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.
Showing posts with label snow. Show all posts
Showing posts with label snow. Show all posts
Wednesday, 13 January 2010
Sunday, 10 January 2010
A busy week
On Tuesday afternoon me and mum went out to visit my nan. She wasn't in as good spirits as she usually is because she'd not been sleeping well. But when we saw her she'd just got a supply of her usual painkillers and we provided her with earplugs and an eyemask so thought they'd help her sleep better. Dad visited her on Wed and said she was much more like her usual self after a better night's sleep. My nan's wrist is a lot better (she broke it in a fall in November) and she's able to have her wrist splint off for periods now. And she's generally feeling a lot better than when she was admitted 5 weeks ago, which I think is due to the rest she's been getting. The doctors are still trying to get her to put on weight though, so she's allowed to order snacks and high calorie foods with her usual meals. But she's quite a picky eater, so hasn't gained any weight yet. She's 5ft 6" and weighs just 46kg. I ate her slice of cake for her while we were there because she didn't want it. I'm not sure if the scans and tests haven't shown anything or whether they have but my nan just hasn't been told. She's not seen her consultant for about 3 weeks, she keeps seeing junior doctors instead and they don't have a clue! We've all suggested that she asks to see her consultant, but my nan wont because she doesn't want to cause any bother. However she is going to be discharged tomorrow or Tue :D The only thing stopping her getting home was the fact that her bed was too high for her now that her mobility has decreased, but Dad bought and set up a new one for her yesterday.
And on the way home from visiting nan I called in at the village surgery to pick up some tablets for dad and to give mine and mum's prescriptions in. I'll return tomorrow to pick up the tablets and tape for my NG tube that I ordered.
On Tue night I got to sleep at about midnight again :) That was good though as I needed to be at the stupidly early time of 7.30am on Wed morning! However I've been very nocturnal again since then :P Need to try to get to bed at a sensible time tonight though because I need to get up earlier than usual for a physio appt tomorrow.
On Wed morning at 9am I had my first Pathways to Work interview. Most people who receive the ESA benefit have to attend at least 5 of these interviews and the aim of them is to help you get back into work after being ill. I was quite nervous about it as I didn't know what to expect and was worried that I'd be pressured into going back to work before I was well enough. However, it went very well. I saw a lovely advisor and together we filled in lots of forms and I was asked lots of questions about my health, how it would affect me working, what sort of work I'd like to do etc. The advisor I saw agreed that I'm not well enough to work at the moment. However I've got an appt with someone else for 3 weeks time to help me put together a CV and I'll be seeing the same lady again in about a month when we're going to have a think about whether I could try some volunteering. So I'm glad I'm not going to be pressured into anything. And after my appt I had a wander round town and then we went to Starbucks. They charged us £2.20 for a glass of milk for me, what a rip-off!
And it started snowing while I was out on Wed - at last! It snowed solidly from about 9am til about 1pm. And the snow settled too. We've not had any more since then though and I don't think we're forecast any more. The snow doesn't seem to have hit us nearly as badly as it has the rest of the UK. The snow froze, but our roads seemed ok. And the snow is melting now.
On Wed late morning/early afternoon mum had to brave the blizzards to go and rescue Alf from college before he got stranded there. She managed to get him ok, but somehow skidded off the road on the way home and destroyed a fence! Luckily they weren't hurt and the car only has a tiny little scratch on the paintwork! Haha :P
When I got back home on Wed I collected some high calorie drinks from our next door neighbour because they'd been delivered while we were out. The parcel contained some Fortisip drinks - which I already know upset my tummy, some yoghurt style Fortisip drinks - which I still need to try but suspect may also upset my tummy, some Fortijuice drinks - I tried the apple flavoured one yesterday and it made me feel nauseus all day and some strawberry flavoured Fortisip puddings - I've tried 2 of them and they're not pleasant but I can manage them. I'm going to try the Fortisip yoghurt flavours and then get back to my dietician with my thoughts on them all.
