it for both children and adults. I watched The History Boys with my parents and although it wasn't a bad film, it just wasn't my kind of film and I got a bit bored at some points in it! :P Another new film I've watched is Ghost, which was very good.Whoopi Goldberg was great in it :D And I started rewatching Charlie and the Chocolate Factory but got interrupted so haven't rewatched much of it yet.
As I said earlier in my update, I've made more progress on New Super Mario Bros Wii and have also played more of Picross DS and have started playing Scribblenauts on my DSi too :) And Alf borrowed my other new DS game (Ace Attorney: Phoenix Wright) before I had chance to play it. He really enjoyed that though, so now he's finished with it I'm looking forward to giving it a try.
I can't read much at the moment but did flick through the latest Which magazine when mum brought it back from the library. I couldn't believe that the hard disc recorder that the rated the highest is a newer model of ours, that has completed wiped itself of all recorded programmes on a few occasions! I wouldn't buy from that manufacturer (Humax) again! And our broadband provider (Orange) came second to bottom in their ratings, but we've not had many problems with them.
Despite Marina and the Diamonds' debut album, The Family Jewels, not being released til yesterday, I preorded it from Amazon and it arrived on Fri! I wasn't too impressed with the case being cracked though, but luckily I had a spare CD case to put it into and the CD wasn't damaged. The day before that I'd been listening to it online here, but it was great to get a copy of the CD. I think since Thur I must have listened to it about 10 times, I love every song on it and can't get enough of it at the moment :D And it's currently the second best selling album on iTunes :) The top selling album is the Glee album though and I doubt it'll outsell that! It was interesting reading reviews of The Family Jewels online, the reviews either loved or hated it, there were no neutral reviews. I think she must be a bit like Mika, people either love or hate her music!
This week Ellie Goulding's latest single, Starry Eyed, has also been released this week. I've bought it. It's currently the 3rd best selling single on iTunes :) I'm looking forward to her debut album next week but am not sure whether to preorder it or whether to wait for it on Spotify. Ellie Goulding was on Radio 1's Live Lounge this morning and you should be able to listen to it here shortly.
I've also listened to the Noisettes album, Wild Young Hearts, a few times in preparation for the concert tonight! I'm not particularly excited about it, probably because I just like their music rather than love it and I'm more excited about Sun, but it should be good. And because it's only in the local city it shouldn't be too tiring :) I was worried when we had snow yesterday morning, but luckily it all seems to have melted now so it shouldn't disrupt our plans.
And as I'm writing this I'm listening to The Boy Who Knew Too Much by Mika. I'm soooooooooo excited about seeing him in concert for the 3rd time on Sun, yay! :D :D :D I've just emailed my friend H (who I'm going to the concert with as well as my mum) to share my excitement :D
Also this week Claire is coming round on Fri eve and then me and mum might be going to her house on Sat (depending how I feel) to meet her parents for the first time.
On Fri I heard from Liver Direct and because my Tac level was high again they wanted me to lower the dose. I need all my bloods repeating soon, either this week or next week I'm not sure exactly when because I haven't received the bloods letter yet. If the rest of my bloods are ok then they can go back to 3 monthly, so fingers crossed. My Tac level might need checking via a fingerprick more regularly though until it stabilises around my target level.
On Fri my dietician also got back to me and confirmed that the clinic at Hosp A on 10th March will be a joint clinic with both of my consultants. I've already started a list of things I want to talk to them about! :P
And on Fri I checked my bank account online and saw that my backdated ESA had gone in :D I I also heard that my friend Rosie has been granted ESA without requiring a medical assessment, yay! :D On Sat I received a letter in the post confirming the date change of my next Pathways to Work interview. That morning I also received a letter asking me if I'd like to trial some new illeostomy supplies! I think a company must still have me on their mailing list despite me having my illeostomy reversed over 18 months ago, lol.
On Sat I heard that my friend Holly C's Give and Let Live Books were ready so I ordered one :) You can find out more here.
I thought my tummy pains were much improved this week because for a good few days I either didn't get any pains or they were much more mild. However yesterday they were bad again, so I'll have to see how they go.
Today is my weight day and my weight was 52.1kg, so almost the same as it was last week. I've emailed my dietician from Hosp B to let her know and am waiting for a response.
I've been very nocturnal again this week. Starting watching a film at 12.30am one night probably wasn't my best idea though! :P And I've really struggled to get up some mornings. Waking up most morning between 9 and 9.30am isn't ideal especially if I didn't get to sleep til 3am, so when that happens I go back to sleep for another hour or so but then really struggle to get up when my alarm goes off at 10.30am.
