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 concentration. Show all posts
Showing posts with label concentration. Show all posts
Monday, 11 October 2010
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.
Friday, 19 February 2010
Food, films, clinic and town
Thanks to everyone who read my last huge update. I'm really trying to update my blog more regularly now so I wont end up having to split one huge update up into many posts again.
On Tue night I was very nocturnal again, but last night I went to bed at about midnight. And you can probably tell by the time of this update that I'm nocturnal again tonight. So my getting into bed by midnight is not working at the moment :P
Yesterday my shoulder was loads better and has continued to improve though it's still a bit achy and stiff. I was very tired yesterday but haven't felt too bad today, which might have been related to getting to bed at a more sensible time last night.
After I wrote my last update on Tue I heard back from my dietician at Hosp B in response to the email I sent her with my weight that morning. She was very impressed and her reply included lots of exclamation marks :) That day I tried pancakes for Pancake Day and didn't like them at all because they were all rubbery! Today I was also a bit adventurous with my eating, I don't usually like trying new foods. I had a chicken and stuffing sandwich for lunch, which wasn't too bad and tried an anchovy in the evening - yuk! I've got a bit fed up of food and eating today though. Since I came off overnight feeds I've also been making a real effort with my drinking and am now drinking about a litre a day. It's probably still not quite enough, but it's much better than what I had been drinking. And I keep swallowing my elastics from my braces when I'm eating, whoops! :P
This morning I received a letter from Hosp A for a clinic appt with my consultant there (Dr W) for 10th March. When I last saw him last July he said he'd see me again in 3 months, March will be 8 months! This transition isn't going very well :P I emailed my dietician this evening to see if she knew whether this was a joint clinic (where the team from Hosp B are there too) because I'd heard there was one coming up, or just a Hosp A clinic. She said she thinks that there's a joint clinic on 24th March so suggests that I try phoning Dr W's secretary tomorrow to find out what's happening as there's no point me seeing him twice in one month! My next Pathways to Work interview has been rescheduled to the following week because that was on 10th March. And also in the post this morning I received my ESA letter confirming all the details of the changes now I've passed the ESA medical assessment and have been put into the support group.
One morning this week my mum received a fundraising letter from my old hospital, Hosp G. They are trying to raise money to build new cubicles because lots of the current ones are ridiculously small. To illustrate this to the general public, enclosed with the letter was a square of card to represent a cubicle and some stickers (to scale) to represent all the objects that need to be in the cubicle, so that people could try to see how well they all fitted in. Me and mum found this hilarious because we know very well from experience how little room there is in these cubicles after spending so much time in them. We're both going to donate some money.
Today I heard from I's mum that I is now home after her transplant :D
I found this on the Internet the other day, what do you think? I love this logo and it is now my profile photo on Facebook and Twitter :)
Yesterday despite feeling very tired I made it out to the cinema with mum where we saw Valentine's Day. It's not going to win any awards, but we really enjoyed watching it. It was very funny and featured loads of famous actors :) And some of the soundtrack featured Taylor Swift (she also acted in it), so I've downloaded one of her new songs from that, Today Was A Fairytale.
And mum and Alf went to the cinema this evening to see Avatar 3D. Alf saw it with Dad a while ago, but wanted to see it again so persuaded mum to go with him. She wasn't sure about it before she went, but then really enjoyed it. I didn't fancy it, I thought it would be too long for me.
Today I finished watching 2 DVDs which I'd previously started - Notting Hill and The Proposal. I really enjoyed both of them. I wanted to watch The Proposal when my parents were asleep tonight but was worried that I'd disturb them. So Alf suggested that I used the headphones and they worked really well :)
In town this afternoon I bought a DVD called Ghost from Sainsburys. A friend recommended it to me, so I'm looking forward to watching that and seeing what I think.
While I was in town I also bought myself the latest issue of the Radio Times. From that I discovered that series 2 of Nurse Jackie will be televised on BBC 2 later in the year, yay! And that although there wont be any more series of Gavin and Stacey there might be some one off specials. James Corden has promised one if this fan group on Facebook gets 3 million members, it currently has half a million. I also enjoyed reading about how the film An Education (which I've not seen yet but want to see) is based on a true story, but then the Radio Times went and revealed the ending! How stupid.
And the other thing I bought in town was a convector heater from Currys. I'm often very cold so my parents agreed to let me have a portable heater for my bedroom. And it's great, it warms the room up so quickly :D
The reason I went into town was for an eye test. It went well and my eyes haven't changed, so I don't need new glasses. I've been having annual eye tests since I got glasses at the age of 3 and I think this is the first time that my eyesight hasn't deteriorated. Yay! :D I didn't see my normal optician though, but a different one. She wasn't very talkative, but it went ok. She got very confused at one point about the prisms in my glasses, so I told her that I'm never straightforward! :P But it turned out that my usual optician had just written something down in a funny way.
On Tue night my mobile phone started playing up and displayed low battery and kept beeping low battery, but when I plugged it in to charge it it told me the battery was full. I've never had any problems with this phone before, so was quite worried. Luckily turning it off and on again fixed the problem. Phew!
This evening I heard very briefly from from Lizzy on Facebook. She had to go but said she'd phone soon to arrange a date for her and M to come and visit us. I can't wait :D And this afternoon I caught up with all my emails and PMs :)
I received an email from Amazon on Wed saying that my copy of Marina and the Diamonds' debut album, The Family Jewels, had been dispatched and the estimated delivery date is Sat. It's not officially released til Mon, so I should get it before then :) And the price for it on Amazon is now £8 but because I preordered it when it was just £5 I've only had to pay £5 for it. Today I discovered that The Family Jewels had just been put onto Marina's MySpace page so I could listen to it online. I've already listened to it through 3 times and I love it :D If you're interested, you can listen here. And me and mum have also listened to The Noisettes CD because we're seeing them in concert on Tue :D
Since my last update I've played more on New Super Mario Bros Wii and have made some more progress on it. And I've also played on Picross DS some more.
I've not watched much on TV over the last couple of days. I started watching a Horizon programme about geniuses but I couldn't concentrate on it so soon gave up. And I also watched quite an interesting Channel 4 documentary about gypsy/traveller weddings.
Tomorrow Claire is coming round, I've no plans for Sat and then on Sun we're going out for a meal with the extended family. Next Tue I'm seeing The Noisettes in concert and then that Sun I'm seeing Mika in concert again! :D
On Tue night I was very nocturnal again, but last night I went to bed at about midnight. And you can probably tell by the time of this update that I'm nocturnal again tonight. So my getting into bed by midnight is not working at the moment :P
Yesterday my shoulder was loads better and has continued to improve though it's still a bit achy and stiff. I was very tired yesterday but haven't felt too bad today, which might have been related to getting to bed at a more sensible time last night.
After I wrote my last update on Tue I heard back from my dietician at Hosp B in response to the email I sent her with my weight that morning. She was very impressed and her reply included lots of exclamation marks :) That day I tried pancakes for Pancake Day and didn't like them at all because they were all rubbery! Today I was also a bit adventurous with my eating, I don't usually like trying new foods. I had a chicken and stuffing sandwich for lunch, which wasn't too bad and tried an anchovy in the evening - yuk! I've got a bit fed up of food and eating today though. Since I came off overnight feeds I've also been making a real effort with my drinking and am now drinking about a litre a day. It's probably still not quite enough, but it's much better than what I had been drinking. And I keep swallowing my elastics from my braces when I'm eating, whoops! :P
This morning I received a letter from Hosp A for a clinic appt with my consultant there (Dr W) for 10th March. When I last saw him last July he said he'd see me again in 3 months, March will be 8 months! This transition isn't going very well :P I emailed my dietician this evening to see if she knew whether this was a joint clinic (where the team from Hosp B are there too) because I'd heard there was one coming up, or just a Hosp A clinic. She said she thinks that there's a joint clinic on 24th March so suggests that I try phoning Dr W's secretary tomorrow to find out what's happening as there's no point me seeing him twice in one month! My next Pathways to Work interview has been rescheduled to the following week because that was on 10th March. And also in the post this morning I received my ESA letter confirming all the details of the changes now I've passed the ESA medical assessment and have been put into the support group.
One morning this week my mum received a fundraising letter from my old hospital, Hosp G. They are trying to raise money to build new cubicles because lots of the current ones are ridiculously small. To illustrate this to the general public, enclosed with the letter was a square of card to represent a cubicle and some stickers (to scale) to represent all the objects that need to be in the cubicle, so that people could try to see how well they all fitted in. Me and mum found this hilarious because we know very well from experience how little room there is in these cubicles after spending so much time in them. We're both going to donate some money.
Today I heard from I's mum that I is now home after her transplant :D
I found this on the Internet the other day, what do you think? I love this logo and it is now my profile photo on Facebook and Twitter :)
Yesterday despite feeling very tired I made it out to the cinema with mum where we saw Valentine's Day. It's not going to win any awards, but we really enjoyed watching it. It was very funny and featured loads of famous actors :) And some of the soundtrack featured Taylor Swift (she also acted in it), so I've downloaded one of her new songs from that, Today Was A Fairytale.
And mum and Alf went to the cinema this evening to see Avatar 3D. Alf saw it with Dad a while ago, but wanted to see it again so persuaded mum to go with him. She wasn't sure about it before she went, but then really enjoyed it. I didn't fancy it, I thought it would be too long for me.
Today I finished watching 2 DVDs which I'd previously started - Notting Hill and The Proposal. I really enjoyed both of them. I wanted to watch The Proposal when my parents were asleep tonight but was worried that I'd disturb them. So Alf suggested that I used the headphones and they worked really well :)
In town this afternoon I bought a DVD called Ghost from Sainsburys. A friend recommended it to me, so I'm looking forward to watching that and seeing what I think.
While I was in town I also bought myself the latest issue of the Radio Times. From that I discovered that series 2 of Nurse Jackie will be televised on BBC 2 later in the year, yay! And that although there wont be any more series of Gavin and Stacey there might be some one off specials. James Corden has promised one if this fan group on Facebook gets 3 million members, it currently has half a million. I also enjoyed reading about how the film An Education (which I've not seen yet but want to see) is based on a true story, but then the Radio Times went and revealed the ending! How stupid.
And the other thing I bought in town was a convector heater from Currys. I'm often very cold so my parents agreed to let me have a portable heater for my bedroom. And it's great, it warms the room up so quickly :D
The reason I went into town was for an eye test. It went well and my eyes haven't changed, so I don't need new glasses. I've been having annual eye tests since I got glasses at the age of 3 and I think this is the first time that my eyesight hasn't deteriorated. Yay! :D I didn't see my normal optician though, but a different one. She wasn't very talkative, but it went ok. She got very confused at one point about the prisms in my glasses, so I told her that I'm never straightforward! :P But it turned out that my usual optician had just written something down in a funny way.
On Tue night my mobile phone started playing up and displayed low battery and kept beeping low battery, but when I plugged it in to charge it it told me the battery was full. I've never had any problems with this phone before, so was quite worried. Luckily turning it off and on again fixed the problem. Phew!
This evening I heard very briefly from from Lizzy on Facebook. She had to go but said she'd phone soon to arrange a date for her and M to come and visit us. I can't wait :D And this afternoon I caught up with all my emails and PMs :)
I received an email from Amazon on Wed saying that my copy of Marina and the Diamonds' debut album, The Family Jewels, had been dispatched and the estimated delivery date is Sat. It's not officially released til Mon, so I should get it before then :) And the price for it on Amazon is now £8 but because I preordered it when it was just £5 I've only had to pay £5 for it. Today I discovered that The Family Jewels had just been put onto Marina's MySpace page so I could listen to it online. I've already listened to it through 3 times and I love it :D If you're interested, you can listen here. And me and mum have also listened to The Noisettes CD because we're seeing them in concert on Tue :D
Since my last update I've played more on New Super Mario Bros Wii and have made some more progress on it. And I've also played on Picross DS some more.
I've not watched much on TV over the last couple of days. I started watching a Horizon programme about geniuses but I couldn't concentrate on it so soon gave up. And I also watched quite an interesting Channel 4 documentary about gypsy/traveller weddings.
Tomorrow Claire is coming round, I've no plans for Sat and then on Sun we're going out for a meal with the extended family. Next Tue I'm seeing The Noisettes in concert and then that Sun I'm seeing Mika in concert again! :D
Thursday, 4 February 2010
A busy day yesterday and exhaustion again
I know it's not long since my last update, but I thought I'd update again now to hopefully try and stop my updates being as ridiculously long! I suspect it wont last though :P
On Tue I rang Lizzy to let her know about a TV programme on that night that I thought she might be interested in. It was lovely chatting to her :) While I was on the phone to Lizzy, my aunt's partner called round with a dead hare for us. There are quite a few people who bring us game round every so often which dad prepares it in the garage and then mum cooks it for a meal. We often have rabbits, pigeons and pheasants. We've also eaten muntjac deer and squirrel! And last night and tonight we ate our first hare.