I was exhausted after my busy morning on Wed, but still managed to have a quite a productive afternoon and evening. That afternoon I was phoned by a liver nurse from Hosp B. He said he couldn't answer all my questions because my consultant, Dr G, was out of the country. Dr G was supposed to be back, but couldn't get a flight due to the snow. Another consultant I know, Dr B, had been involved in the Wed meeting instead, but she'd been phoned at home because she was snowed in! But some of my questions could be answered. My Tac level was 8.2, so they want to keep my Tac level the same for now. It'll be reviewed after my next blood test at the end of the month. I've still not heard back from the company that deliver my Tac but will have to chase them up tomorrow because I really am running short of Tac (I think I've got 6 days worth left). My next clinic will probably be in March. That's got me wondering what has happened to my clincs with Dr W at Hosp A because when I saw him in July he said he wanted to see me again in 3 months. It's now been 6 months and I've not heard anything, I wonder if they've forgotten me?!
Apparently I will receive the results from my Dec tests in a letter, but I don't know when I'll actually get that. So for now I don't know what my kidney results were. Apparently my scopes and biopsies showed no rejection, which is great :D However they did show some inflammation. The nurse I spoke to didn't have all my notes with him, but thought that that might be an indication of a low level infection that could be causing my tummy cramps. Then I pointed out to him that I'd been getting the pains for 18 months, so he wasn't sure. Hopefully my consultant will soon shed some more light on that though. I'm so glad they've found something that could explain my tummy pains at last. Hopefully now they'll take me more seriously.
The nurse I spoke to had no idea at all about the heart ECG and echo and he looked back at my last admission letter and my last 2 clinic letters but couldn't see any indication of why Dr G had booked them for me. He was very surprised that they'd just been booked without me knowing anything about it. So the nurse emailed Dr G who quickly replied to me. He thought that there had been a mix up. Apparently all post transplant patients have regular echoes, but I'm 3 years post transplant now and hadn't heard about that before! And that can wait til my next clinic, so the separate appt has been cancelled.
On Wed evening I attemped some knitting! Mum taught me with some huge needles and some chunky wool and I knitted a few rows. Me and mum were both surprised at how quickly I got the hang of it despite feeling exhausted. I didn't do much though because I wanted to leave it at a good point. And I've not picked it up again yet.
During my nocturnalism that night I sorted through all the Christmas cards from this year and picked out a few to keep which had notes written inside or were hand made cards. And then I looked through a big carrier bag of my old artwork from when I was about 3 til 12. Some of it was very cute :) And I used to write backwards before I started school, hehe :P
On Thur morning one of the DVDs I'd ordered for my mum for her birthday arrived in the post. And the other DVD has been dispatched. We also received a very sweet thank you note from Sophie's little sister E thanking us for her Christmas presents. That morning I also tidied my bedroom (decluttered, dusted, hoovered...) in preparation for Catherine coming that afternoon. That wasn't a clever idea, I was then shattered before she'd even arrived!
Catherine and her mum came round for a couple of hours on Thur afternoon. It was great to see Catherine because she's been away at uni. We exchanged Christmas presents (Catherine gave me some Pocky and some fluffy bedsocks), chatted, played on our DSes and also played on my Wii which was good fun :D And that evening I prepared for my ESA medical assessment by getting recent medical letters together, reading through the advice I'd received on AYME and some info I found on the Internet...
On Fri morning we headed into the city. As we were in the car we passed by a gritter and so got grit thrown over the windscreen. Of course the water squirters were frozen and using the windscreen wipers just smeared the windscreen even more. So that made mum's driving more difficult. We parked at the Park and Ride carpark and got a bus into the city centre. We were a bit early so wandered around the shops and I picked up a bargain - Coraline on DVD for just £8 (the cheapest current price on the Internet is £13!).
Then we walked to the venue for my ESA medical assessment. The doctor I saw really seemed to know his stuff - he had a good understanding of ME and even understood when I told him I'd had an interssucception of my small intestine! I had to ask him to repeat some things because he had a strong foreign accent, but he understood me, listened well and made lots of notes. I had been told that it could take up to 2 hours, but it only took 30mins. He didn't ask too many questions, but because I answered them in lots of detail we managed to cover a lot. He also asked a lot about my transplant as well as my ME. And he noticed things like that I need to be reminded to eat and drink because I don't feel hunger or thirst. He didn't ask me to do any tasks, it was just talking and answering questions.