Before my transplant I had really thick hair, but after my transplant it became really thin as a result of some of the medications I was on. Since then it got a bit thicker but has now gone very thin again :( I think I at least need the split ends trimming so am going to try to get an appt with my favourite hairdresser and ask her advice.
On Sun I received an email from someone from AYME saying that I am now the regional contact for my area :D I couldn't open the file I was emailed with the contact details of the AYMErs who live in my county, so that has been posted to me instead. When I receive that I'll write to them all to introduce myself and I think I might send them a simple questionnaire asking whether they'd like to be in touch with other AYMErs locally and what else I could do for them. I hope to organise a local meet-up at some point in the future, but I'll probably wait til I feel a bit better to do that.
Yesterday me and mum received an email from my nan's carers and they told us that she'd cancelled them because she said she didn't need them any more! She does need them, I think she's just worried about inconveniencing people. So we gave the carers dad's mobile number so they could ring him at work to talk to him about it. Dad told the carers to ring my nan and say that dad had said that she needed to keep the carers for now, but he'd ring later that day and discuss it with her. Dad phoned nan last night, but I'm not sure what the outcome of that was, hopefully he'll have managed to persuade her to keep the carers for now.
I've been out a few times since my last blog update. On Fri I went out with my mum to a local town to pick up a wheelchair from the Red Cross for my nan to borrow. We really struggled to find the Red Cross place in a local town but eventually found it down the end of a tiny road through a cemetery after phoning dad for directions. When we went in the man told us that the wheelchair had been delivered to my nan at home just half an hour earlier. Lack of communication there I think! Me and mum didn't feel like going straight home so we went into town to look round the shops. Mum found a fellow knitter while looking at yarn and despite having never met before they then proceeded to have a 15/20min conversation in the shop. I got bored so wandered off :P I picked up My Big Fat Greek Wedding on DVD from a charity shop for just £1.50 - bargain. I was looking for some slipper boots to replace my current ones which are falling apart, but none of the shoe shops had any in, they seem to have got rid of the winter stock now.
When we got back from the shops Alf was watching an anime film on TV so I asked him which one. He told me the title and I told him that it was made by Studio Ghibli. He checked and was really impressed that I knew that so I felt very smug. Then I turned round and walked straight into the door frame which ruined the effect. And it hurt a bit too. Alf of course found this hilarious!
And later that day I walked round to the post office. I'd been chatting to a sixth form friend, E, on Facebook chat and we'd decided to swap DS games. So I sent her New Super Mario Bros and she sent me Scribblenauts. So I went to the post office to post my game off to her. She got my game yesterday and I got Scribblenauts on Sat :)
Also in the post on Sat me and mum each got a very cute home-made card from M, Lizzy's daughter thanking us for the presents we'd given her last time we saw her :)
And on Fri eve Claire came round for tea and we played on New Super Mario Bros Wii together. We made loads of progress and were almost at a save point but then the Wii froze and we lost all the process we'd made that night! Grrr.
I didn't go out on Sat. But I seemed to have quite a productive day which included helping my dad sort my nan's laptop out and sorting through more old family photos with mum. We did more of that yesterday too and are making great progress with it. I really enjoy looking through old photos :)
On Sun it was the extended family meal to celebrate my uncle and his wife's 45th wedding anniversary. It was realised quite early on that Alf wouldn't be going, he'd gone out to a party the night before and so was very ill and hungover. What a muppet! I was very nervous about it and felt quite tired that morning, but decided to go for it. And it wasn't as bad as I expected. I actually quite enjoyed it :) There were 14 of us there in total, which sounds a lot but is less than I expected because my dad's side of the family is huge. There was me, my mum, my dad, my uncle (dad's older brother) and his wife (who's anniversary it was), their 2 sons and their wives (their daughter couldn't make it but did phone during the meal). One of their sons doesn't have any children, but the other had 3 who were there (and 2 older step children who weren't there) aged 9 (a boy), 11 and 15 (girls). Then there was also my dad's younger sister and my nan.
My uncle didn't mention my ME which was great (he was the one who was funny about it before). He did think I was under 16 though when it came to paying! And my nan looked happier than I've seen her in ages :) I was a bit sociable and everything went well. I even felt like I fitted in which I don't always do amongst my extended family. I managed to find some food that wasn't too spicy too. I did feel a bit odd though when talking to my 15 year old second cousin. She's 3 and a half years younger than me, but seems to have experienced more of being a teenager than I have if that makes sense. Things like her telling me and my nan about her favourite alcoholic drinks is just completely alien to me. I took quite a few photos on my phone which have come out really well, so I've emailed them to someone and printed out a copy to go on a thank you card to my uncle and his wife because the paid for all of us at the restaurant. And I'm going to email some photos to some of the family who weren't there and I'll print out the photos for my nan.