On Tue evening I suddenly started to feel completely exhausted so lay on the sofa for a while to rest. I didn't mean to fall asleep, but I did doze for a bit. Then dad decided that he was bored, so put the TV on. Grrr. I felt a bit better later on that evening though so helped mum put some photos up on Ravelry. We found some photos of a very cute knitted monkey, so then mum looked up the pattern for it on Ravelry and is currently knitting me one :) All of the pieces are knitted and stuffed now and mum is going to finish sewing it together tomorrow. I'll post up a photo on my next update :)
And as I said on my last blog update, my dietician emailed me on Tue night and let me stop my feeds :D She's going to phone tomorrow to talk to me about my food and symptom diary. Hopefully she'll have some helpful suggestions as my tummy pains have been very bad over the last few days.
And on Tue I heard the new Haiti charity single for the first time. You can see the video here. I personally think it sounds horrible, but I'm sure it'll sell well because it's for charity and has so many famous names in it. I was disappointed at how little of Mika you hear, but apparently he plays the piano in it too. I couldn't work out who the voices belonged too, but then I found this list that names the artists and the order they sing in, so I found that helped.
That evening I watched a very interesting programme on the BBC about selective mutism called My Child Wont Speak. And that day I watched Bride Wars on DVD :) We also watched the first ever episode of the Royle Family on DVD.
I had a very busy day yesterday. I usually get up around 10 or 11am, but heard that Marina and the Diamonds concert tickets for her May tour would go on sale at 9am yesterday morn, so I got up at 8.45am! Frustratingly though all the venues are standing only and I can't stand for that long. So I wont be going :( Hopefully if she gets famous though she'll do a bigger tour including venues with seating, fingers crossed.
Marina and the Diamonds was on GMTV this morn which you can watch here. The song she performs on the clip is actually called Hollywood, unlike what the caption on the video clip says. Hollywood is currently number 13 in the iTunes downloads and has been for a few days. Hopefully it'll chart inside the top 10 on Sun. I found 2 free Marina and the Diamonds downloads from her website today (click 'downloads' at the top of the page) - I didn't like the Hollywood remix, but love the live version of I Am Not A Robot. And I discovered that her debut album, The Family Jewels, was available to preorder on Amazon for just £4.98 here, so I preordered that.
And yesterday morn I spoke to K's mum on MSN. It was ages since I'd last spoken to her so it was great to hear that K is out of hospital and doing well at the moment :)
Me and mum called in at the surgery to pick up some more high calorie puddings for me and we also let the pharmacist know that I'm now having 7 a week rather than just 4 a week. So they'll be ordered in fortnightly for me.
Then we went into town. I had a bit of time to spare before my 2nd Pathways to Work appt so did a bit of shopping. I picked up a really interesting book all about the making of the film Chicken Run in a charity shop for just £1.50 (it would cost £20 new!). And then we went to Boots to look at what they had to help my feet. I chose a pair of things to put in my shoes which should cushion my heels and support the arches of my feet. I couldn't believe that they cost £10 though. Luckily mum had some money on a Boots gift card so that covered it as well as some toothbrush head covers that I bought.
My Pathways to Work appt went ok. I told my advisor that I didn't think I'd be able to do any voluntary work because my health isn't predictable enough to do anything regularly. She thought that working in a charity shop would be the best kind of voluntary work for me to try, so suggested that between us we phone some local charity shops and ask how they'd be if I was to volunteer but couldn't always make it in. So my advisor is going to phone the 6 charity shops in that town and I'm going to phone the 7 charity shops in another local town. I'm still not confident using the phone, but I'll give it a try. I'm not sure about working in a charity shop. I don't mind charity shops, in fact I shop in them a lot, but just don't really like the idea of working in a shop. I guess I could try it though and I could always quit if I didn't enjoy it. We're meeting again next month and we'll see where we've both got with the phone calls then.
After my Pathways to Work appt I met mum in Sainsburys where we had drinks in the cafe. And I picked up a copy of The Proposal on DVD for £5, which is cheaper than it is anywhere on the Internet :)
And then yesterday evening Claire came round after work and we went into the city to the cinema. The cinema we went to was lovely, such a contrast to the big multiplex Cineworld I usually go to. There was a great atmosphere and it felt more like going to the theatre than the cinema. The actual screen was a bit smaller so I worried that I wouldn't be as absorbed, but I was. And everyone took glasses of wine into the cinema! It was a little bit more expensive than Cineworld, but they accepted my CEA card.
The film we saw, Precious, was amazing. It's such a powerful film, really well made and the acting was incredible and so believable. I thought some of the film making techniques they used, such as the completely black screen at points and also the lack of background music, were very effective. The film was really shocking and so sad, I thought I was going to have to leave the cinema at one point because it was so hard to watch. But I'm definitely glad I saw it though and would highly recommend it. I'm glad I went with Claire rather than mum though as I know mum wouldn't have been able to cope with it.
The Oscar nominations were announced earlier this week and you can see them here. Precious is nominated for 6 awards and I really hope it wins some of them as I think it definitely deserves to.
When we left the cinema and headed back to the car, the parking machine gave Claire an extra pound in change :) On the way back me and Claire were chatting in the car and on about 3 occasions I meant to say one word, but actually ended up saying a different, but similar sounding word. For example Claire asked what I'd thought of the cinema and I wanted to say it was very different to Cineworld, but I actually ended up saying “It was very difficult” which wasn't what I meant. Grr. It was odd as that's never happened to me before, but I know that it can be an ME thing. Claire then came back for a bit and we played on the Wii together :)
Before I got up this morning, mum got a phone call from Hosp B saying that they hadn't received my blood results from Hosp H! This happened last time I had bloods done, but they were found eventually that time, so hopefully they will be this time. I think it's probably due to the new phlebotomist at Hosp H.
This morning I bought a present for my friend Rosie online, even though her birthday isn't til May! And it was dispatched to me this afternoon. I feel very organised :) I can't say any more here as I know Rosie will be reading.
This week my mum wanted to knit something from the yarn that my uncle Dan gave her on Sun and the blue eyelash yarn reminded her of a thistle, so that's what she knitted!
While mum and Alf were out at the optician today, I printed out a photo of the thistle she'd knitted for her (as mum isn't very good with technology) and then she made it into a card to send to Dan and Diane. Mum was very pleased that I printed the photo out for her, so in exchange she said she'd make a phone call for me. When I used to do things for her, in return she'd say she'd wash my NG tube because I used to hate doing that, but obviously that swap wont work any more. At the optician she'd enquired when my next eye test should be as I thought I was due one, but didn't get a reminder letter like mum and Alf did. It turns out I am due an eye test (in fact it's a few months overdue), so I don't know what happened to my reminder letter. So mum phoned up to arrange me an eye test for next Thur and also helped sort out me getting the eye test for free because I'm on ESA. I knew it should be free, but the receptionist couldn't find ESA on her list. It was sorted in the end though.
This afternoon my older brother Chris phoned which was quite a surprise because he's not been in touch for a while. They've almost finished the move now, but still need to do some degu proofing :P And they haven't found out how to use the heating yet either! Chris was ill earlier in the week, but is better now. Me and mum have been invited over to their new cottage next Wed :) And Chris is going to help me put my spare Mika tickets up on eBay. They were dispatched today so should get to me in plenty of time for me to send them on to whoever buys them before the concert.
I tried to watch my new DVD, The Proposal, this afternoon. I loved it when I saw it in the cinema. But my tummy really hurt and I just couldn't concentrate on it, so had to give up with it for the time being. I was completely exhausted and after tea I got quite fed up. But I listened to some music (Marina and the Diamonds, Ellie Goulding, Mika and Pixie Lott) on my laptop and that cheered me up :)
Because I can only drink cooled boiled water, I always keep a jug of it in the fridge. When I notice that my jug of water is getting empty, then I boil the kettle, pour it into another jug and put it outside to cool overnight. So tonight I was preparing a new jug and had just boiled the kettle. I started to pour the kettle of boiling water into the jug and everything started off fine. Then I realised that I was no longer pouring into the jug, but instead was pouring the boiling water all over the kitchen work top and the floor. Luckily I got my feet out of the way just in time. Whoops. Mum suggested that from now on I should put the jug in the sink to fill it up, so if I miss with the boiling water it will only go in the sink.
On TV I've just watched a Channel 4 documentary called 8 Boys and Wanting a Girl.
Alf is very annoyed at the moment because the local bus timetable is about to have drastic cutbacks. We've got a copy of the new timetable, but it wont come into effect til 14th Feb. This bus route runs from one of our local towns, through our village and to the other local town with a couple of other villages along the route. Alf uses the buses regularly to meet up with his friends in the town where we both used to go to school. The buses were half hourly, but will now go to hourly. Currently the last bus is at about 11pm, so Alf can go into town to meet up with his friends in the evenings and come home on the last bus. But that's not going to be possible any longer as the last bus will be just after 7pm! He's got a bike (that he got for Christmas), but the weather isn't really cycling weather yet, so I don't know what he's going to do. I reckon he ought to get a job and save up some money so he can start learning to drive when he turns 17 next month, but he's never going to get a job, he's too lazy!
A couple of times this week I've had a funny feeling in my arms or hands that I've not had before. It feels like the feeling you get after you've had cramp, but I haven't had cramp. How odd. I'll just blame it on ME and see how it goes.
That update was longer than I expected, but at least it's not as long as it would have been if I'd left it longer to update! :P
On Tue I rang Lizzy to let her know about a TV programme on that night that I thought she might be interested in. It was lovely chatting to her :) While I was on the phone to Lizzy, my aunt's partner called round with a dead hare for us. There are quite a few people who bring us game round every so often which dad prepares it in the garage and then mum cooks it for a meal. We often have rabbits, pigeons and pheasants. We've also eaten muntjac deer and squirrel! And last night and tonight we ate our first hare.
On Tue evening I suddenly started to feel completely exhausted so lay on the sofa for a while to rest. I didn't mean to fall asleep, but I did doze for a bit. Then dad decided that he was bored, so put the TV on. Grrr. I felt a bit better later on that evening though so helped mum put some photos up on Ravelry. We found some photos of a very cute knitted monkey, so then mum looked up the pattern for it on Ravelry and is currently knitting me one :) All of the pieces are knitted and stuffed now and mum is going to finish sewing it together tomorrow. I'll post up a photo on my next update :)
And as I said on my last blog update, my dietician emailed me on Tue night and let me stop my feeds :D She's going to phone tomorrow to talk to me about my food and symptom diary. Hopefully she'll have some helpful suggestions as my tummy pains have been very bad over the last few days.
And on Tue I heard the new Haiti charity single for the first time. You can see the video here. I personally think it sounds horrible, but I'm sure it'll sell well because it's for charity and has so many famous names in it. I was disappointed at how little of Mika you hear, but apparently he plays the piano in it too. I couldn't work out who the voices belonged too, but then I found this list that names the artists and the order they sing in, so I found that helped.
That evening I watched a very interesting programme on the BBC about selective mutism called My Child Wont Speak. And that day I watched Bride Wars on DVD :) We also watched the first ever episode of the Royle Family on DVD.
I had a very busy day yesterday. I usually get up around 10 or 11am, but heard that Marina and the Diamonds concert tickets for her May tour would go on sale at 9am yesterday morn, so I got up at 8.45am! Frustratingly though all the venues are standing only and I can't stand for that long. So I wont be going :( Hopefully if she gets famous though she'll do a bigger tour including venues with seating, fingers crossed.
Marina and the Diamonds was on GMTV this morn which you can watch here. The song she performs on the clip is actually called Hollywood, unlike what the caption on the video clip says. Hollywood is currently number 13 in the iTunes downloads and has been for a few days. Hopefully it'll chart inside the top 10 on Sun. I found 2 free Marina and the Diamonds downloads from her website today (click 'downloads' at the top of the page) - I didn't like the Hollywood remix, but love the live version of I Am Not A Robot. And I discovered that her debut album, The Family Jewels, was available to preorder on Amazon for just £4.98 here, so I preordered that.
And yesterday morn I spoke to K's mum on MSN. It was ages since I'd last spoken to her so it was great to hear that K is out of hospital and doing well at the moment :)
Me and mum called in at the surgery to pick up some more high calorie puddings for me and we also let the pharmacist know that I'm now having 7 a week rather than just 4 a week. So they'll be ordered in fortnightly for me.
Then we went into town. I had a bit of time to spare before my 2nd Pathways to Work appt so did a bit of shopping. I picked up a really interesting book all about the making of the film Chicken Run in a charity shop for just £1.50 (it would cost £20 new!). And then we went to Boots to look at what they had to help my feet. I chose a pair of things to put in my shoes which should cushion my heels and support the arches of my feet. I couldn't believe that they cost £10 though. Luckily mum had some money on a Boots gift card so that covered it as well as some toothbrush head covers that I bought.
My Pathways to Work appt went ok. I told my advisor that I didn't think I'd be able to do any voluntary work because my health isn't predictable enough to do anything regularly. She thought that working in a charity shop would be the best kind of voluntary work for me to try, so suggested that between us we phone some local charity shops and ask how they'd be if I was to volunteer but couldn't always make it in. So my advisor is going to phone the 6 charity shops in that town and I'm going to phone the 7 charity shops in another local town. I'm still not confident using the phone, but I'll give it a try. I'm not sure about working in a charity shop. I don't mind charity shops, in fact I shop in them a lot, but just don't really like the idea of working in a shop. I guess I could try it though and I could always quit if I didn't enjoy it. We're meeting again next month and we'll see where we've both got with the phone calls then.