The doctor I saw will send his notes to the people who make the decision and then they'll write to me. So I wont know the outcome for some time, anywhere between 2 and 6 weeks I think. The possible outcomes are to be turned down for ESA or to be put into one of 2 groups to receive ESA - the support group which gets a little bit more money and doesn't have to do anything else or the employment group who get slightly less money and have to attend 5 Pathways to Work interviews. So basically most people who receive ESA get put into the employment group with those who are more ill/disabled being put into the support group. The doctor I saw said he shouldn't really be telling me this, but he's going to recommend that I'm put into the support group. The final decision isn't down to him though and I'm not really bothered which group I'm put into, I just want to be granted ESA. So fingers crossed. I'm trying to put it out of my mind for now though.
After my ESA medical assessment me and mum went to a cafe where I had a glass of milk, a croissant and a bit of mum's piece of flapjack. I always wear an organ donation wristband. I was given lots post transplant by someone I saw at the time, but haven't been able to get hold of any more, they were just manufactured as a one off. I gave lots to friends to wear to raise awareness and me and dad have got through a few each because they wear out after a while or get lost. I lost one when I was in Japan, I think it must have flown off one time when I took my gloves off. And somehow I managed to lose my final wristband that way was while we were out on Fri :( Luckily Claire had one that she didn't wear much, so she's given me that back. I felt lost without it.
On Fri evening I was surfing the Internet and discovered that Ellie Goulding (a great singer/songwriter who I saw supporting Little Boots on tour) had been named as BBC's Sound of 2010 :D You can read more about her and the award here and here. And she was on Radio 2 here if you'd like to hear some of her music. And while I was on the Internet I also cancelled my subscription to Focus magazine. It's a great magazine, but I'm really struggling to read it at the moment. And mum's friend Mary (who lives just across the road) popped in to tell us about how her trip to New York had been. It sounded amazing, I'd love to go to New York!
On Saturday and today I've been exhausted after such a busy week and a stressful day on Fri. So I've not managed to do much. On Sat I briefly played on my Wii and chatted to Chris when he popped round. And I also remembered that I'd got 60 free Napster music downloads when I bought my new laptop, so used some of them to download Alexandra Burke's Overcome album (which I've listened to lots on Spotify and really like) and a song called Under The Sheets by Ellie Goulding which I really like and heard her perform live when we saw her :)
This morning I felt shattered so tried to go back to bed for a couple of hours. I'd just nodded off though when I was woken by the sound of the downstairs TV coming up through the floor so I decided to give up on that plan. Claire came round this afternoon which was nice, but we only chatted because I didn't have the energy to play on the Wii or anything like that.
There was outrage in the ME community earlier this week when the Daily Mail posted a poll on its website asking whether people thought ME was a genuine illness or not. You can view it here. It's annoyed me a bit because they wouldn't dare run a poll like that for any other illnesses, but somehow it's ok to do that for ME. Grrr. Some people I know have really been upset by it though :(
I posted an update today about the latest news on Jess. If you haven't already done so, please read it here.
M spent 6 hours in theatre on Thur. She remained stable throughout the operation and afterwards. The surgeons discovered that all of her transplanted bowel is very damaged. They couldn't remove it all because of the blood vessel connections to her transplanted liver (which is completely fine), so just removed the worst bits in the hope that that will reduce the bleeding. If not she'll have to return to theatre this week to have some more removed. The hope now is that she'll stabilise enough to be listed for a second transplant. Fingers crossed.
I've been in contact with C, who is mine and Imogen's mutual friend. Her mum had been receiving text updates from Imy's mum, so she let me know as much as she knew. And C gave me Imy's mum's mobile number so I've been in contact with her myself today. Imy received her trasplant on Dec 31st, so that's 11 days ago. She's back on a ward and has been eating a little. She could eat a bit pre-transplant, but it was very restricted. Imy is still very uncomfortable which is completely understandable and is having a bit of difficulty learning to take her tablets orally because she's always had them down a tube before. But her hospital seem to have a very different approach to Hosp B. After my transplant my TPN (intravenous feeding) was gradually reduced and replaced by NG (enteral) feeding. And then as I've gradually learnt to eat and have built my eating up, my NG feeds have been reduced. However Imy is allowed to eat pretty much whatever she wants and is currently still on TPN. But next week they're planning to stop her TPN completely and see how she goes with just eating. She wont have any enteral feeds. That sounds very daunting to me, but hopefully Imy will manage ok. Her mum thinks that she might be in touch with me herself soon and then hopefully I'll be able to visit her in hospital when she's feeling a bit better :)
This week I've listened to quite a bit of music. When mum played with Spotify we listened to Michael Buble (who mum likes more than me) and Pixie Lott (who we both love). I've also listened to Mika on my iPod on the buses on Fri. And I've listened to The Saturday's new album Wordshaker (which I received for Christmas from one of my Secret Santas) - I currently really like Ego which is going to be their next single. I've just discovered that Spotify have now made Cheryl Cole's album 3 Words and Rihanna's latest album Rated R available to the people who use Spotify for free, whereas it was originally just available to paying members. I've been waiting for both of those albums so have listened to a bit of Cheryl Cole's album but am looking forward to listening to more of it and I'm also looking forward to seeing what I think of Rihannna's album.