My dad was on call with work at the weekend and he had to go out on Sun night. I think the electricity had gone down at the hostel which caused serious problems because it meant that the tags of the residents who were tagged stopped working. My dad works with housing for the homeless in the city.
I didn't go out yesterday either, but Chris and Sophie came round which was nice :) I chatted to Chris which got me very excited because he'll get a new phone on his contract in Sept and is going to give me his current iPhone! :D Just need to work out if I can afford a contract with it! I think Chris said it costs him £35 a month for unlimited Internet access on it, which is quite a bit more than the £5 or so I currently spend on my phone a month! I should be able to manage it though now I've got granted ESA . Chris dropped his iPhone the other day and the screen has cracked. But rather than getting a new one with the insurance now he's happy to use it with a cracked screen until Aug and he'll get a new one then, so when he passes it on to me in Sept it'll be almost new :D
Someone from the Mika fan club is going to purchase one of my 3 Mika tickets once their Paypal account is verified. But that still left me with 2 to sell that no-one on the Mika fan club wanted. So yesterday evening Chris helped me put the pair of tickets on eBay. I put them up as Buy It Now and someone bought them within 4 hours! ThePaypal payment has already gone through, so I'll post the tickets off later today :)
And yesterday we got a new TV delivered. Dad chooses to rent the family TV and we did have a 27 inch box shaped one. But then dad discovered that he was being vastly overcharged for that so complained. And we now can keep paying the same amount but can rent a 32 inchflatscreen TV that has built in Freeview and is HD ready. It's much nicer than our old TV. It doesn't seem much bigger but has a better picture. It makes the TV in my bedroom seem even smaller though! :P I've worked out how to use it, but dad hasn't sorted out the surround sound speakers yet, so needs to do that soon so we can get better sound from it.
On TV since my last update I've watched the music channels, The Review Show (just the end part because Marina and the Diamonds performed), the first 2 parts of Syrian School, Tracy Beaker Returns, the last episode in the series of Nurse Jackie (I'm really going to miss it until the BBC televise series 2 later in the year) Film 2010 and the BAFTAs. If you missed it but are interested you can read more here or find the list of all the winners here. I was disappointed that Precious only won one award and that Up In The Air won an award! I was pleasantly surprised that The Young Victoria won 2 awards and I was happy that Up also won 2 awards, though I would have preferred Coraline to win animation.
Since my last updated I've watched a few DVDs. I rewatched Up which I love :D Pixar are great :) If you've not seen Up I'd highly recommend it for both children and adults. I watched The History Boys with my parents and although it wasn't a bad film, it just wasn't my kind of film and I got a bit bored at some points in it! :P Another new film I've watched is Ghost, which was very good.Whoopi Goldberg was great in it :D And I started rewatching Charlie and the Chocolate Factory but got interrupted so haven't rewatched much of it yet.
As I said earlier in my update, I've made more progress on New Super Mario Bros Wii and have also played more of Picross DS and have started playing Scribblenauts on my DSi too :) And Alf borrowed my other new DS game (Ace Attorney: Phoenix Wright) before I had chance to play it. He really enjoyed that though, so now he's finished with it I'm looking forward to giving it a try.
I can't read much at the moment but did flick through the latest Which magazine when mum brought it back from the library. I couldn't believe that the hard disc recorder that the rated the highest is a newer model of ours, that has completed wiped itself of all recorded programmes on a few occasions! I wouldn't buy from that manufacturer (Humax) again! And our broadband provider (Orange) came second to bottom in their ratings, but we've not had many problems with them.
Despite Marina and the Diamonds' debut album, The Family Jewels, not being released til yesterday, I preorded it from Amazon and it arrived on Fri! I wasn't too impressed with the case being cracked though, but luckily I had a spare CD case to put it into and the CD wasn't damaged. The day before that I'd been listening to it online here, but it was great to get a copy of the CD. I think since Thur I must have listened to it about 10 times, I love every song on it and can't get enough of it at the moment :D And it's currently the second best selling album on iTunes :) The top selling album is the Glee album though and I doubt it'll outsell that! It was interesting reading reviews of The Family Jewels online, the reviews either loved or hated it, there were no neutral reviews. I think she must be a bit like Mika, people either love or hate her music!