After my Pathways to Work appt I met mum in Sainsburys where we had drinks in the cafe. And I picked up a copy of The Proposal on DVD for £5, which is cheaper than it is anywhere on the Internet :)
And then yesterday evening Claire came round after work and we went into the city to the cinema. The cinema we went to was lovely, such a contrast to the big multiplex Cineworld I usually go to. There was a great atmosphere and it felt more like going to the theatre than the cinema. The actual screen was a bit smaller so I worried that I wouldn't be as absorbed, but I was. And everyone took glasses of wine into the cinema! It was a little bit more expensive than Cineworld, but they accepted my CEA card.
The film we saw, Precious, was amazing. It's such a powerful film, really well made and the acting was incredible and so believable. I thought some of the film making techniques they used, such as the completely black screen at points and also the lack of background music, were very effective. The film was really shocking and so sad, I thought I was going to have to leave the cinema at one point because it was so hard to watch. But I'm definitely glad I saw it though and would highly recommend it. I'm glad I went with Claire rather than mum though as I know mum wouldn't have been able to cope with it.
The Oscar nominations were announced earlier this week and you can see them here. Precious is nominated for 6 awards and I really hope it wins some of them as I think it definitely deserves to.
When we left the cinema and headed back to the car, the parking machine gave Claire an extra pound in change :) On the way back me and Claire were chatting in the car and on about 3 occasions I meant to say one word, but actually ended up saying a different, but similar sounding word. For example Claire asked what I'd thought of the cinema and I wanted to say it was very different to Cineworld, but I actually ended up saying “It was very difficult” which wasn't what I meant. Grr. It was odd as that's never happened to me before, but I know that it can be an ME thing. Claire then came back for a bit and we played on the Wii together :)
Before I got up this morning, mum got a phone call from Hosp B saying that they hadn't received my blood results from Hosp H! This happened last time I had bloods done, but they were found eventually that time, so hopefully they will be this time. I think it's probably due to the new phlebotomist at Hosp H.
This morning I bought a present for my friend Rosie online, even though her birthday isn't til May! And it was dispatched to me this afternoon. I feel very organised :) I can't say any more here as I know Rosie will be reading.
This week my mum wanted to knit something from the yarn that my uncle Dan gave her on Sun and the blue eyelash yarn reminded her of a thistle, so that's what she knitted!
While mum and Alf were out at the optician today, I printed out a photo of the thistle she'd knitted for her (as mum isn't very good with technology) and then she made it into a card to send to Dan and Diane. Mum was very pleased that I printed the photo out for her, so in exchange she said she'd make a phone call for me. When I used to do things for her, in return she'd say she'd wash my NG tube because I used to hate doing that, but obviously that swap wont work any more. At the optician she'd enquired when my next eye test should be as I thought I was due one, but didn't get a reminder letter like mum and Alf did. It turns out I am due an eye test (in fact it's a few months overdue), so I don't know what happened to my reminder letter. So mum phoned up to arrange me an eye test for next Thur and also helped sort out me getting the eye test for free because I'm on ESA. I knew it should be free, but the receptionist couldn't find ESA on her list. It was sorted in the end though.
This afternoon my older brother Chris phoned which was quite a surprise because he's not been in touch for a while. They've almost finished the move now, but still need to do some degu proofing :P And they haven't found out how to use the heating yet either! Chris was ill earlier in the week, but is better now. Me and mum have been invited over to their new cottage next Wed :) And Chris is going to help me put my spare Mika tickets up on eBay. They were dispatched today so should get to me in plenty of time for me to send them on to whoever buys them before the concert.
I tried to watch my new DVD, The Proposal, this afternoon. I loved it when I saw it in the cinema. But my tummy really hurt and I just couldn't concentrate on it, so had to give up with it for the time being. I was completely exhausted and after tea I got quite fed up. But I listened to some music (Marina and the Diamonds, Ellie Goulding, Mika and Pixie Lott) on my laptop and that cheered me up :)
Because I can only drink cooled boiled water, I always keep a jug of it in the fridge. When I notice that my jug of water is getting empty, then I boil the kettle, pour it into another jug and put it outside to cool overnight. So tonight I was preparing a new jug and had just boiled the kettle. I started to pour the kettle of boiling water into the jug and everything started off fine. Then I realised that I was no longer pouring into the jug, but instead was pouring the boiling water all over the kitchen work top and the floor. Luckily I got my feet out of the way just in time. Whoops. Mum suggested that from now on I should put the jug in the sink to fill it up, so if I miss with the boiling water it will only go in the sink.
On TV I've just watched a Channel 4 documentary called 8 Boys and Wanting a Girl.
Alf is very annoyed at the moment because the local bus timetable is about to have drastic cutbacks. We've got a copy of the new timetable, but it wont come into effect til 14th Feb. This bus route runs from one of our local towns, through our village and to the other local town with a couple of other villages along the route. Alf uses the buses regularly to meet up with his friends in the town where we both used to go to school. The buses were half hourly, but will now go to hourly. Currently the last bus is at about 11pm, so Alf can go into town to meet up with his friends in the evenings and come home on the last bus. But that's not going to be possible any longer as the last bus will be just after 7pm! He's got a bike (that he got for Christmas), but the weather isn't really cycling weather yet, so I don't know what he's going to do. I reckon he ought to get a job and save up some money so he can start learning to drive when he turns 17 next month, but he's never going to get a job, he's too lazy!
A couple of times this week I've had a funny feeling in my arms or hands that I've not had before. It feels like the feeling you get after you've had cramp, but I haven't had cramp. How odd. I'll just blame it on ME and see how it goes.
That update was longer than I expected, but at least it's not as long as it would have been if I'd left it longer to update! :P
Wednesday, 13 January 2010
Physio, weight and listening to music
On top of my exhaustion this week I also had a sore throat for a couple of days and now I suspect I might be coming down with a cold. My mum is hardly ever ill, but she's been feeling awful with a cold for the last few days :( So I'm hoping she'll soon feel better and if I develop her cold her I really hope it doesn't affect me as badly, fingers crossed.
On Monday I made a phone call to chase up my Tac delivery because they had said the previous Mon that they needed to contact Hosp B to confirm that they had doubled my dose and would then ring me back to arrange a delivery. But I'd not heard anything and was worried because I had less than one week's supply of Tac left. When I rang them they said that all the paperwork had been completed by Hosp B so they would be able to send me a delivery. It was arranged for today and so arrived this morning. Phew! If I hadn't chased them up I think I might have ended up running out of Tac. And dad collected some of my other tablets from the pharmacy when he went to the GP that morning for his diabetes review (which went fine).
Then on Monday we headed out to Hosp A for my first physio appt. When I last had a clinic at Hosp B they were shocked I wasn't getting any support for my ME locally, so the physio there suggested getting me some physio locally to see if that helped my ME. However she didn't refer me to Hosp H, which is 6 miles away and takes 10mins to get to in the car, but instead referred me to Hosp A, which is 25 miles away and because it's in the city it takes an hour and a quarter to drive to! And when I saw a physio he read out my referral letter which didn't even mention ME! And he didn't seem to know anything about ME either! Grrr. My appt lasted for an hour and he made some suggestions to me. Some, such as splitting tasks up into smaller chunks, sounded sensible. But some, such as going from doing as little as I am now to doing a brisk 5 to 10 min walk each day, I suspect could do me more harm than good. And he wants to see me weekly, which isn't practical with the distance we live away. So I had a think about it and thought I'd give it one more try and talk to him about my concerns. I phoned the receptionist yesterday to arrange a second appt and told her that I can't make appts on Tues (because my mum works so I have no transport) and I can't manage to get there before 10am. They couldn't fit me in in the next month! So she said she'd talk to my physio and ring me back, but I've not heard yet. I'm hoping that either they'll give me an appt for in a month or so or will refer me to Hosp H. And ideally I'd like to see a physio who knows about ME too. Surely that's not too much to ask.
After my physio appt we had drinks in the cafe in the outpatient area at Hosp A and I called in the shop to top up my phone. Then we headed back to the car in the multistory car park. Walking towards the car mum couldn't find her car keys in her bag. Then we got to the car to find a note on the windscreen saying that her car keys had been handed in at reception. She must have left them in the car door, whoops! We assumed that by reception they meant customer services on the ground floor of the car park, but there was a note with the man there saying to go to the hospital reception. We found the keys there.
When we got home I was exhausted and was also shattered yesterday too. On Mon eve my dad went out to his first swimming lesson. He can swim, but not very efficiently, so has just joined an improvers class. He enjoyed it and sounds eager to go swimming again when he can. He pays for his lessons, but outside of lessons he can swim for free now he's 60. He had ordered some prescription goggles, but they didn't arrive until Tues morn. He'll use them for swimming from now on though. I used to love swimming, but am not well enough to do it at the moment. I do miss it though.
While dad was out at his swimming lesson, Chris and Sophie came round. They are hoping to move house. They currently live in a nice little flat and have been there since last March. But they don't get on with their neighbours and feel that they're outgrowing the flat (which might be due to the fact that they now have 4 degus!). So before they came to see us they went to look round a little cottage in a nearby village. It's quite small so the rent is only a little bit more than their current rent, but they think they can afford it. They are currently waiting to hear from the landlord (who lives in Australia), but are hoping to move in at the start of March.
And F was due to come round on Mon eve, but didn't turn up. That was the second time she'd arranged to come round. The first time she didn't make it because she was ill, but forgot to contact me to let me know. And then on Mon something came up so she couldn't make it, but I didn't find out until I text her after she was due to have come. Again she forgot to contact me. But I don't know the circumstances, so can't blame her. I was disappointed though.
Yesterday I didn't manage to do much because I was so tired. I watched a lot of TV. We found out that my nan is still in hospital because she's got diarrhoea. The doctors don't yet know why, so have delayed her discharge til she's better. Until we know the cause we can't risk visiting her at the moment just in case one of us was to pick something up, as tummy bugs can be very dangerous for me. Hopefully she'll feel better soon.
I have to have a go at putting together a draft CV before I see someone at Pathways to Work in a couple of weeks to help me put a proper one together. Chris is great with CVs (his makes people believe he has voluntarily left all the jobs he has been fired from, lol!), so he's emailed me his to have a look at and said to contact him if I need any help. So that is going to be one of my jobs for the next week or so.
As you know my mum works in the village library. There is only her and one other regular member of staff, but they have some relief staff in case they are ill etc. One of the relief staff is called A and my mum and many other people refer to her as Saint A. Saint A is very odd, very religious, calls her parents 'Mummy' and 'Daddy' despite being quite old (maybe in her 50s) and believes everyone loves her but every time she works in the library she ends up upsetting all the customers! For some reason she is currently in the process of setting up a discussion group for teenagers (over 15s) in the village. I'm not sure how often it will take place but the first session is one Friday eve at the start of Feb and I've got an invite. And hilariously, so has Alf! There isn't much for teenagers to do in the village, but we're not that desperate! I haven't actually seen the invite yet because mum has left it at work, but I was talking to a friend, V, who has also got an invite and apparently there will also be bread and soup available at the group. Mum says that it is mostly teenagers that Saint A knows from church who have been invited, but it's not a religuous discussion group - thank goodness. V is desperately trying to think up a good excuse to get out of it and so I'm not going if she's not going because I don't fancy it on my own but it might be a laugh together. So I'll let you know what V decides to do. Alf has already said no chance.
On Sun I was supposed to start keeping a diary of my food intake and tummy pains for a week for my dietician, but I forgot, so started on Mon instead. Keeping the diary is going ok, but it's sod's law, now I'm recording everything my tummy pains aren't nearly as frequent, long lasting or painful! Grrr.
My weight on Tue morn was 50.9kg. I can't stop feeds til I reach 51kg. The previous week I was 50.8kg, so fingers crossed I'll be 51kg next Tue. I'm still trying the various high calorie supplements. I've had another (my third and final) strawberry pudding and I don't mind those so am going to contact the pharmacy at my GP surgery tomorrow (I tried today but for some reason they were shut) to see if they can order me some more in. I started a yoghurt style Fortisip drink yesterday but then thought that I had better check with my dietician that I was ok to eat it because I have to avoid most youghurts because they contain probiotics, which could be dangerous to me because I've had a small bowel transplant. My dietician said that they are fine for me to drink, but that one has been open for too long now, so I'll try the other one tomorrow. I'm not at all keen on the flavours (vanilla & lemon and raspberry) but am going to try to judge it on the texture and then if that's ok I'll enquire about different flavours.
I've been catching up with some emails and letters over the last couple of days and seem to be on top of them now. This morning I got a lovely card and letter from Kate, my AYME buddy. She's having a tough time at the moment with her health, so I've written her a letter today and hope to get that in the post to her soon.
It's been snowing here for most of the day, but interspersed with rain and sleet, so none of it has settled. I'm feeling better today than I did Mon aft and yesterday, despite possibly having the start of a cold. My mum isn't well enough to go out the cinema tonight, but me and Claire are still hoping to go together to see St Trinians :)
I've recently heard that Mika's next single to be released in the UK will be Blame it on the Girls. I love this song and was disappointed when it was released in the USA and Japan at the end of last year, but we got Rain here instead (which is good, but not as good in my opinion). I've already heard Blame it on the Girls being played on the radio already even though it's not going to be released til Feb and it cheers me up every time I hear it :)
In my last blog update I mentioned that Ellie Goulding who I'd seen supporting Little Boots had been named as the BBC's Sound of 2010. She released the great Under The Sheets last year. Since then mum told me that she'd heard a song of hers called Starry Eyes on the radio a couple of times, so I looked it up and found out that it will be her next single which will be released in Feb before her debut album in March. I really like it and can remember her performing it when we saw her live. And a friend pointed me to an interesting cover that Ellie Goulding has done of Sam Sparrow's Black and Gold.