This week with my parents I've watched the final 2 episodes plus the outtakes of the first series of Gavin and Stacey and the first 2 episodes of the second series (which we've borrowed from the library). We're still all really enjoying watching it together :) And on my own I've watched 2 episodes of The Vicar of Dibley from my boxset and 3 episodes of the first series of Dragons' Den which I rented from Tesco DVD rental.
And the only film I've watched this week is St Trinians (which I had rented), with my parents. I thought it was quite good. Me and mum are hoping to go to the cinema with Claire on Wed evening to see St Trinians 2 :)
And on TV I've watched the following:
~ Great British Railway Journeys - I started watching this series with mum because she loves trains and railways. I said in my last blog post that the first episode was disappointing because most of the content wasn't actually railway related. We watched Tue's episode and then gave up on it.
~ Hannah: The Girl Who Said No To A New Heart - this was on TV on Tue evening, but I watched it on Wed. It's definitely worth a watch, as it's very thought provoking.
~ Nurse Jackie - this is a black comedy series from the USA. It was on the BBC every night last week and the remaining episodes will be on weekly from tomorrow (Mon). I wasn't sure about it at first, but now me and mum really like it. I'd recommend it.
~ Wife Swap USA - rubbish TV I know, but it amused me ;)
~ 3 Men Go To Ireland - I watched the second episode of this off our HDR and it was very funny.
~ Tracy Beaker Returns - I loved watching the original series of Tracy Beaker when I was younger and a new series has just begun after many years. So I'm watching it :D
~ QI - very funny as always.
~ Sugababes new music video for Wear My Kiss - I used to like the Sugababes, but have gone off them recently. I had to watch the first TV showing of their new video though. I wasn't impressed.
~ and I've also watched the music channels a bit this week too.
And on the way home from visiting nan I called in at the village surgery to pick up some tablets for dad and to give mine and mum's prescriptions in. I'll return tomorrow to pick up the tablets and tape for my NG tube that I ordered.
On Tue night I got to sleep at about midnight again :) That was good though as I needed to be at the stupidly early time of 7.30am on Wed morning! However I've been very nocturnal again since then :P Need to try to get to bed at a sensible time tonight though because I need to get up earlier than usual for a physio appt tomorrow.
On Wed morning at 9am I had my first Pathways to Work interview. Most people who receive the ESA benefit have to attend at least 5 of these interviews and the aim of them is to help you get back into work after being ill. I was quite nervous about it as I didn't know what to expect and was worried that I'd be pressured into going back to work before I was well enough. However, it went very well. I saw a lovely advisor and together we filled in lots of forms and I was asked lots of questions about my health, how it would affect me working, what sort of work I'd like to do etc. The advisor I saw agreed that I'm not well enough to work at the moment. However I've got an appt with someone else for 3 weeks time to help me put together a CV and I'll be seeing the same lady again in about a month when we're going to have a think about whether I could try some volunteering. So I'm glad I'm not going to be pressured into anything. And after my appt I had a wander round town and then we went to Starbucks. They charged us £2.20 for a glass of milk for me, what a rip-off!
And it started snowing while I was out on Wed - at last! It snowed solidly from about 9am til about 1pm. And the snow settled too. We've not had any more since then though and I don't think we're forecast any more. The snow doesn't seem to have hit us nearly as badly as it has the rest of the UK. The snow froze, but our roads seemed ok. And the snow is melting now.