This week Ellie Goulding's latest single, Starry Eyed, has also been released this week. I've bought it. It's currently the 3rd best selling single on iTunes :) I'm looking forward to her debut album next week but am not sure whether to preorder it or whether to wait for it on Spotify. Ellie Goulding was on Radio 1's Live Lounge this morning and you should be able to listen to it here shortly.
I've also listened to the Noisettes album, Wild Young Hearts, a few times in preparation for the concert tonight! I'm not particularly excited about it, probably because I just like their music rather than love it and I'm more excited about Sun, but it should be good. And because it's only in the local city it shouldn't be too tiring :) I was worried when we had snow yesterday morning, but luckily it all seems to have melted now so it shouldn't disrupt our plans.
And as I'm writing this I'm listening to The Boy Who Knew Too Much by Mika. I'm soooooooooo excited about seeing him in concert for the 3rd time on Sun, yay! :D :D :D I've just emailed my friend H (who I'm going to the concert with as well as my mum) to share my excitement :D
Also this week Claire is coming round on Fri eve and then me and mum might be going to her house on Sat (depending how I feel) to meet her parents for the first time.
Wednesday, 17 February 2010
Long overdue update - part 4
This is the final part of my big update and covers everything that I didn't cover in the previous 3 updates. If you missed them you can read part 1 here, part 2 here and part 3 here.
I just wanted to mention that Becky who often reads and comments on my blog is on a school trip in the USA. I hope she's having an amazing time and I can't wait to see her photos when she returns :) On Facebook chat earlier in the week I spoke to Catherine and it was great to catch up with her. And very oddly this week I've had a friend request on Facebook from my best friend from primary school, who I've not spoken to in years! I'm not sure I'm ready to accept her as a friend and let her see all my profile and photos etc, but I've been talking to her via email for now. And on Facebook I was shocked by my cousin J's latest status update, which said that she was very happy because her little boy (who is 3 or 4) is going to start XXX College P
rep in September! He's only little! I heard a little while ago that a friend, R, from AYME had been admitted to hospital. I hope she soon feels a lot better and I've been keeping in touch with her via text for now. A great positive I've heard this week is that M (the little girl from Hosp B who was seriously ill with severe rejection just before Christmas) got home a couple of days ago! :D
Last Wed would have been Will's 17th birthday. His dream was always to be able to drive a car, as he loved cars. He would have been able to achieve his dream last Wed if he was still here. It's so sad that he's not :( I keep in touch with his mum.
I'm not sure how much I've mentioned my dad's swimming before. When me and Alf were little mum used to take us swimming a lot and dad would never come along. He always hated swimming. Just after Christmas he started improver swimming lessons at a local swimming pool once a week because he wanted to get a bit fitter. He used to go to the gym but had to stop due to problems with his achilles tendon. Dad could swim, but these helped him improve his technique. He began to love swimming and started to go more and more each week. Now he's going 5/6 days a week! It was costing him a lot in petrol travelling to the local pools (though he did swim for free because he's over 60 now), so has just joined a local members' only swimming pool which is much closer. Although the membership fees are high it works out about the same price as all the petrol was costing him. And with that and eating less he's lost loads of weight and is feeling loads fitter :)
In the post last week I received a lovely letter from Catherine and a knitted reminder of Japan, which looks just like one of the sweets we made when we were there :) I said in my last blog update that mum was knitting me a monkey. He's now finished, what do you think?
And this is a photo of my monkey with another monkey that mum has knitted for Alf for his birthday:
I've shared these photos on Twitter, Facebook and AYME and everyone who has seen them has been very impressed. Lots of people have suggested that mum should enter The K Factor on Harry Hill, so I think she is considering that :)
I've recently bought part of Rosie's birthday present, even though her birthday isn't til May. I feel very organised! :D I can't say any more here though because I know she'll be reading :) And recently the Dr Who books I ordered from the Radio Times arrived in the post. One for me and one for Claire for her birthday in April. I think I'm a bit disappointed as they're not as readable as I expected, but hopefully Claire will like her copy. And I've been thinking about Alf's birthday which is coming up on March 3rd. I've decided that I'm going to give him an IOU for an iPod charger of his own as he currently has to keep borrowing mine. And I now have to make him use it in my bedroom because otherwise he forgets to give it back and then I don't know where it is when I need it, boys! I've had a look at iPod chargers on the Internet but they look so confusing as apparently different ones work with different models of iPods, so an IOU means that Alf chooses it (so it's not my fault if it doesn't work with his iPod!), but I'll pay for it for him.