Another artist on the BBC's Sound of 2010 list is Owl City. I don't know much about him, but have heard Fireflies on the music channels a few times this week and really like it.
And Justin Bieber (who we saw supporting Taylor Swift in November) keeps popping up on the music channels with his latest video, One Time. I'm not a fan though.
Since my last update me and mum managed to finish watching Pride and Prejudice (the Kiera Knightley version). I didn't really like it though and wouldn't watch it again. And I've watched 27 Dresses which I enjoyed. I also attemped to watch Magagascar 2 yesterday, but couldn't follow it because I was so tired. I'll try again another time.
On DVD I've watched 3 and a half episodes of the Vicar of Dibley and 2 episodes of Gavin and Stacey. And one of my rental DVDs that came is an S Club 7 one (I used to love them), with interviews and music videos. I watched the interviews yesterday and am looking forward to watching the music videos because I don't think I've actually seen many of them.
And I've watched a bit on TV too. When I'm tired the music channels are always easy to watch. And today I watched an old Jools Holland we'd recorded but not watched yet that featured Ellie Goulding :) On our hard disc recorder I also discovered a special edition of the Culture Show from a few months ago which was celebrating 20 years of Wallace and Gromit, so I enjoyed watching that. I also watched the brilliant Nurse Jackie, Film 2010 (I was disappointed that Sandra Bullock's latest film got such an awful review), Channel 4's Bodyshock: Girl Who Cries Blood and half of an episode of Wanted Down Under until I got bored.
Although I only knew Jess through friends, her death last night has really got me thinking. I wrote a brief blog post about her death here, but might write more in my next blog once my thoughts make a bit more sense.
On Monday I made a phone call to chase up my Tac delivery because they had said the previous Mon that they needed to contact Hosp B to confirm that they had doubled my dose and would then ring me back to arrange a delivery. But I'd not heard anything and was worried because I had less than one week's supply of Tac left. When I rang them they said that all the paperwork had been completed by Hosp B so they would be able to send me a delivery. It was arranged for today and so arrived this morning. Phew! If I hadn't chased them up I think I might have ended up running out of Tac. And dad collected some of my other tablets from the pharmacy when he went to the GP that morning for his diabetes review (which went fine).
Then on Monday we headed out to Hosp A for my first physio appt. When I last had a clinic at Hosp B they were shocked I wasn't getting any support for my ME locally, so the physio there suggested getting me some physio locally to see if that helped my ME. However she didn't refer me to Hosp H, which is 6 miles away and takes 10mins to get to in the car, but instead referred me to Hosp A, which is 25 miles away and because it's in the city it takes an hour and a quarter to drive to! And when I saw a physio he read out my referral letter which didn't even mention ME! And he didn't seem to know anything about ME either! Grrr. My appt lasted for an hour and he made some suggestions to me. Some, such as splitting tasks up into smaller chunks, sounded sensible. But some, such as going from doing as little as I am now to doing a brisk 5 to 10 min walk each day, I suspect could do me more harm than good. And he wants to see me weekly, which isn't practical with the distance we live away. So I had a think about it and thought I'd give it one more try and talk to him about my concerns. I phoned the receptionist yesterday to arrange a second appt and told her that I can't make appts on Tues (because my mum works so I have no transport) and I can't manage to get there before 10am. They couldn't fit me in in the next month! So she said she'd talk to my physio and ring me back, but I've not heard yet. I'm hoping that either they'll give me an appt for in a month or so or will refer me to Hosp H. And ideally I'd like to see a physio who knows about ME too. Surely that's not too much to ask.
After my physio appt we had drinks in the cafe in the outpatient area at Hosp A and I called in the shop to top up my phone. Then we headed back to the car in the multistory car park. Walking towards the car mum couldn't find her car keys in her bag. Then we got to the car to find a note on the windscreen saying that her car keys had been handed in at reception. She must have left them in the car door, whoops! We assumed that by reception they meant customer services on the ground floor of the car park, but there was a note with the man there saying to go to the hospital reception. We found the keys there.
When we got home I was exhausted and was also shattered yesterday too. On Mon eve my dad went out to his first swimming lesson. He can swim, but not very efficiently, so has just joined an improvers class. He enjoyed it and sounds eager to go swimming again when he can. He pays for his lessons, but outside of lessons he can swim for free now he's 60. He had ordered some prescription goggles, but they didn't arrive until Tues morn. He'll use them for swimming from now on though. I used to love swimming, but am not well enough to do it at the moment. I do miss it though.
While dad was out at his swimming lesson, Chris and Sophie came round. They are hoping to move house. They currently live in a nice little flat and have been there since last March. But they don't get on with their neighbours and feel that they're outgrowing the flat (which might be due to the fact that they now have 4 degus!). So before they came to see us they went to look round a little cottage in a nearby village. It's quite small so the rent is only a little bit more than their current rent, but they think they can afford it. They are currently waiting to hear from the landlord (who lives in Australia), but are hoping to move in at the start of March.
And F was due to come round on Mon eve, but didn't turn up. That was the second time she'd arranged to come round. The first time she didn't make it because she was ill, but forgot to contact me to let me know. And then on Mon something came up so she couldn't make it, but I didn't find out until I text her after she was due to have come. Again she forgot to contact me. But I don't know the circumstances, so can't blame her. I was disappointed though.
Yesterday I didn't manage to do much because I was so tired. I watched a lot of TV. We found out that my nan is still in hospital because she's got diarrhoea. The doctors don't yet know why, so have delayed her discharge til she's better. Until we know the cause we can't risk visiting her at the moment just in case one of us was to pick something up, as tummy bugs can be very dangerous for me. Hopefully she'll feel better soon.
I have to have a go at putting together a draft CV before I see someone at Pathways to Work in a couple of weeks to help me put a proper one together. Chris is great with CVs (his makes people believe he has voluntarily left all the jobs he has been fired from, lol!), so he's emailed me his to have a look at and said to contact him if I need any help. So that is going to be one of my jobs for the next week or so.
As you know my mum works in the village library. There is only her and one other regular member of staff, but they have some relief staff in case they are ill etc. One of the relief staff is called A and my mum and many other people refer to her as Saint A. Saint A is very odd, very religious, calls her parents 'Mummy' and 'Daddy' despite being quite old (maybe in her 50s) and believes everyone loves her but every time she works in the library she ends up upsetting all the customers! For some reason she is currently in the process of setting up a discussion group for teenagers (over 15s) in the village. I'm not sure how often it will take place but the first session is one Friday eve at the start of Feb and I've got an invite. And hilariously, so has Alf! There isn't much for teenagers to do in the village, but we're not that desperate! I haven't actually seen the invite yet because mum has left it at work, but I was talking to a friend, V, who has also got an invite and apparently there will also be bread and soup available at the group. Mum says that it is mostly teenagers that Saint A knows from church who have been invited, but it's not a religuous discussion group - thank goodness. V is desperately trying to think up a good excuse to get out of it and so I'm not going if she's not going because I don't fancy it on my own but it might be a laugh together. So I'll let you know what V decides to do. Alf has already said no chance.
On Sun I was supposed to start keeping a diary of my food intake and tummy pains for a week for my dietician, but I forgot, so started on Mon instead. Keeping the diary is going ok, but it's sod's law, now I'm recording everything my tummy pains aren't nearly as frequent, long lasting or painful! Grrr.
My weight on Tue morn was 50.9kg. I can't stop feeds til I reach 51kg. The previous week I was 50.8kg, so fingers crossed I'll be 51kg next Tue. I'm still trying the various high calorie supplements. I've had another (my third and final) strawberry pudding and I don't mind those so am going to contact the pharmacy at my GP surgery tomorrow (I tried today but for some reason they were shut) to see if they can order me some more in. I started a yoghurt style Fortisip drink yesterday but then thought that I had better check with my dietician that I was ok to eat it because I have to avoid most youghurts because they contain probiotics, which could be dangerous to me because I've had a small bowel transplant. My dietician said that they are fine for me to drink, but that one has been open for too long now, so I'll try the other one tomorrow. I'm not at all keen on the flavours (vanilla & lemon and raspberry) but am going to try to judge it on the texture and then if that's ok I'll enquire about different flavours.
I've been catching up with some emails and letters over the last couple of days and seem to be on top of them now. This morning I got a lovely card and letter from Kate, my AYME buddy. She's having a tough time at the moment with her health, so I've written her a letter today and hope to get that in the post to her soon.
It's been snowing here for most of the day, but interspersed with rain and sleet, so none of it has settled. I'm feeling better today than I did Mon aft and yesterday, despite possibly having the start of a cold. My mum isn't well enough to go out the cinema tonight, but me and Claire are still hoping to go together to see St Trinians :)
I've recently heard that Mika's next single to be released in the UK will be Blame it on the Girls. I love this song and was disappointed when it was released in the USA and Japan at the end of last year, but we got Rain here instead (which is good, but not as good in my opinion). I've already heard Blame it on the Girls being played on the radio already even though it's not going to be released til Feb and it cheers me up every time I hear it :)
In my last blog update I mentioned that Ellie Goulding who I'd seen supporting Little Boots had been named as the BBC's Sound of 2010. She released the great Under The Sheets last year. Since then mum told me that she'd heard a song of hers called Starry Eyes on the radio a couple of times, so I looked it up and found out that it will be her next single which will be released in Feb before her debut album in March. I really like it and can remember her performing it when we saw her live. And a friend pointed me to an interesting cover that Ellie Goulding has done of Sam Sparrow's Black and Gold.
Another artist on the BBC's Sound of 2010 list is Owl City. I don't know much about him, but have heard Fireflies on the music channels a few times this week and really like it.
And Justin Bieber (who we saw supporting Taylor Swift in November) keeps popping up on the music channels with his latest video, One Time. I'm not a fan though.
Since my last update me and mum managed to finish watching Pride and Prejudice (the Kiera Knightley version). I didn't really like it though and wouldn't watch it again. And I've watched 27 Dresses which I enjoyed. I also attemped to watch Magagascar 2 yesterday, but couldn't follow it because I was so tired. I'll try again another time.
On DVD I've watched 3 and a half episodes of the Vicar of Dibley and 2 episodes of Gavin and Stacey. And one of my rental DVDs that came is an S Club 7 one (I used to love them), with interviews and music videos. I watched the interviews yesterday and am looking forward to watching the music videos because I don't think I've actually seen many of them.
And I've watched a bit on TV too. When I'm tired the music channels are always easy to watch. And today I watched an old Jools Holland we'd recorded but not watched yet that featured Ellie Goulding :) On our hard disc recorder I also discovered a special edition of the Culture Show from a few months ago which was celebrating 20 years of Wallace and Gromit, so I enjoyed watching that. I also watched the brilliant Nurse Jackie, Film 2010 (I was disappointed that Sandra Bullock's latest film got such an awful review), Channel 4's Bodyshock: Girl Who Cries Blood and half of an episode of Wanted Down Under until I got bored.
Although I only knew Jess through friends, her death last night has really got me thinking. I wrote a brief blog post about her death here, but might write more in my next blog once my thoughts make a bit more sense.
Tuesday, 5 January 2010
My week
Sorry I've not updated for a week, this update might be a bit long but I'll try not to ramble too much! :P In between blog updates I save rough notes of what I've been doing so I can remember what to write about when I come to publish my next blog update. My notes for this week look quite overwhelming, but I know the longer I leave it the more daunting it'll get! So I'm currently listening to a Radio 2 programme on iPlayer presented by Mika (you can listen here) and I'll attempt to write a blog update that makes sense :)
On Wed after I'd written my last update, one of the liver nurses from Hosp B phoned me back. The nurse I spoke to said that my consultant was away so she couldn't ask him why I needed the heart scans and she didn't know the answer. But my blood results looked good. She asked me to phone back on Mon (yesterday) to remind her to ask my consultant about the scans when he was back in, so I did. I also asked some more questions - what were my biopsy and kidney test results from my MOT last month and did my scopes show any causes for my tummy pains, what was my latest Tac level, what should my Tac dose now be and when do I next need bloods repeating? The nurse I spoke to said that my last Tac level was 8.2 (my target level is 5 to 8) so she didn't think that my dose would need to be altered. And she said she'd put the other questions either to Dr G (my consultant) or Dr B (another consultant I know) at the weekly meeting on Wed and they'd phone me back as soon as they had some answers for me.
My Tac level had previously been stable for a long time and so my dose had stayed the same. But as my dose was doubled a couple of weeks ago, a few days ago I was putting out my tablets for the week and realised I was running very short on Tac. I get all the rest of my tablets from my local pharmacy, but my Tac is delivered by a healthcare company. I knew I didn't have a delivery coming up, so yesterday I phoned them and explained that my dose had recently been doubled and so I only had 12 days worth of Tac left. I thought it would be simple to get some more sent out, but no. They asked who had changed my Tac dose, so I said Hosp B, and I was then told that they would have to send some paperwork to Hosp B for them to confirm that they had in fact doubled my dose! Then once the paperwork is sorted they'll be able to phone me up to arrange a Tac delivery. I stressed that I only had 12 days of Tac left, so hopefully I'll get a delivery in time! Fingers crossed.