On Wed late morning/early afternoon mum had to brave the blizzards to go and rescue Alf from college before he got stranded there. She managed to get him ok, but somehow skidded off the road on the way home and destroyed a fence! Luckily they weren't hurt and the car only has a tiny little scratch on the paintwork! Haha :P
When I got back home on Wed I collected some high calorie drinks from our next door neighbour because they'd been delivered while we were out. The parcel contained some Fortisip drinks - which I already know upset my tummy, some yoghurt style Fortisip drinks - which I still need to try but suspect may also upset my tummy, some Fortijuice drinks - I tried the apple flavoured one yesterday and it made me feel nauseus all day and some strawberry flavoured Fortisip puddings - I've tried 2 of them and they're not pleasant but I can manage them. I'm going to try the Fortisip yoghurt flavours and then get back to my dietician with my thoughts on them all.
I was exhausted after my busy morning on Wed, but still managed to have a quite a productive afternoon and evening. That afternoon I was phoned by a liver nurse from Hosp B. He said he couldn't answer all my questions because my consultant, Dr G, was out of the country. Dr G was supposed to be back, but couldn't get a flight due to the snow. Another consultant I know, Dr B, had been involved in the Wed meeting instead, but she'd been phoned at home because she was snowed in! But some of my questions could be answered. My Tac level was 8.2, so they want to keep my Tac level the same for now. It'll be reviewed after my next blood test at the end of the month. I've still not heard back from the company that deliver my Tac but will have to chase them up tomorrow because I really am running short of Tac (I think I've got 6 days worth left). My next clinic will probably be in March. That's got me wondering what has happened to my clincs with Dr W at Hosp A because when I saw him in July he said he wanted to see me again in 3 months. It's now been 6 months and I've not heard anything, I wonder if they've forgotten me?!
Apparently I will receive the results from my Dec tests in a letter, but I don't know when I'll actually get that. So for now I don't know what my kidney results were. Apparently my scopes and biopsies showed no rejection, which is great :D However they did show some inflammation. The nurse I spoke to didn't have all my notes with him, but thought that that might be an indication of a low level infection that could be causing my tummy cramps. Then I pointed out to him that I'd been getting the pains for 18 months, so he wasn't sure. Hopefully my consultant will soon shed some more light on that though. I'm so glad they've found something that could explain my tummy pains at last. Hopefully now they'll take me more seriously.
The nurse I spoke to had no idea at all about the heart ECG and echo and he looked back at my last admission letter and my last 2 clinic letters but couldn't see any indication of why Dr G had booked them for me. He was very surprised that they'd just been booked without me knowing anything about it. So the nurse emailed Dr G who quickly replied to me. He thought that there had been a mix up. Apparently all post transplant patients have regular echoes, but I'm 3 years post transplant now and hadn't heard about that before! And that can wait til my next clinic, so the separate appt has been cancelled.
On Wed evening I attemped some knitting! Mum taught me with some huge needles and some chunky wool and I knitted a few rows. Me and mum were both surprised at how quickly I got the hang of it despite feeling exhausted. I didn't do much though because I wanted to leave it at a good point. And I've not picked it up again yet.
During my nocturnalism that night I sorted through all the Christmas cards from this year and picked out a few to keep which had notes written inside or were hand made cards. And then I looked through a big carrier bag of my old artwork from when I was about 3 til 12. Some of it was very cute :) And I used to write backwards before I started school, hehe :P
On Thur morning one of the DVDs I'd ordered for my mum for her birthday arrived in the post. And the other DVD has been dispatched. We also received a very sweet thank you note from Sophie's little sister E thanking us for her Christmas presents. That morning I also tidied my bedroom (decluttered, dusted, hoovered...) in preparation for Catherine coming that afternoon. That wasn't a clever idea, I was then shattered before she'd even arrived!
Catherine and her mum came round for a couple of hours on Thur afternoon. It was great to see Catherine because she's been away at uni. We exchanged Christmas presents (Catherine gave me some Pocky and some fluffy bedsocks), chatted, played on our DSes and also played on my Wii which was good fun :D And that evening I prepared for my ESA medical assessment by getting recent medical letters together, reading through the advice I'd received on AYME and some info I found on the Internet...
On Fri morning we headed into the city. As we were in the car we passed by a gritter and so got grit thrown over the windscreen. Of course the water squirters were frozen and using the windscreen wipers just smeared the windscreen even more. So that made mum's driving more difficult. We parked at the Park and Ride carpark and got a bus into the city centre. We were a bit early so wandered around the shops and I picked up a bargain - Coraline on DVD for just £8 (the cheapest current price on the Internet is £13!).