This week I have read the entire latest issue of the Official Nintendo Magazine, which I subscribe to. I cancelled my subscription to Focus but am currently still receiving magazines as the last payment I paid via direct debit before I cancelled the subscription was one for 3 months. So I've looked at a couple of bits in the latest issue of that. And one of my 3 issues of the Lonely Planet magazine for just £1 came in the post, so I'll see what of that I can read.
I've bought a new game for my Wii called A Boy And His Blob. I've only played on it once so far, but I like it. The animation is fantastic, everything is handrawn and it looks lovely. The controls aren't properly explained though, so that took a little while to get the hang of. I've played on New Super Mario Bros Wii a lot, both with Claire and on my own. I've made quite a lot of progress on it this week though, getting from World 3 to World 6 (there are 8 worlds in total). I went on Mario Kart Wii briefly to add the codes of some of my friends from AYME and then I had a race against some of them online which was good fun, but very tiring!
On my DSi I've played one of my new games, Picross DS, quite a lot as it's a very good puzzle game and is quite addictive :P I've not tried my other new game yet.
I've recently listened to music from Little Boots, The Noisettes and Marina and the Diamonds. I've also found some good Marina and the Diamonds Youtube videos, including a preview of her upcoming album, which I'm very excited about, which you can hear here. And I found some photos of the Taylor Swift concert which I went to back in Nov here.
My spare standing tickets for the Mika concert on the 28th arrived in the post just over a week ago and I'm now trying to sell them. I advertised them on the Mika fan club website, but have only found a potential buyer for one of the three tickets so far. Hopefully I'll find someone who wants them soon. I can't wait til the concert :D Unfortunately though it has recently been announced that Erik Hassle will be Mika's support act. I saw him supporting Little Boots and wasn't very impressed. I found this video online which goes behind the scenes of a Mika concert. I don't know if it was a one off concert though or part of the tour I'm going to see. But it was interesting to watch anyway :)
On TV I watched Marina and the Diamonds performing on Jonathan Ross and Mika performing on Alan Carr Chatty Man. His latest single, Blame It On The Girls, is out now. I hope it charts well on Sun but I have a feeling that it won't. I've just looked at the iTunes chart and it's currently 130, so it's not going to chart on Sun :( And I saw this Mika programme on Channel 4, which me and mum really enjoyed watching :) I also watched some of a concert on 4 Music (I think it was raising awareness of and money for cervical cancer) and liked Pixie Lott's performance. I was disappointed when she announced that before she does her own tour later in the year, she'll be supporting Rihanna on tour first. I hope it's not too long til she tours on her own as I'd love to see her live, but have no interest in seeing Rihanna in concert. You can see Pixie Lott's new video for Gravity here. And I also saw her performing on Cry Me Out and a cover of the Kings of Leon's Use Somebody on Dancing on Ice. Also on the 4 Music concert was La Roux performing Bulletproof. Mum looked at me really puzzled and said "pudding proof?". Hehe :P A couple of years ago I really liked a young Australian singer called Gabriella Cilmi (you might have heard her most famous track - Sweet About Me) and had her album. I liked her because she didn't seem the same as everyone else. I've just seen her new video and think both it and the song are horrible! I've watched quite a bit on the music channels and me and mum enjoyed watching a chart featuring the best selling single from each of the last 30 years. There were some great 80s songs including Madness, Dexy's Midnight Runners, Culture Club and we loved seeing old Spice Girls videos from the 90s :D
Before I watched the Brits tonight I found this round up of all the nominees on the BBC website and some of the 'We say' parts made me laugh. I enjoyed watching the Brits, but thought some parts weren't so good. There were lots of mess ups and the audio muting got annoying as it was cutting out parts of speeches. Peter Kay was a great host though :D
Lily Allen's opening performance was disappointing, although her vocals were strong I thought it just looked a bit of a mess. I didn't get Lady Gaga's performance and think she would have been better doing a song that people would know. And Cheryl Cole's miming was atrocious! I don't like Jay-Z, but I thought Alicia Keys proved that she had a very powerful voice when they performed Empire State of Mind together. I didn't like Dizzee Rascal and Florence's duet, but I don't like either of them usually when they're alone, so wasn't surprised that I didn't like their collaboration.