Last week my dietician confirmed that my feed plan was still the same (stay on 3 nights of overnight feed til my weight reaches 51kg and then try without feeds) and said that the new high calorie drinks and puddings for me to try should be delivered soon. I suspect that my current high calorie drinks are still making my tummy worse even though I'm now drinking them more slowly and diluted with cow's milk.
In response to my question about trying excluding foods from my diet, my dieitican was worried that this might make me more reliant on overnight feeds, so suggested that first I should try keeping a food and symptom diary for a week. I'm going to start this diary next Sun and my mum is going to help me with it - in it I'll record what I eat and drink, times, amounts, ingredients and cooking methods. And I'll record every tummy pain I get. Hopefully the diary will show some sort of pattern to my tummy pains and maybe suggest what is triggering them.
I weighed myself again this morning and my weight was up slightly to 50.8kg. So I'll stay on my overnight feeds for now, but my weight is getting close to 51kg :)
My nocturnalism was a bit more extreme than usual Sat night and Sun night, I got to sleep around 2am both nights! But last night I made a huge effort to get into bed earlier and I think I fell asleep around midnight :) I've been getting up between 10am and 11.30am most mornings but managed to get up just before 10am this morning. So fingers crossed I'll be able to keep this better sleep pattern up.
There has been lots of news on friends in the transplant community this week. In this update I said that Imogen had received her call. I've not heard any news since because I'm not in touch with Imy's parents, just her. So I wont hear anything until she's feeling well enough to text. I might try phoning her hospital though (which is a different hospital to mine) to see how she is. I'm not sure if they'll be able to tell me anything though. And we have one mutual friend, so I've asked her if she knows anything.
And yesterday morning I gave this update on M and Jess. After I posted that yesterday I heard more from M's mum. M's breathing continued to improve so she's now off the oscillator and just on a ventilator :) She's losing a lot of blood from her bowel though so the doctors were thinking of taking her to theatre today to try to slow the blood loss. But because the rejection can't be got under control M is going to have to have her bowel removed in theatre in the next few days and then at some point she'll have to be relisted for a second transplant :(
Jess is stable and managed to get out of bed and sit in a chair (with assistance) yesterday :)
I had a very busy day on Thursday. I had to get up at 8.30am and set off for the orthodontist (at Hosp A) at 9.30am. My orthodontist wasn't as rude as he normally is and talked to me to tell me what he was doing. He was happy with my progress so swapped my wires for some slightly thicker and less flexible ones. And he showed me how to use little elastic bands in my mouth too. Together the new wires and the elastic bands should help to close the gaps from my extractions in the summer. My teeth are now straight, so once the gaps are closed that'll be my orthodontic treatment finished. My mum asked how long he expects that to take and he said that as long as I wear the elastics properly then it should just take 6 months! I'm very happy with that because I've only had my braces for 9 months and was originally told I'd need them for 18 to 24 months, so if I just have them for another 6 months then that's not as long as I'd expected :) I can't wait to get rid of them because without them eating should be easier and people will hopefully stop thinking I'm 15 or 16!
The elastic bands felt very odd to start with in my mouth because I wear 2 at a time and each one goes from a tooth in my top jaw to a tooth in my bottom jaw. I was told I needed to wear them for at least 18 hours a day, but am wearing them for almost 24 hours a day with no problems. They do sometimes snap or ping off when I'm eating though and I think I've swallowed at least one so far! :P And the tighter wires made my mouth very sore for a few days, especially when I ate, so I was taking Paracetamol regularly for a few days. But my mouth is feeling much better now :)
After my orthodontist appt on Thur morning me and mum got a bus into the city centre. We had baked potatoes for lunch and then went round the shops to look for me some boots. I think my feet must be very odd shaped because I tried loads of boots on which didn't fit. And the size of my feet seemed different in each shop - ranging from 3 and a half to 5 and a half! Most annoying were the shops where the size 4 boots were too small and the size 5 boots were too big, but they didn't do half sizes. Eventually I found a lovely pair of boots which seemed to fit much better. What do you think of them? I bought them although I've never spent that much on footwear before! I've not worn them outside yet, I'm going to wear them for a bit around the house first to make sure that they fit comfortably.
On Thur night I didn't do anything to celebrate New Year. Alf went out with his friends, but I just stayed at home with my parents and we stayed up watching TV til about 1am. At about quarter to midnight on New Years Eve dad told me that exactly 20 years ago I'd been conceived! Not sure that I needed to know that!
After such a busy day on Thur I was exhausted. I expected that but didn't expect that I'd feel so awful on Fri, Sat and Sun! So I didn't do much at all. I felt a bit better yesterday morning but after helping my mum sort out her photos on the computer (I put them into more sensible folders than the automatic computer ones so she can find them) and loading some of them onto the knitting social networking website that she uses, I felt exhausted! So I didn't feel up to going out with mum to visit my Nan in hospital yesterday. Hopefully we'll go and visit her this afternoon though. Still no news on what the problem is, but I think she's stopped having the dizzy spells now.
On Wed I received a Christmas present from my friend H. We didn't manage to meet up over Christmas but because both of our mums work in libraries in the county we wrapped each other's presents up, disguised them as important library stuff and then sent them with the library deliveries! And it worked. H got my present just before Christmas but she sent hers a bit late, so I received it last week. It was a very pretty red and puple cushion. I didn't think it'd go in my blue and purple room, but it does :)
My mum's birthday isn't til March, but I was looking on Amazon on Sunday and found 2 DVDs I thought she'd love so I bought them for her :) I bought her Paint Your Wagon, because she loves that film but only has it on VHS not DVD, and the complete collection of Dinnerladies because she really enjoys watching old episodes of it when they're on TV and really likes Victoria Wood. So that's mum's birthday presents sorted :) I've got a few people's birthdays coming up in the next few months so am trying to get organised with presents - it's my cousin Tam's birthday mid Feb, mum, Alf and Lizzy's birthdays in the first week of March and Claire's birthday in April. And mother's day in March too.
I heard from my friend F on Sunday. She asked if she could pop round yesterday with my Christmas present, so I said yes. Then I realised that I'd not been expecting a Christmas present from her, so hadn't bought her anything! But I found a lovely incense gift box in my present drawer so wrapped that up for her :) F didn't make it round yesterday because she was ill, but is hoping to pop round later in the week when she feels better.
Me and mum took all the Christmas decorations down on Saturday. It's sad now Christmas is over for another year. There's always such a big build-up to Christmas and then suddenly it happens and is all over! :(
My uncle (dad's brother) phoned up this morning and asked me to give a message to my dad. My uncle was supposed to be visiting my Nan's house today to try to sort her out with a new bed because I think her current bed is too high. But my uncle said he couldn't do it because he was snowed in. He only lives about 20 miles away, yet he's snowed in and we've got no snow at all! I've just seen lots of messages on Facebook about snow and saw the news about all the chaos it's causing, but we've not got any at all. And the Met Office forecast doesn't predict we'll get much at all.
I mentioned on my last blog update that I'd been thinking about getting a hobby and felt very inspired. On Wednesday evening I went through some of the big plastic boxes under my bed that are filled with craft stuff and also looked at some craft websites that friends had recommended. After my busy day on Thur I felt awful so haven't really had the energy to get excited about it since. But I will get myself a hobby.
I've continued looking at what the iTunes 12 Days of Christmas offer is giving away each day. Most of the downloads I've either not wanted or have been applications that wouldn't work on my iPod classic. In my last update I said I'd downloaded 2 music videos (a live Robbie Williams performance and a JLS music video), but they'd been slow to download with our Internet connection. Since then I've downloaded a 30 minute episode of Outnumbered (which I've never seen, but Outnumbered is supposed to be good) and a short film called Peter And The Wolf (which had good reviews). I've not got round to watching either of them yet though. Outnumbered took absolutely ages to download. I started downloading it about midday and when I went to bed about 12 hours later it still hadn't finished so I left my laptop on and it finished downloading overnight. And I started downloading Peter And The Wolf just after midnight one night and left my laptop on when I went to bed so it finished downloading overnight.
Because I've had a few days where I've felt awful this week, I've watched a lot of TV and DVDs.
The films I've watched are:
~ Miss Congeniality 2 - which I quite liked but it isn't nearly as good as the original Miss Congeniality. I love Sandra Bullock :)
~ 17 Again - I was surprised at how good it was, but it was very American
~ Raising Helen - This is a great film and I'd recommend if you've not seen it. This also has one of my favourite actresses in it, Abigail Breslin, but she was very little (and very cute) when this film was made.
~ Pride and Prejudice - I started watching this with mum yesterday but struggled to follow the dialogue because I wasn't feeling too good. We'll finish it together soon. I quite like Kiera Knightley. And I was surprised to spot Carey Mulligan (from the Doctor Who episode Blink and the film An Education) in it. Keep an eye out for her, she's going to be huge.
And the Julia Roberts boxset that I bought from Amazon arrived yesterday so I'm looking forward to watching some of those films. And I looked through lots of old Radio Times magazines and picked out the interesting looking films to add to my rental list. St Trinians has just been posted out to me, so I'm looking forward to watching that when it arrives because I've not seen it yet.
The Gavin and Stacey DVD I persuaded mum to buy arrived in the post last week so we've watched 4 episodes of it so far. We all really like it, so it's great to have found a programme we all enjoy watching together :) And we've ordered the 2nd and 3rd series on DVD from the library. I've also watched one episode from the first series of Dragon's Den as I'm renting that at the moment. And I've watched 8 more episodes (plus some out-takes) of Absolutely Fabulous this week :D
And on TV I've watched:
~ The episode of Absolutely Fabulous titled Gay - it was on TV last week. I loved it but I'm a big fan of Absolutely Fabulous and over the last few months have watched almost every single episode :)
~ 3 Men Go To Ireland- the first episode was very funny. I've not watched the second episode yet though.
~ New Year Top Of The Pops - it was ok, but some of the performances were repeated from the Christmas special which I'd watched.
~ Jools's Annual Hootenanny - I didn't enjoy all of it, but some of it was good. I especially liked Boy George performing Karma Chameleon and Shingai (from the Noisettes) performing Don't Upset the Rhythm. Can't wait to see The Noisettes in concert next month :)
~ Who Do You Think You Are with Julia Sawalha - it was quite interesting, but I wanted to know a bit more about Julia (who I like from Absolutely Fabulous).
~ Doctor Who: The End of Time Part 2 - I struggled to follow it because I was feeling really rotten that day. What I understood I liked though. I'm not keen on what I've seen of the new doctor so far, I don't think he'll be as good as David Tennant.
~ Alan Titchmarsh Show - I'd recorded this episode before Christmas but skimmed through it to see Pixie Lott performing.
~ Film 2009 - this was all about the films of the year and was interesting.
~ Great British Railway Journeys - I watched the first episode of this with mum last night because she loves trains and railways. Disappointingly though, not much of the content was actually about railways.
~ Nurse Jackie - I watched the first episode of this last night to see if it was any good. And I'm not sure. I didn't think it was very funny though. Think I might have to watch tonight's episode too and then see what I think.
~ Wanted Down Under - I don't usually watch daytime TV, but watched one episode of this this week. I've watched it before when it's been on because I quite like the idea of visiting Australia. I used to want to live there, but I don't think I do any more.
On Wed after I'd written my last update, one of the liver nurses from Hosp B phoned me back. The nurse I spoke to said that my consultant was away so she couldn't ask him why I needed the heart scans and she didn't know the answer. But my blood results looked good. She asked me to phone back on Mon (yesterday) to remind her to ask my consultant about the scans when he was back in, so I did. I also asked some more questions - what were my biopsy and kidney test results from my MOT last month and did my scopes show any causes for my tummy pains, what was my latest Tac level, what should my Tac dose now be and when do I next need bloods repeating? The nurse I spoke to said that my last Tac level was 8.2 (my target level is 5 to 8) so she didn't think that my dose would need to be altered. And she said she'd put the other questions either to Dr G (my consultant) or Dr B (another consultant I know) at the weekly meeting on Wed and they'd phone me back as soon as they had some answers for me.
My Tac level had previously been stable for a long time and so my dose had stayed the same. But as my dose was doubled a couple of weeks ago, a few days ago I was putting out my tablets for the week and realised I was running very short on Tac. I get all the rest of my tablets from my local pharmacy, but my Tac is delivered by a healthcare company. I knew I didn't have a delivery coming up, so yesterday I phoned them and explained that my dose had recently been doubled and so I only had 12 days worth of Tac left. I thought it would be simple to get some more sent out, but no. They asked who had changed my Tac dose, so I said Hosp B, and I was then told that they would have to send some paperwork to Hosp B for them to confirm that they had in fact doubled my dose! Then once the paperwork is sorted they'll be able to phone me up to arrange a Tac delivery. I stressed that I only had 12 days of Tac left, so hopefully I'll get a delivery in time! Fingers crossed.