Then we walked to the venue for my ESA medical assessment. The doctor I saw really seemed to know his stuff - he had a good understanding of ME and even understood when I told him I'd had an interssucception of my small intestine! I had to ask him to repeat some things because he had a strong foreign accent, but he understood me, listened well and made lots of notes. I had been told that it could take up to 2 hours, but it only took 30mins. He didn't ask too many questions, but because I answered them in lots of detail we managed to cover a lot. He also asked a lot about my transplant as well as my ME. And he noticed things like that I need to be reminded to eat and drink because I don't feel hunger or thirst. He didn't ask me to do any tasks, it was just talking and answering questions.
The doctor I saw will send his notes to the people who make the decision and then they'll write to me. So I wont know the outcome for some time, anywhere between 2 and 6 weeks I think. The possible outcomes are to be turned down for ESA or to be put into one of 2 groups to receive ESA - the support group which gets a little bit more money and doesn't have to do anything else or the employment group who get slightly less money and have to attend 5 Pathways to Work interviews. So basically most people who receive ESA get put into the employment group with those who are more ill/disabled being put into the support group. The doctor I saw said he shouldn't really be telling me this, but he's going to recommend that I'm put into the support group. The final decision isn't down to him though and I'm not really bothered which group I'm put into, I just want to be granted ESA. So fingers crossed. I'm trying to put it out of my mind for now though.
After my ESA medical assessment me and mum went to a cafe where I had a glass of milk, a croissant and a bit of mum's piece of flapjack. I always wear an organ donation wristband. I was given lots post transplant by someone I saw at the time, but haven't been able to get hold of any more, they were just manufactured as a one off. I gave lots to friends to wear to raise awareness and me and dad have got through a few each because they wear out after a while or get lost. I lost one when I was in Japan, I think it must have flown off one time when I took my gloves off. And somehow I managed to lose my final wristband that way was while we were out on Fri :( Luckily Claire had one that she didn't wear much, so she's given me that back. I felt lost without it.
On Fri evening I was surfing the Internet and discovered that Ellie Goulding (a great singer/songwriter who I saw supporting Little Boots on tour) had been named as BBC's Sound of 2010 :D You can read more about her and the award here and here. And she was on Radio 2 here if you'd like to hear some of her music. And while I was on the Internet I also cancelled my subscription to Focus magazine. It's a great magazine, but I'm really struggling to read it at the moment. And mum's friend Mary (who lives just across the road) popped in to tell us about how her trip to New York had been. It sounded amazing, I'd love to go to New York!
On Saturday and today I've been exhausted after such a busy week and a stressful day on Fri. So I've not managed to do much. On Sat I briefly played on my Wii and chatted to Chris when he popped round. And I also remembered that I'd got 60 free Napster music downloads when I bought my new laptop, so used some of them to download Alexandra Burke's Overcome album (which I've listened to lots on Spotify and really like) and a song called Under The Sheets by Ellie Goulding which I really like and heard her perform live when we saw her :)
This morning I felt shattered so tried to go back to bed for a couple of hours. I'd just nodded off though when I was woken by the sound of the downstairs TV coming up through the floor so I decided to give up on that plan. Claire came round this afternoon which was nice, but we only chatted because I didn't have the energy to play on the Wii or anything like that.
There was outrage in the ME community earlier this week when the Daily Mail posted a poll on its website asking whether people thought ME was a genuine illness or not. You can view it here. It's annoyed me a bit because they wouldn't dare run a poll like that for any other illnesses, but somehow it's ok to do that for ME. Grrr. Some people I know have really been upset by it though :(
I posted an update today about the latest news on Jess. If you haven't already done so, please read it here.
M spent 6 hours in theatre on Thur. She remained stable throughout the operation and afterwards. The surgeons discovered that all of her transplanted bowel is very damaged. They couldn't remove it all because of the blood vessel connections to her transplanted liver (which is completely fine), so just removed the worst bits in the hope that that will reduce the bleeding. If not she'll have to return to theatre this week to have some more removed. The hope now is that she'll stabilise enough to be listed for a second transplant. Fingers crossed.