I wasn't very impressed by most of the winners - Mika didn't win the award he was nominated for (British Male Solo Artist), Taylor Swift didn't win the award she was nominated for (International Breakthrough Act) and Pixie Lott didn't win any of the 3 awards she was nominated for (British Female Solo Artist, British Breakthrough Act and British Single). But I was very happy that Lily Allen won one of the 3 awards she was nominated for - British Female Solo Artist :D And I'm not a Lady Gaga fan, so wasn't very impressed when she won all the 3 awards she was nominated for (International Breakthrough Act - where she beat Taylor Swift, International Album and International Female Solo Artist) although I did expect it. Oasis winning Brits Album of 30 years was also predictable, but the Gallagher chucking the award into the crowd wasn't! JLS winning British Breakthrough Act and British Single were also predictable. I don't understand how Dizzee Rascal won British Male Solo Artist, Jay-Z won International Male Solo Artist and Kasabian won British Group - I can't stand any of them! I'm also not a Florence and the Machine fan and would have preferred Lily Allen to win British Album rather than her. Never mind though. I was happy that Ellie Goulding won the Critic's Choice award as I think she's great and I loved that the award for the best performance of the last 30 years went to the Spice Girls :D
I'm not sure how Robbie Williams won the Outstanding Contribution to Music award. I thought that award should go to someone who had influenced the music industry or made a difference to it somehow, but now I suspect that it is just who makes the most money for the music industry. He is a good performer though and I liked watching his medley. It looked like he was miming, but apparently he was performing live but it was just out of sync. I don't know.
Despite all my moaning I did actually enjoy watching the Brits! :P
Also on TV since my last update I've watched Ready Steady Cook (because it had the actress Joanna Page - who plays Stacey in Gavin and Stacey on it), 2 episodes of Nurse Jackie, 2 episodes of Film 2010, Horizon: Don't Grow Old, 2 episodes of One Born Every Minute on C4, I Hate My Mum (part of the BBC Being Mum Season), Leaving home at 8 (a documentary about young children going to boarding school) and a BBC documentary called Having A Baby To Save My Child about families trying to have another child via IVF to provide a bone marrow transplant for a child they already had who needed one. It was interesting, but I thought the programme was quite unbalanced. It was all about the positives. The negative aspects of having a child to be a bone marrow donor for a sibling weren't even mentioned.
I've not watched much on DVD since my last update. I've watched some of Notting Hill though, which I enjoyed. I need to finish it though :P Claire thought that I might like a TV programme called Coupling (which apparently is like an English version of Friends, but better) so I've rented that but have only watched the first episode so far. Me and mum weren't sure what we thought so are going to give the second episode a try when we get chance. And the other rental DVD I was sent from Tesco was Club 7 - Party Live, so I watched that too. My latest DVD rental is Pixar's Up which I saw in the cinema last year, so I'm looking forward to rewatching that.
As I said in part 2 of my big update, I was planning to go to the cinema today. I pulled a tendon or something in my shoulder though (which may or may not have been due to playing on the Wii yesterday evening) which was very painful this afternoon so we decided not to go. My shoulder is feeling much better now though and me and mum are hoping to get to the cinema to see Valentine's Day another day this week, maybe tomorrow (Tue) :)
I just wanted to mention that Becky who often reads and comments on my blog is on a school trip in the USA. I hope she's having an amazing time and I can't wait to see her photos when she returns :) On Facebook chat earlier in the week I spoke to Catherine and it was great to catch up with her. And very oddly this week I've had a friend request on Facebook from my best friend from primary school, who I've not spoken to in years! I'm not sure I'm ready to accept her as a friend and let her see all my profile and photos etc, but I've been talking to her via email for now. And on Facebook I was shocked by my cousin J's latest status update, which said that she was very happy because her little boy (who is 3 or 4) is going to start XXX College P
rep in September! He's only little! I heard a little while ago that a friend, R, from AYME had been admitted to hospital. I hope she soon feels a lot better and I've been keeping in touch with her via text for now. A great positive I've heard this week is that M (the little girl from Hosp B who was seriously ill with severe rejection just before Christmas) got home a couple of days ago! :D
Last Wed would have been Will's 17th birthday. His dream was always to be able to drive a car, as he loved cars. He would have been able to achieve his dream last Wed if he was still here. It's so sad that he's not :( I keep in touch with his mum.