Last week my dietician confirmed that my feed plan was still the same (stay on 3 nights of overnight feed til my weight reaches 51kg and then try without feeds) and said that the new high calorie drinks and puddings for me to try should be delivered soon. I suspect that my current high calorie drinks are still making my tummy worse even though I'm now drinking them more slowly and diluted with cow's milk.
In response to my question about trying excluding foods from my diet, my dieitican was worried that this might make me more reliant on overnight feeds, so suggested that first I should try keeping a food and symptom diary for a week. I'm going to start this diary next Sun and my mum is going to help me with it - in it I'll record what I eat and drink, times, amounts, ingredients and cooking methods. And I'll record every tummy pain I get. Hopefully the diary will show some sort of pattern to my tummy pains and maybe suggest what is triggering them.
I weighed myself again this morning and my weight was up slightly to 50.8kg. So I'll stay on my overnight feeds for now, but my weight is getting close to 51kg :)
My nocturnalism was a bit more extreme than usual Sat night and Sun night, I got to sleep around 2am both nights! But last night I made a huge effort to get into bed earlier and I think I fell asleep around midnight :) I've been getting up between 10am and 11.30am most mornings but managed to get up just before 10am this morning. So fingers crossed I'll be able to keep this better sleep pattern up.
There has been lots of news on friends in the transplant community this week. In this update I said that Imogen had received her call. I've not heard any news since because I'm not in touch with Imy's parents, just her. So I wont hear anything until she's feeling well enough to text. I might try phoning her hospital though (which is a different hospital to mine) to see how she is. I'm not sure if they'll be able to tell me anything though. And we have one mutual friend, so I've asked her if she knows anything.
And yesterday morning I gave this update on M and Jess. After I posted that yesterday I heard more from M's mum. M's breathing continued to improve so she's now off the oscillator and just on a ventilator :) She's losing a lot of blood from her bowel though so the doctors were thinking of taking her to theatre today to try to slow the blood loss. But because the rejection can't be got under control M is going to have to have her bowel removed in theatre in the next few days and then at some point she'll have to be relisted for a second transplant :(
Jess is stable and managed to get out of bed and sit in a chair (with assistance) yesterday :)
I had a very busy day on Thursday. I had to get up at 8.30am and set off for the orthodontist (at Hosp A) at 9.30am. My orthodontist wasn't as rude as he normally is and talked to me to tell me what he was doing. He was happy with my progress so swapped my wires for some slightly thicker and less flexible ones. And he showed me how to use little elastic bands in my mouth too. Together the new wires and the elastic bands should help to close the gaps from my extractions in the summer. My teeth are now straight, so once the gaps are closed that'll be my orthodontic treatment finished. My mum asked how long he expects that to take and he said that as long as I wear the elastics properly then it should just take 6 months! I'm very happy with that because I've only had my braces for 9 months and was originally told I'd need them for 18 to 24 months, so if I just have them for another 6 months then that's not as long as I'd expected :) I can't wait to get rid of them because without them eating should be easier and people will hopefully stop thinking I'm 15 or 16!
The elastic bands felt very odd to start with in my mouth because I wear 2 at a time and each one goes from a tooth in my top jaw to a tooth in my bottom jaw. I was told I needed to wear them for at least 18 hours a day, but am wearing them for almost 24 hours a day with no problems. They do sometimes snap or ping off when I'm eating though and I think I've swallowed at least one so far! :P And the tighter wires made my mouth very sore for a few days, especially when I ate, so I was taking Paracetamol regularly for a few days. But my mouth is feeling much better now :)
After my orthodontist appt on Thur morning me and mum got a bus into the city centre. We had baked potatoes for lunch and then went round the shops to look for me some boots. I think my feet must be very odd shaped because I tried loads of boots on which didn't fit. And the size of my feet seemed different in each shop - ranging from 3 and a half to 5 and a half! Most annoying were the shops where the size 4 boots were too small and the size 5 boots were too big, but they didn't do half sizes. Eventually I found a lovely pair of boots which seemed to fit much better. What do you think of them? I bought them although I've never spent that much on footwear before! I've not worn them outside yet, I'm going to wear them for a bit around the house first to make sure that they fit comfortably.
On Thur night I didn't do anything to celebrate New Year. Alf went out with his friends, but I just stayed at home with my parents and we stayed up watching TV til about 1am. At about quarter to midnight on New Years Eve dad told me that exactly 20 years ago I'd been conceived! Not sure that I needed to know that!
After such a busy day on Thur I was exhausted. I expected that but didn't expect that I'd feel so awful on Fri, Sat and Sun! So I didn't do much at all. I felt a bit better yesterday morning but after helping my mum sort out her photos on the computer (I put them into more sensible folders than the automatic computer ones so she can find them) and loading some of them onto the knitting social networking website that she uses, I felt exhausted! So I didn't feel up to going out with mum to visit my Nan in hospital yesterday. Hopefully we'll go and visit her this afternoon though. Still no news on what the problem is, but I think she's stopped having the dizzy spells now.
On Wed I received a Christmas present from my friend H. We didn't manage to meet up over Christmas but because both of our mums work in libraries in the county we wrapped each other's presents up, disguised them as important library stuff and then sent them with the library deliveries! And it worked. H got my present just before Christmas but she sent hers a bit late, so I received it last week. It was a very pretty red and puple cushion. I didn't think it'd go in my blue and purple room, but it does :)
My mum's birthday isn't til March, but I was looking on Amazon on Sunday and found 2 DVDs I thought she'd love so I bought them for her :) I bought her Paint Your Wagon, because she loves that film but only has it on VHS not DVD, and the complete collection of Dinnerladies because she really enjoys watching old episodes of it when they're on TV and really likes Victoria Wood. So that's mum's birthday presents sorted :) I've got a few people's birthdays coming up in the next few months so am trying to get organised with presents - it's my cousin Tam's birthday mid Feb, mum, Alf and Lizzy's birthdays in the first week of March and Claire's birthday in April. And mother's day in March too.
I heard from my friend F on Sunday. She asked if she could pop round yesterday with my Christmas present, so I said yes. Then I realised that I'd not been expecting a Christmas present from her, so hadn't bought her anything! But I found a lovely incense gift box in my present drawer so wrapped that up for her :) F didn't make it round yesterday because she was ill, but is hoping to pop round later in the week when she feels better.
Me and mum took all the Christmas decorations down on Saturday. It's sad now Christmas is over for another year. There's always such a big build-up to Christmas and then suddenly it happens and is all over! :(
My uncle (dad's brother) phoned up this morning and asked me to give a message to my dad. My uncle was supposed to be visiting my Nan's house today to try to sort her out with a new bed because I think her current bed is too high. But my uncle said he couldn't do it because he was snowed in. He only lives about 20 miles away, yet he's snowed in and we've got no snow at all! I've just seen lots of messages on Facebook about snow and saw the news about all the chaos it's causing, but we've not got any at all. And the Met Office forecast doesn't predict we'll get much at all.
I mentioned on my last blog update that I'd been thinking about getting a hobby and felt very inspired. On Wednesday evening I went through some of the big plastic boxes under my bed that are filled with craft stuff and also looked at some craft websites that friends had recommended. After my busy day on Thur I felt awful so haven't really had the energy to get excited about it since. But I will get myself a hobby.
I've continued looking at what the iTunes 12 Days of Christmas offer is giving away each day. Most of the downloads I've either not wanted or have been applications that wouldn't work on my iPod classic. In my last update I said I'd downloaded 2 music videos (a live Robbie Williams performance and a JLS music video), but they'd been slow to download with our Internet connection. Since then I've downloaded a 30 minute episode of Outnumbered (which I've never seen, but Outnumbered is supposed to be good) and a short film called Peter And The Wolf (which had good reviews). I've not got round to watching either of them yet though. Outnumbered took absolutely ages to download. I started downloading it about midday and when I went to bed about 12 hours later it still hadn't finished so I left my laptop on and it finished downloading overnight. And I started downloading Peter And The Wolf just after midnight one night and left my laptop on when I went to bed so it finished downloading overnight.
Because I've had a few days where I've felt awful this week, I've watched a lot of TV and DVDs.
The films I've watched are:
~ Miss Congeniality 2 - which I quite liked but it isn't nearly as good as the original Miss Congeniality. I love Sandra Bullock :)
~ 17 Again - I was surprised at how good it was, but it was very American
~ Raising Helen - This is a great film and I'd recommend if you've not seen it. This also has one of my favourite actresses in it, Abigail Breslin, but she was very little (and very cute) when this film was made.
~ Pride and Prejudice - I started watching this with mum yesterday but struggled to follow the dialogue because I wasn't feeling too good. We'll finish it together soon. I quite like Kiera Knightley. And I was surprised to spot Carey Mulligan (from the Doctor Who episode Blink and the film An Education) in it. Keep an eye out for her, she's going to be huge.
And the Julia Roberts boxset that I bought from Amazon arrived yesterday so I'm looking forward to watching some of those films. And I looked through lots of old Radio Times magazines and picked out the interesting looking films to add to my rental list. St Trinians has just been posted out to me, so I'm looking forward to watching that when it arrives because I've not seen it yet.
The Gavin and Stacey DVD I persuaded mum to buy arrived in the post last week so we've watched 4 episodes of it so far. We all really like it, so it's great to have found a programme we all enjoy watching together :) And we've ordered the 2nd and 3rd series on DVD from the library. I've also watched one episode from the first series of Dragon's Den as I'm renting that at the moment. And I've watched 8 more episodes (plus some out-takes) of Absolutely Fabulous this week :D
And on TV I've watched:
~ The episode of Absolutely Fabulous titled Gay - it was on TV last week. I loved it but I'm a big fan of Absolutely Fabulous and over the last few months have watched almost every single episode :)
~ 3 Men Go To Ireland- the first episode was very funny. I've not watched the second episode yet though.
~ New Year Top Of The Pops - it was ok, but some of the performances were repeated from the Christmas special which I'd watched.
~ Jools's Annual Hootenanny - I didn't enjoy all of it, but some of it was good. I especially liked Boy George performing Karma Chameleon and Shingai (from the Noisettes) performing Don't Upset the Rhythm. Can't wait to see The Noisettes in concert next month :)
~ Who Do You Think You Are with Julia Sawalha - it was quite interesting, but I wanted to know a bit more about Julia (who I like from Absolutely Fabulous).
~ Doctor Who: The End of Time Part 2 - I struggled to follow it because I was feeling really rotten that day. What I understood I liked though. I'm not keen on what I've seen of the new doctor so far, I don't think he'll be as good as David Tennant.
~ Alan Titchmarsh Show - I'd recorded this episode before Christmas but skimmed through it to see Pixie Lott performing.
~ Film 2009 - this was all about the films of the year and was interesting.
~ Great British Railway Journeys - I watched the first episode of this with mum last night because she loves trains and railways. Disappointingly though, not much of the content was actually about railways.
~ Nurse Jackie - I watched the first episode of this last night to see if it was any good. And I'm not sure. I didn't think it was very funny though. Think I might have to watch tonight's episode too and then see what I think.
~ Wanted Down Under - I don't usually watch daytime TV, but watched one episode of this this week. I've watched it before when it's been on because I quite like the idea of visiting Australia. I used to want to live there, but I don't think I do any more.
Wednesday, 30 December 2009
2009 Meme
Thanks Posh Totty for this meme :)
1. What did you do in 2009 that you'd never done before? ... Managed for 6 months without artificial feeds. And I went away with school for 10 days without any artificial feeds and without my parents :D
2. Did you keep your new years' resolutions, and will you make more for next year? .... I don't think I made any this year. I'm not sure I'll make any resolutions for next year, but I do have hopes that you can see on this blog post.
3. How will you be spending New Year's Eve? ... I will be spending the afternoon at the orthodontist :( I was invited to a sixth form meet-up that night, but am not well enough to go so will probably spend the night at home watching TV.
4. Did anyone close to you die? ... No
5. What countries did you visit? ... Japan :D
6. What would you like to have in 2010 that you lacked in 2009? ... More energy
7. What date from 2009 will remain etched upon your memory, and why? ... That's a hard question, I really don't know about a specific date, but my memories of Japan will stay with me.
8. What was your biggest achievement of the year? ... Completing my International Baccalaureate Certificates :)
9. What was your biggest failure? ... At the time dropping maths at school seemed like a failure, but looking back on it dropping a subject was the only way I could keep going at school while I was ill. And I'm really disappointed that I wasn't photographed for the Gifts of Life photography exhibition, but that was out of my control.
10. Did you suffer illness or injury? ... Yup, ME. But that was ongoing from 2008.
11. What was the best thing you bought? ... A sofa and bigger TV (with an inbuilt DVD player) for my bedroom. And my new laptop :D
12. Where did most of your money go? ... DVDs
13. What song will always remind you of 2009? ... I'm not sure about specific songs, but I've enjoyed discovering some fantastic albums this year including 'Funhouse' by Pink, 'It's Not Me It's You' by Lily Allen 'Hands' by Little Boots, 'Taylor Swift' and 'Fearless' by Taylor Swift, 'The Boy Who Knew Too Much' by Mika, 'Turn It Up' by Pixie Lott and 'Overcome' by Alexandra Burke.
14. What do you wish you'd done more of? ... I know I should have rested more to stop my ME getting worse, but I can't just do nothing.