I've been in contact with C, who is mine and Imogen's mutual friend. Her mum had been receiving text updates from Imy's mum, so she let me know as much as she knew. And C gave me Imy's mum's mobile number so I've been in contact with her myself today. Imy received her trasplant on Dec 31st, so that's 11 days ago. She's back on a ward and has been eating a little. She could eat a bit pre-transplant, but it was very restricted. Imy is still very uncomfortable which is completely understandable and is having a bit of difficulty learning to take her tablets orally because she's always had them down a tube before. But her hospital seem to have a very different approach to Hosp B. After my transplant my TPN (intravenous feeding) was gradually reduced and replaced by NG (enteral) feeding. And then as I've gradually learnt to eat and have built my eating up, my NG feeds have been reduced. However Imy is allowed to eat pretty much whatever she wants and is currently still on TPN. But next week they're planning to stop her TPN completely and see how she goes with just eating. She wont have any enteral feeds. That sounds very daunting to me, but hopefully Imy will manage ok. Her mum thinks that she might be in touch with me herself soon and then hopefully I'll be able to visit her in hospital when she's feeling a bit better :)
This week I've listened to quite a bit of music. When mum played with Spotify we listened to Michael Buble (who mum likes more than me) and Pixie Lott (who we both love). I've also listened to Mika on my iPod on the buses on Fri. And I've listened to The Saturday's new album Wordshaker (which I received for Christmas from one of my Secret Santas) - I currently really like Ego which is going to be their next single. I've just discovered that Spotify have now made Cheryl Cole's album 3 Words and Rihanna's latest album Rated R available to the people who use Spotify for free, whereas it was originally just available to paying members. I've been waiting for both of those albums so have listened to a bit of Cheryl Cole's album but am looking forward to listening to more of it and I'm also looking forward to seeing what I think of Rihannna's album.
This week with my parents I've watched the final 2 episodes plus the outtakes of the first series of Gavin and Stacey and the first 2 episodes of the second series (which we've borrowed from the library). We're still all really enjoying watching it together :) And on my own I've watched 2 episodes of The Vicar of Dibley from my boxset and 3 episodes of the first series of Dragons' Den which I rented from Tesco DVD rental.
And the only film I've watched this week is St Trinians (which I had rented), with my parents. I thought it was quite good. Me and mum are hoping to go to the cinema with Claire on Wed evening to see St Trinians 2 :)
And on TV I've watched the following:
~ Great British Railway Journeys - I started watching this series with mum because she loves trains and railways. I said in my last blog post that the first episode was disappointing because most of the content wasn't actually railway related. We watched Tue's episode and then gave up on it.
~ Hannah: The Girl Who Said No To A New Heart - this was on TV on Tue evening, but I watched it on Wed. It's definitely worth a watch, as it's very thought provoking.
~ Nurse Jackie - this is a black comedy series from the USA. It was on the BBC every night last week and the remaining episodes will be on weekly from tomorrow (Mon). I wasn't sure about it at first, but now me and mum really like it. I'd recommend it.
~ Wife Swap USA - rubbish TV I know, but it amused me ;)
~ 3 Men Go To Ireland - I watched the second episode of this off our HDR and it was very funny.
~ Tracy Beaker Returns - I loved watching the original series of Tracy Beaker when I was younger and a new series has just begun after many years. So I'm watching it :D
~ QI - very funny as always.
~ Sugababes new music video for Wear My Kiss - I used to like the Sugababes, but have gone off them recently. I had to watch the first TV showing of their new video though. I wasn't impressed.
~ and I've also watched the music channels a bit this week too.
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.
Saturday, 26 December 2009
Update - pre-Christmas
Sorry for not updating my blog for a while. Rather than doing one long update, this update will be pre-Christmas (Sun 20th - Thur 24th). Then I'll write an update about Christmas Day and then get myself up to date with an update from Christmas day onwards. Hopefully it should be easier for you to read that way :)
Last Sun I went to my first AYME meet-up at Lucy's house. When I joined AYME I asked to be put in contact with my regional contact (RC) to hear about local meet-ups etc. I was told that there isn't a RC for my county, but Lucy was my nearest RC in a neighbouring county. She seemed really nice and we got chatting via email. Lucy then told me that she was organising a Christmas AYME meet-up and asked if I'd like to attend. So that was where I went on Sun.