I'm not sure how much I've mentioned my dad's swimming before. When me and Alf were little mum used to take us swimming a lot and dad would never come along. He always hated swimming. Just after Christmas he started improver swimming lessons at a local swimming pool once a week because he wanted to get a bit fitter. He used to go to the gym but had to stop due to problems with his achilles tendon. Dad could swim, but these helped him improve his technique. He began to love swimming and started to go more and more each week. Now he's going 5/6 days a week! It was costing him a lot in petrol travelling to the local pools (though he did swim for free because he's over 60 now), so has just joined a local members' only swimming pool which is much closer. Although the membership fees are high it works out about the same price as all the petrol was costing him. And with that and eating less he's lost loads of weight and is feeling loads fitter :)
In the post last week I received a lovely letter from Catherine and a knitted reminder of Japan, which looks just like one of the sweets we made when we were there :) I said in my last blog update that mum was knitting me a monkey. He's now finished, what do you think?
And this is a photo of my monkey with another monkey that mum has knitted for Alf for his birthday:
I've shared these photos on Twitter, Facebook and AYME and everyone who has seen them has been very impressed. Lots of people have suggested that mum should enter The K Factor on Harry Hill, so I think she is considering that :)
I've recently bought part of Rosie's birthday present, even though her birthday isn't til May. I feel very organised! :D I can't say any more here though because I know she'll be reading :) And recently the Dr Who books I ordered from the Radio Times arrived in the post. One for me and one for Claire for her birthday in April. I think I'm a bit disappointed as they're not as readable as I expected, but hopefully Claire will like her copy. And I've been thinking about Alf's birthday which is coming up on March 3rd. I've decided that I'm going to give him an IOU for an iPod charger of his own as he currently has to keep borrowing mine. And I now have to make him use it in my bedroom because otherwise he forgets to give it back and then I don't know where it is when I need it, boys! I've had a look at iPod chargers on the Internet but they look so confusing as apparently different ones work with different models of iPods, so an IOU means that Alf chooses it (so it's not my fault if it doesn't work with his iPod!), but I'll pay for it for him.
This week I have read the entire latest issue of the Official Nintendo Magazine, which I subscribe to. I cancelled my subscription to Focus but am currently still receiving magazines as the last payment I paid via direct debit before I cancelled the subscription was one for 3 months. So I've looked at a couple of bits in the latest issue of that. And one of my 3 issues of the Lonely Planet magazine for just £1 came in the post, so I'll see what of that I can read.
I've bought a new game for my Wii called A Boy And His Blob. I've only played on it once so far, but I like it. The animation is fantastic, everything is handrawn and it looks lovely. The controls aren't properly explained though, so that took a little while to get the hang of. I've played on New Super Mario Bros Wii a lot, both with Claire and on my own. I've made quite a lot of progress on it this week though, getting from World 3 to World 6 (there are 8 worlds in total). I went on Mario Kart Wii briefly to add the codes of some of my friends from AYME and then I had a race against some of them online which was good fun, but very tiring!
On my DSi I've played one of my new games, Picross DS, quite a lot as it's a very good puzzle game and is quite addictive :P I've not tried my other new game yet.
I've recently listened to music from Little Boots, The Noisettes and Marina and the Diamonds. I've also found some good Marina and the Diamonds Youtube videos, including a preview of her upcoming album, which I'm very excited about, which you can hear here. And I found some photos of the Taylor Swift concert which I went to back in Nov here.
My spare standing tickets for the Mika concert on the 28th arrived in the post just over a week ago and I'm now trying to sell them. I advertised them on the Mika fan club website, but have only found a potential buyer for one of the three tickets so far. Hopefully I'll find someone who wants them soon. I can't wait til the concert :D Unfortunately though it has recently been announced that Erik Hassle will be Mika's support act. I saw him supporting Little Boots and wasn't very impressed. I found this video online which goes behind the scenes of a Mika concert. I don't know if it was a one off concert though or part of the tour I'm going to see. But it was interesting to watch anyway :)
On TV I watched Marina and the Diamonds performing on Jonathan Ross and Mika performing on Alan Carr Chatty Man. His latest single, Blame It On The Girls, is out now. I hope it charts well on Sun but I have a feeling that it won't. I've just looked at the iTunes chart and it's currently 130, so it's not going to chart on Sun :( And I saw this Mika programme on Channel 4, which me and mum really enjoyed watching :) I also watched some of a concert on 4 Music (I think it was raising awareness of and money for cervical cancer) and liked Pixie Lott's performance. I was disappointed when she announced that before she does her own tour later in the year, she'll be supporting Rihanna on tour first. I hope it's not too long til she tours on her own as I'd love to see her live, but have no interest in seeing Rihanna in concert. You can see Pixie Lott's new video for Gravity here. And I also saw her performing on Cry Me Out and a cover of the Kings of Leon's Use Somebody on Dancing on Ice. Also on the 4 Music concert was La Roux performing Bulletproof. Mum looked at me really puzzled and said "pudding proof?". Hehe :P A couple of years ago I really liked a young Australian singer called Gabriella Cilmi (you might have heard her most famous track - Sweet About Me) and had her album. I liked her because she didn't seem the same as everyone else. I've just seen her new video and think both it and the song are horrible! I've watched quite a bit on the music channels and me and mum enjoyed watching a chart featuring the best selling single from each of the last 30 years. There were some great 80s songs including Madness, Dexy's Midnight Runners, Culture Club and we loved seeing old Spice Girls videos from the 90s :D
Before I watched the Brits tonight I found this round up of all the nominees on the BBC website and some of the 'We say' parts made me laugh. I enjoyed watching the Brits, but thought some parts weren't so good. There were lots of mess ups and the audio muting got annoying as it was cutting out parts of speeches. Peter Kay was a great host though :D
Lily Allen's opening performance was disappointing, although her vocals were strong I thought it just looked a bit of a mess. I didn't get Lady Gaga's performance and think she would have been better doing a song that people would know. And Cheryl Cole's miming was atrocious! I don't like Jay-Z, but I thought Alicia Keys proved that she had a very powerful voice when they performed Empire State of Mind together. I didn't like Dizzee Rascal and Florence's duet, but I don't like either of them usually when they're alone, so wasn't surprised that I didn't like their collaboration.