15. What do you wish you'd done less of? .... I know I shouldn't have overdone it so much, which lead to my ME getting worse. But what would I have missed out on then?
16. What was your favourite TV program? ... I rediscovered Absolutely Fabulous on DVD. And Ashes to Ashes series 2 was great.
17. Do you hate anyone now that you didn't hate this time last year? ... Don't think so.
18. What was the best book you read? ... I've not been able to read novels this year because of my poor concentration and memory :(
19. What was your greatest musical discovery? ... Taylor Swift, Little Boots and Pixie Lott.
20. What was your favourite film of this year? ... At the cinema - The Proposal, My Sister's Keeper. The Hangover and Up 3D I think. And of course, how could I forget Coraline! :D I've watched loads of DVDs too, but can't remember specifics. Recently I've really enjoyed watching Memoirs of a Geisha and Girl Interrupted though.
21. What did you do on your birthday? ... Claire came round so I spent the day with her and my family watching DVDs, playing games and Dad cooked tea on a BBQ. I also took Claire to meet my nan for the first time.
22. What kept you sane? ... My family and friends
23. Who did you miss? ... I often miss my best friend Lizzy because she lives 80 miles away so I'm not able to see her as often as I'd like to.
24. Who was the best new person you met? ... I can't just name one, but I've met some amazing people though the online ME communities I've joined.
25. Tell us a valuable life lesson you learned in 2009: ... ME is frustrating, but it's not the end of the world. It won't kill me and I will get better, I just don't know when, so need to try to be more patient til then.
1. What did you do in 2009 that you'd never done before? ... Managed for 6 months without artificial feeds. And I went away with school for 10 days without any artificial feeds and without my parents :D
2. Did you keep your new years' resolutions, and will you make more for next year? .... I don't think I made any this year. I'm not sure I'll make any resolutions for next year, but I do have hopes that you can see on this blog post.
3. How will you be spending New Year's Eve? ... I will be spending the afternoon at the orthodontist :( I was invited to a sixth form meet-up that night, but am not well enough to go so will probably spend the night at home watching TV.
4. Did anyone close to you die? ... No
5. What countries did you visit? ... Japan :D
6. What would you like to have in 2010 that you lacked in 2009? ... More energy
7. What date from 2009 will remain etched upon your memory, and why? ... That's a hard question, I really don't know about a specific date, but my memories of Japan will stay with me.
8. What was your biggest achievement of the year? ... Completing my International Baccalaureate Certificates :)
9. What was your biggest failure? ... At the time dropping maths at school seemed like a failure, but looking back on it dropping a subject was the only way I could keep going at school while I was ill. And I'm really disappointed that I wasn't photographed for the Gifts of Life photography exhibition, but that was out of my control.
10. Did you suffer illness or injury? ... Yup, ME. But that was ongoing from 2008.
11. What was the best thing you bought? ... A sofa and bigger TV (with an inbuilt DVD player) for my bedroom. And my new laptop :D
12. Where did most of your money go? ... DVDs
13. What song will always remind you of 2009? ... I'm not sure about specific songs, but I've enjoyed discovering some fantastic albums this year including 'Funhouse' by Pink, 'It's Not Me It's You' by Lily Allen 'Hands' by Little Boots, 'Taylor Swift' and 'Fearless' by Taylor Swift, 'The Boy Who Knew Too Much' by Mika, 'Turn It Up' by Pixie Lott and 'Overcome' by Alexandra Burke.
14. What do you wish you'd done more of? ... I know I should have rested more to stop my ME getting worse, but I can't just do nothing.
15. What do you wish you'd done less of? .... I know I shouldn't have overdone it so much, which lead to my ME getting worse. But what would I have missed out on then?
16. What was your favourite TV program? ... I rediscovered Absolutely Fabulous on DVD. And Ashes to Ashes series 2 was great.
17. Do you hate anyone now that you didn't hate this time last year? ... Don't think so.
18. What was the best book you read? ... I've not been able to read novels this year because of my poor concentration and memory :(
19. What was your greatest musical discovery? ... Taylor Swift, Little Boots and Pixie Lott.
20. What was your favourite film of this year? ... At the cinema - The Proposal, My Sister's Keeper. The Hangover and Up 3D I think. And of course, how could I forget Coraline! :D I've watched loads of DVDs too, but can't remember specifics. Recently I've really enjoyed watching Memoirs of a Geisha and Girl Interrupted though.
21. What did you do on your birthday? ... Claire came round so I spent the day with her and my family watching DVDs, playing games and Dad cooked tea on a BBQ. I also took Claire to meet my nan for the first time.
22. What kept you sane? ... My family and friends
23. Who did you miss? ... I often miss my best friend Lizzy because she lives 80 miles away so I'm not able to see her as often as I'd like to.
24. Who was the best new person you met? ... I can't just name one, but I've met some amazing people though the online ME communities I've joined.
25. Tell us a valuable life lesson you learned in 2009: ... ME is frustrating, but it's not the end of the world. It won't kill me and I will get better, I just don't know when, so need to try to be more patient til then.
Monday, 7 December 2009
Getting organised for Christmas and nan
My sleep pattern is very messed up again :( Since my last update I've fallen asleep at 2am, 2am, 3am and 1am. And in the mornings I've got up between 10am and 11.30am. I'm really struggling to get up in the mornings and so am missing most of each morning as a result :( Usually the only reason I eventually get up is because I need to take my morning tablets! And so I just seem to be exhausted at the mo. But my tummy aches seem a bit better without eating rice :)
On Thur we had a new tumble dryer delivered. Mum is very happy that she can now dry clothes in the winter as our old tumble dryer broke ages ago! And Thur was also dad's 60th birthday! We had a nice evening when he got back in from work and mum cooked him fish soup for a birthday tea. Me and Alf had pasta though as we didn't fancy the fish soup :P Dad liked his presents - a Neil Young DVD from me, a Leonard Cohen CD and an IOU for swimming trunks from mum, some figs from Alf, a hamper from neighbours, some money from nan and a fishing gadget thing from himself!
Fri was a busy day. In the morning I took some blood at home with a fingerprick to test the level of Tacolimus (my immunosupressant) in my blood and then posted that off to Hosp B for them to process. While I was at the post office, mum went to the surgery to sort out some of my prescriptions. Then we went to Hosp H for my regular bloods, so Hosp B can have the results before I go in. There was quite a long wait, but I saw a nice phlebotomist who got the blood easily. And she remembered me from a while ago, but I didn't remember her!
Next we headed to Tesco and ate our sandwiches in the car in the car park. And then I helped mum with a huge (2 hour) Tesco shop! I bought a nice purple fleece and a Dr Who DVD boxset. Before heading home we had drinks in the cafe :)
On Sat I finished writing all my Christmas cards (63 in total I think) and also wrapped and parcelled up 6 gifts to post (including 2 Secret Santas for the online AYME forums I use).
I also had a look at some reviews for my new laptop on the Internet. I probably ought to have done that before I bought it! :P The reviews were mostly positive apart from the laptop having poor battery life (just over 2 hours), although it will still be better than current battery life (under 2 hours). Apparently it has good speakers, doesn't overheat (so wont burn me when sitting with it on my knee), a good keyboard, a good monitor, is fast... Sounds good :)
Yesterday Claire came round in the afternoon/evening. We had a nice time despite me not feeling too well and Claire having a bad hangover, lol! :P Alf had some homework from college that involved drawing a diagram of a fish and its insides and labelling it, so Claire (who is artistic) drew a very nice fish called Freda for him :)
Today I discovered that my new laptop will be delivered tomorrow morning! I'm so excited :D I think the most exciting thing might be being able to turn my new laptop on with an 'on' button as the 'on' button snapped and fell out of my old laptop a couple of years ago! Today I've backed up all my files onto my external hard drive ready to transfer to my new laptop tomorrow. I'm going to give my old laptop to Alf and he's looking forward to taking it apart to see if there is anything good inside it that he can add to his computer! My new laptop will be delivered between 8am and 1pm tomorrow :D Because mum is going out to work at 9.30am I'll have to get up by then, which might be a challenge! :P But it'll be worth it as I'm sure I'll enjoy playing with my new laptop tomorrow :D
At the end of last week I received a letter through the post with a new date for my ESA medical assessment - Dec 23rd!!! That's too close to Christmas for my liking, I don't want to be worrying about how it went over Christmas. I tried to phone up to reschedule it today but every time I tried I got an engaged tone, grrrr. So I'll try again tomorrow. I also received a new physio appt through the post (as I didn't manage to make my previous one) for Dec 18th.
This afternoon I went to the post office to post most of my Christmas cards (just over 40 I think) and the 6 parcels I'd prepared. Sending them all second class cost me over £21!! I also put some Christmas cards in the box for the scouts to deliver around the village, topped up my phone and bought the Christmas Radio Times :)
This afternoon me and mum also visited my nan in hospital. Since she had the fall where she broke her wrist and bumped her head a few weeks ago she's been having funny spells where she feels nauseus and dizzy and gets a pain in her head. She didn't mention them to her doctor. But she had a bad one yesterday morning, so dad took her to Hospital H to get checked out. She spent most of yesterday in the assessment unit having various tests and dad stayed with her for most of the day. Then last night she was given a bed on a different ward and told she'd need to be admitted for a few days for some scans. So me and mum visited her this afternoon. She was ok in herself, just a bit fed up with being in hospital. Me and mum cheered her up though. And then as she left she was going for a CT scan of her brain. Dad then visited her this evening when she was more cheerful :) She'll hopefully be having a heart scan at some point tomorrow, so hopefully we'll know a bit more soon. Dad's brother will visit her tomorrow afternoon and his sister will visit her tomorrow evening. There was a very funny conversation between mum and dad and dad's brother on the phone this evening when dad phoned to tell his brother about nan. Dad's brother works with wood so is going to make mum some giant knitting needles! My family are mad! :P
This evening I had my second swine flu jab. Apparently it shouldn't be as sore this time because it's my second one, fingers crossed. I'm going to take some Paracetamol before bed though just in case.
My village's Christmas lights were turned on last week. There was no occassion made of the switching on this year (we usually have a funfair in the high street before the switch on) and I just noticed that they'd been turned on when I walked to the post box one evening last week. They look nice though and definitely make me feel more Christmassy :) Some people in our street have horrible lights and flashing things up though! We will be putting our tree and decorations up when I get back from my annual tests at Hosp B (13th to 15th) :)
I got my first Christmas card at the end of last week (and still my only one so far) and surprisingly it was from my AYME buddy. She also included a letter which was lovely as I'd not expected her to respond to my letters :) And a bit embarrassingly her name is actually Kate, not Katie as I'd been told :P
I'm hoping to attend an AYME Christmas meet-up on the afternoon of Dec 20th. I thought I'd have to get the train into London and then the train out again, but dad has volunteered to drive me to a train station a little bit further away from us and then I can get a direct train to the meet-up. I've been chatting to the girl who is organising it and the rest of the people attending don't use the AYME forums, so I'm not going to know them. I think most of them will be a bit older than me too. But if I feel well enough I think I'm going to be brave and go along to meet some new people :)
I've been thinking recently that I'd like to have a tattoo. I've been looking at designs on the Internet and quite like the idea of a butterfly or a Japanese character. I'm not sure though and have been having second thoughts because Claire has had one and regrets it. I'm also not sure what Dr G (my Hosp B) consultant would say. I suspect he'd say no because it's a risk and he doesn't like his patients taking risks - for example, I'm not allowed a pet. A friend of mine who has also had a transplant and is under the same consultant has a tattoo though, but I'm not sure if she asked permission or not. Hmmmm. It's something I'll have a think about and I might ask my consultant's opinion on it when I see him next week.
I've watched quite a lot of TV again :P I watched:
I've listened to an assortment on Spotify - The Noisettes, Michael Buble, Alicia Keys... And after listening to Pixie Lott more I've bought her album at last so I can have it on my iPod when I go into hospital :D
On Thur we had a new tumble dryer delivered. Mum is very happy that she can now dry clothes in the winter as our old tumble dryer broke ages ago! And Thur was also dad's 60th birthday! We had a nice evening when he got back in from work and mum cooked him fish soup for a birthday tea. Me and Alf had pasta though as we didn't fancy the fish soup :P Dad liked his presents - a Neil Young DVD from me, a Leonard Cohen CD and an IOU for swimming trunks from mum, some figs from Alf, a hamper from neighbours, some money from nan and a fishing gadget thing from himself!
Fri was a busy day. In the morning I took some blood at home with a fingerprick to test the level of Tacolimus (my immunosupressant) in my blood and then posted that off to Hosp B for them to process. While I was at the post office, mum went to the surgery to sort out some of my prescriptions. Then we went to Hosp H for my regular bloods, so Hosp B can have the results before I go in. There was quite a long wait, but I saw a nice phlebotomist who got the blood easily. And she remembered me from a while ago, but I didn't remember her!
Next we headed to Tesco and ate our sandwiches in the car in the car park. And then I helped mum with a huge (2 hour) Tesco shop! I bought a nice purple fleece and a Dr Who DVD boxset. Before heading home we had drinks in the cafe :)
On Sat I finished writing all my Christmas cards (63 in total I think) and also wrapped and parcelled up 6 gifts to post (including 2 Secret Santas for the online AYME forums I use).