I wasn't very impressed by most of the winners - Mika didn't win the award he was nominated for (British Male Solo Artist), Taylor Swift didn't win the award she was nominated for (International Breakthrough Act) and Pixie Lott didn't win any of the 3 awards she was nominated for (British Female Solo Artist, British Breakthrough Act and British Single). But I was very happy that Lily Allen won one of the 3 awards she was nominated for - British Female Solo Artist :D And I'm not a Lady Gaga fan, so wasn't very impressed when she won all the 3 awards she was nominated for (International Breakthrough Act - where she beat Taylor Swift, International Album and International Female Solo Artist) although I did expect it. Oasis winning Brits Album of 30 years was also predictable, but the Gallagher chucking the award into the crowd wasn't! JLS winning British Breakthrough Act and British Single were also predictable. I don't understand how Dizzee Rascal won British Male Solo Artist, Jay-Z won International Male Solo Artist and Kasabian won British Group - I can't stand any of them! I'm also not a Florence and the Machine fan and would have preferred Lily Allen to win British Album rather than her. Never mind though. I was happy that Ellie Goulding won the Critic's Choice award as I think she's great and I loved that the award for the best performance of the last 30 years went to the Spice Girls :D
I'm not sure how Robbie Williams won the Outstanding Contribution to Music award. I thought that award should go to someone who had influenced the music industry or made a difference to it somehow, but now I suspect that it is just who makes the most money for the music industry. He is a good performer though and I liked watching his medley. It looked like he was miming, but apparently he was performing live but it was just out of sync. I don't know.
Despite all my moaning I did actually enjoy watching the Brits! :P
Also on TV since my last update I've watched Ready Steady Cook (because it had the actress Joanna Page - who plays Stacey in Gavin and Stacey on it), 2 episodes of Nurse Jackie, 2 episodes of Film 2010, Horizon: Don't Grow Old, 2 episodes of One Born Every Minute on C4, I Hate My Mum (part of the BBC Being Mum Season), Leaving home at 8 (a documentary about young children going to boarding school) and a BBC documentary called Having A Baby To Save My Child about families trying to have another child via IVF to provide a bone marrow transplant for a child they already had who needed one. It was interesting, but I thought the programme was quite unbalanced. It was all about the positives. The negative aspects of having a child to be a bone marrow donor for a sibling weren't even mentioned.
I've not watched much on DVD since my last update. I've watched some of Notting Hill though, which I enjoyed. I need to finish it though :P Claire thought that I might like a TV programme called Coupling (which apparently is like an English version of Friends, but better) so I've rented that but have only watched the first episode so far. Me and mum weren't sure what we thought so are going to give the second episode a try when we get chance. And the other rental DVD I was sent from Tesco was Club 7 - Party Live, so I watched that too. My latest DVD rental is Pixar's Up which I saw in the cinema last year, so I'm looking forward to rewatching that.
As I said in part 2 of my big update, I was planning to go to the cinema today. I pulled a tendon or something in my shoulder though (which may or may not have been due to playing on the Wii yesterday evening) which was very painful this afternoon so we decided not to go. My shoulder is feeling much better now though and me and mum are hoping to get to the cinema to see Valentine's Day another day this week, maybe tomorrow (Tue) :)
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.
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