I also had a look at some reviews for my new laptop on the Internet. I probably ought to have done that before I bought it! :P The reviews were mostly positive apart from the laptop having poor battery life (just over 2 hours), although it will still be better than current battery life (under 2 hours). Apparently it has good speakers, doesn't overheat (so wont burn me when sitting with it on my knee), a good keyboard, a good monitor, is fast... Sounds good :)
Yesterday Claire came round in the afternoon/evening. We had a nice time despite me not feeling too well and Claire having a bad hangover, lol! :P Alf had some homework from college that involved drawing a diagram of a fish and its insides and labelling it, so Claire (who is artistic) drew a very nice fish called Freda for him :)
Today I discovered that my new laptop will be delivered tomorrow morning! I'm so excited :D I think the most exciting thing might be being able to turn my new laptop on with an 'on' button as the 'on' button snapped and fell out of my old laptop a couple of years ago! Today I've backed up all my files onto my external hard drive ready to transfer to my new laptop tomorrow. I'm going to give my old laptop to Alf and he's looking forward to taking it apart to see if there is anything good inside it that he can add to his computer! My new laptop will be delivered between 8am and 1pm tomorrow :D Because mum is going out to work at 9.30am I'll have to get up by then, which might be a challenge! :P But it'll be worth it as I'm sure I'll enjoy playing with my new laptop tomorrow :D
At the end of last week I received a letter through the post with a new date for my ESA medical assessment - Dec 23rd!!! That's too close to Christmas for my liking, I don't want to be worrying about how it went over Christmas. I tried to phone up to reschedule it today but every time I tried I got an engaged tone, grrrr. So I'll try again tomorrow. I also received a new physio appt through the post (as I didn't manage to make my previous one) for Dec 18th.
This afternoon I went to the post office to post most of my Christmas cards (just over 40 I think) and the 6 parcels I'd prepared. Sending them all second class cost me over £21!! I also put some Christmas cards in the box for the scouts to deliver around the village, topped up my phone and bought the Christmas Radio Times :)
This afternoon me and mum also visited my nan in hospital. Since she had the fall where she broke her wrist and bumped her head a few weeks ago she's been having funny spells where she feels nauseus and dizzy and gets a pain in her head. She didn't mention them to her doctor. But she had a bad one yesterday morning, so dad took her to Hospital H to get checked out. She spent most of yesterday in the assessment unit having various tests and dad stayed with her for most of the day. Then last night she was given a bed on a different ward and told she'd need to be admitted for a few days for some scans. So me and mum visited her this afternoon. She was ok in herself, just a bit fed up with being in hospital. Me and mum cheered her up though. And then as she left she was going for a CT scan of her brain. Dad then visited her this evening when she was more cheerful :) She'll hopefully be having a heart scan at some point tomorrow, so hopefully we'll know a bit more soon. Dad's brother will visit her tomorrow afternoon and his sister will visit her tomorrow evening. There was a very funny conversation between mum and dad and dad's brother on the phone this evening when dad phoned to tell his brother about nan. Dad's brother works with wood so is going to make mum some giant knitting needles! My family are mad! :P
This evening I had my second swine flu jab. Apparently it shouldn't be as sore this time because it's my second one, fingers crossed. I'm going to take some Paracetamol before bed though just in case.
My village's Christmas lights were turned on last week. There was no occassion made of the switching on this year (we usually have a funfair in the high street before the switch on) and I just noticed that they'd been turned on when I walked to the post box one evening last week. They look nice though and definitely make me feel more Christmassy :) Some people in our street have horrible lights and flashing things up though! We will be putting our tree and decorations up when I get back from my annual tests at Hosp B (13th to 15th) :)
I got my first Christmas card at the end of last week (and still my only one so far) and surprisingly it was from my AYME buddy. She also included a letter which was lovely as I'd not expected her to respond to my letters :) And a bit embarrassingly her name is actually Kate, not Katie as I'd been told :P
I'm hoping to attend an AYME Christmas meet-up on the afternoon of Dec 20th. I thought I'd have to get the train into London and then the train out again, but dad has volunteered to drive me to a train station a little bit further away from us and then I can get a direct train to the meet-up. I've been chatting to the girl who is organising it and the rest of the people attending don't use the AYME forums, so I'm not going to know them. I think most of them will be a bit older than me too. But if I feel well enough I think I'm going to be brave and go along to meet some new people :)
I've been thinking recently that I'd like to have a tattoo. I've been looking at designs on the Internet and quite like the idea of a butterfly or a Japanese character. I'm not sure though and have been having second thoughts because Claire has had one and regrets it. I'm also not sure what Dr G (my Hosp B) consultant would say. I suspect he'd say no because it's a risk and he doesn't like his patients taking risks - for example, I'm not allowed a pet. A friend of mine who has also had a transplant and is under the same consultant has a tattoo though, but I'm not sure if she asked permission or not. Hmmmm. It's something I'll have a think about and I might ask my consultant's opinion on it when I see him next week.
I've watched quite a lot of TV again :P I watched:
- The Restaurant - I was surprised no-one was eliminated, seems like a bit of a cop out to me! I was flicking through next week's Radio Times and it says who makes the final of The Restaurant! I don't think that's fair to publish that when the semi-final still hasn't been shown on TV. So now I know who'll go out this week! :(
- Never Mind the Buzzcocks - I enjoyed this because it was X Factor themed - Dermot was the host and Aston (from JLS) was one of the guests :D I wasn't so happy with one of the teams saying Pink was rubbish though :(
- Have I Got News For You - I don't usually understand this programme, but tried to watch this episode because Jo Brand was on it. I didn't understand it though and so didn't watch it all.
- X Factor and X Factor Results - Yay at the results! Just what I wanted :D Glad Danyl has gone, as he annoyed me and I didn't like his performance of my favourite Michael Jackson song (Man In The Mirror) on Sat. I thought Stacey and Joe were the best on Sat. I hope Joe wins, Stacey comes second and Olly comes third :) If anyone reading this is a fan of Joe, like me, you can download the audio files of his X Factor performances here - I've put them on my iPod :) I thought Lady Gaga's performance was definitely a talking point of Sun's programme. She is very weird! And Janet Jackson's performance was poor - her miming was awful and it was just dull!
- Xtra Factor - I started watching this on Sat and Sun, but my concentration didn't last.
- Something for the Weekend - It had Pixie Lott on it and I like her :)
- Alan Titchmarch - The Radio Times said it would have Pixie Lott on but it didn't :( I did enjoy watching Ed Byrne (who I saw live at Save Jess-tival) and June Whitfield (who I've seen in Absolutely Fabulous) being interviewed on it though :)
- Gadget Show - I'm still trying to watch this each week, but it just doesn't keep my concentration any more.
- QI - Tonight's episode about animals beginning with the letter 'G' was very funny :)
I've listened to an assortment on Spotify - The Noisettes, Michael Buble, Alicia Keys... And after listening to Pixie Lott more I've bought her album at last so I can have it on my iPod when I go into hospital :D
Sunday, 22 November 2009
Short (hopefully) update
Last night I went to bed at 1.15am because I felt a bit nocturnal and so wrote my previous blog update. I woke up earlier than my alarm this morning, so got up at 9am. I've been very tired today though, more tired than yesterday. I was planning to browse round the local carboot sale this morning, but decided against it because I didn't have the energy. So my parents went and I just stayed home and had a shower and stuff instead. I'm glad I didn't go to the carboot sale though because my parents got caught in a downpour while they were out and had to get changed when they got back because they were so wet! Mum hadn't taken a coat with her :P They managed a quick look round the carboot sale in the rain though and because of the downpour, stall owners were almost giving things away, so they picked up a couple of great bargains including a kitchen knife for just 10p and a DVD for me for just 50p :D
I've watched lots of TV today because I've been so tired. I watched a programme about Pink on C4 this morning (but the presenter really annoyed me), an interview with Taylor Swift on Something for the Weekend, The Restaurant which I recorded from last Thur and I attempted to watch a Horizon programme all about talking and language on iPlayer, but just couldn't concentrate on it so had to give up. And I also used iPlayer to listen to Pixie Lott on the Radio 1's Live Lounge from Thur :) I also watched the X Factor and most of the Xtra Factor tonight - I'm so glad that the twins are out at last! I wasn't very impressed with the performances tonight though - I'm not keen on Susan Boyle and I can't stand Mariah Carey!
I've wanted to use Spotify for a while, but was really disappointed that I'd missed the free sign up period and that now you need an invite from someone who pays for it to get a free account. But tonight on one of the ME forums I use, someone told me how to get around that and get Spotify without an invite. If anyone is interested, just click here. So I signed up and downloaded Spotify and I love it :D Now I just need some decent speakers for my laptop and then I'm sorted! Because you can only access music from Spotify on your computer, I'll still buy CDs so I can put them on my iPod, but I'm hoping now I'll be able to wait til they drop in price as I'll be able to listen to them on Spotify in the meantime. The first thing I used Spotify for was to listen to Pixie Lott's album and it's brilliant :D But I'm not in such a rush to buy it now I can listen to it on my laptop :)
My dad looked at my bedside lamp today and he managed to mend the broken fuse which had stopped it working, but somehow in the process he made it so that the lamp works, but wont turn on or off, lol :P So I'll have to have a look for a new one.
As I've mentioned before I've just started writing to my new AYME buddy who is called Katie. Last week I wrote to her mum asking for advice on what to buy Katie for Christmas as I want to get her a little something, but as I've never been severely affected by ME myself I didn't want to buy her something that she couldn't use. Today I received a lovely email in response from her younger sister and now I've got some good ideas about what to get her for Christmas :)
Today I heard from K's mum. I've not mentioned K for a while, but she's a little girl I met in hospital who had a transplant like mine. K is 5 and has been having lots of health problems this last year which mean she'll probably need a second transplant. And she had very severe swine flu a few months ago. I'd not heard from K's mum for a month or two, but contacted her today. K is still in hospital and not doing very well. And K's mum and dad have just split up :(
Today me and mum have been planning tomorrow. I've been quite worried that I might not be well enough to go, but I'm going to make every effort to get to the concert tomorrow as I really don't want to miss it. Hopefully I'll feel a bit better tomorrow morning than I have done today, fingers crossed. If I'm feeling well then we're probably going to go to Harrods first then go on to the concert. If I'm not feeling so well then we'll just go to the concert. I've not really allowed myself to get excited today, but if I wake up tomorrow morning feeling ok, then I'll get excited. I'll try to update tomorrow to let you know whether I've made it out or not.
I've watched lots of TV today because I've been so tired. I watched a programme about Pink on C4 this morning (but the presenter really annoyed me), an interview with Taylor Swift on Something for the Weekend, The Restaurant which I recorded from last Thur and I attempted to watch a Horizon programme all about talking and language on iPlayer, but just couldn't concentrate on it so had to give up. And I also used iPlayer to listen to Pixie Lott on the Radio 1's Live Lounge from Thur :) I also watched the X Factor and most of the Xtra Factor tonight - I'm so glad that the twins are out at last! I wasn't very impressed with the performances tonight though - I'm not keen on Susan Boyle and I can't stand Mariah Carey!
I've wanted to use Spotify for a while, but was really disappointed that I'd missed the free sign up period and that now you need an invite from someone who pays for it to get a free account. But tonight on one of the ME forums I use, someone told me how to get around that and get Spotify without an invite. If anyone is interested, just click here. So I signed up and downloaded Spotify and I love it :D Now I just need some decent speakers for my laptop and then I'm sorted! Because you can only access music from Spotify on your computer, I'll still buy CDs so I can put them on my iPod, but I'm hoping now I'll be able to wait til they drop in price as I'll be able to listen to them on Spotify in the meantime. The first thing I used Spotify for was to listen to Pixie Lott's album and it's brilliant :D But I'm not in such a rush to buy it now I can listen to it on my laptop :)
My dad looked at my bedside lamp today and he managed to mend the broken fuse which had stopped it working, but somehow in the process he made it so that the lamp works, but wont turn on or off, lol :P So I'll have to have a look for a new one.
As I've mentioned before I've just started writing to my new AYME buddy who is called Katie. Last week I wrote to her mum asking for advice on what to buy Katie for Christmas as I want to get her a little something, but as I've never been severely affected by ME myself I didn't want to buy her something that she couldn't use. Today I received a lovely email in response from her younger sister and now I've got some good ideas about what to get her for Christmas :)
Today I heard from K's mum. I've not mentioned K for a while, but she's a little girl I met in hospital who had a transplant like mine. K is 5 and has been having lots of health problems this last year which mean she'll probably need a second transplant. And she had very severe swine flu a few months ago. I'd not heard from K's mum for a month or two, but contacted her today. K is still in hospital and not doing very well. And K's mum and dad have just split up :(
Today me and mum have been planning tomorrow. I've been quite worried that I might not be well enough to go, but I'm going to make every effort to get to the concert tomorrow as I really don't want to miss it. Hopefully I'll feel a bit better tomorrow morning than I have done today, fingers crossed. If I'm feeling well then we're probably going to go to Harrods first then go on to the concert. If I'm not feeling so well then we'll just go to the concert. I've not really allowed myself to get excited today, but if I wake up tomorrow morning feeling ok, then I'll get excited. I'll try to update tomorrow to let you know whether I've made it out or not.
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