Mum and dad gave me a lift to a town about 20 miles away and then I caught a direct train from there to Lucy's town (which took about 40mins). I was collected at the station by Lucy and her dad. Some of the people at the meet-up were a bit odd, but most of them were really nice and I tried not to be too shy, so chatted to a few people and got on quite well with one girl in particular. There were loads of new people there though (Lucy, her parents and her sister and then 8 other ME sufferers) so it was quite overwhelming. Most of the others are either too old for AYME now or don't really use it. We also did a Secret Santa. I gave one of my mum's knitted cupcakes, but I don't think that the girl I gave it to liked it. I received The X Factor Annual 2010, which I wouldn't have bought myself, but it was good to flick through. So I had a nice but tiring day - I was out the house for 8 hours in total though the meet-up was only for 4 hours. My train back was cancelled, but luckily I only had to wait 30mins for the next one. And I froze on the train journeys, brrrr.
During the car journey home that evening, I listened to the chart show on Radio 1. I was very disappointed that RATM were number one :( What a rubbish song! Never mind, hopefully Joe will be number one on Sunday.
I was exhausted on Sun evening, so when I got home I watched The Gremlins on DVD with my family. What an odd film!
I had a very busy day on Monday. I got up earlier than usual as I needed bloods taking at Hosp H (because my liver function tests were raised when checked during my stay at Hosp B). I couldn't believe the length of the queue when we got there though, there must have been 15 people waiting to see just 1 phlebotomist! So me and mum turned round and went home, planning to return later. I couldn't leave it any later to take my morning dose of Tacrolimus (one of my immunosuppressants), so I took some blood to test the level of that at home via a fingerprick and posted it off to Hosp B to process it, so I could then take my Tac.
The post came very late that day, but we got some Christmas cards and I got 2 Christmas parcels (from Lizzy and my cousin Tam). While we had lunch we watched The Snowman on DVD :) I love watching that as it's so Christmassy. I did notice though that when the little boy gets dressed, he doesn't put any underpants on! :P
On Mon afternoon we went to the local garden centre to buy some lights for our Christmas tree. Then we headed back to the hospital for my blood test and this time there was no queue at all! Apparently the phlebotomist I usually see has retired, so instead there was a new phlebotomist and a more experienced phlebotomist supervising her. They were rather iffy with me though. I'd not met either of them before, so told them how the lab usually fax my blood results through to Hosp B. I was told that the lab wont fax results! But they've been faxing mine to Hosp B for 3 years :P And then I told the new phlebotomist that the veins in my elbows were rubbish, but she asked to look anyway. Then she saw that they really were rubbish and got cold feet so the more experienced phlebotomist took my blood. I'm not sure what will happen when I return next as I got the impression that the new phlebotomist will soon be doing it on her own! Then I had to hold the cotton wool on to stop the bleeding, but they'd left the torniquet on my arm, which surely couldn't have been helping, so I undid it myself (I know how to after all these years of blood tests) and they looked so shocked! :P Hehe.
While we were at the hospital we called in to visit my nan, who was in good spirits :) We also bumped into my aunt (dad's sister) there, who can be quite overpowering and stayed for a lot longer than she originally said she would. Never mind. My aunt had celebrated Christmas day early with her family (as both of her children wouldn't be with her on the 25th), so she thought that on Fri to prevent my nan feeling guilty about not managing to get presents organised yet we should treat the day as her birthday, not Christmas. I understand that my aunt had already had her Christmas, but we wanted Fri to be Christmas for us. And my aunt was also trying to organise us all to visit nan on Christmas day, as she wanted us all to be there together. We wanted to go at a different time to her though. It all worked out ok in the end though :)
On Mon evening Claire came round. We had a yummy tea (pigeon) and then played on my Wii together :) After that me, mum and Claire decorated our Christmas tree together which was fun. It was snowing at the time, so we opened the living room curtains so we could watch the snow falling outside. It settled too and stayed for a few days :)
Here are a few photos of the snow out of the back windows of our house:
And here is a photo of the snow out of the front of our house after it had started to melt a bit:
We sang Christmas songs while decorating the tree - well mum and Claire did and I laughed at them :P Our tree looks a bit tackier than usual, but I like it. I'll post a photo of it on my Christmas update post.
On Tue I weighed myself and my weight was down a little, by 0.3kg, to 50.5kg. I emailed my dietician about my weight and she replied that evening. The plan now is for me to stay on 3 nights of feed per week until my weight reaches 51kg and then we'll try stopping the feed completely! :D I also enquired about trying some different high calorie drinks as I'm not getting on very well with the Fortisips and so my dietician has arranged for me to have some different samples of high calorie drinks and puddings delivered in the new year.
I didn't feel too well on Tue, in fact I've been feeling quite up and down this week. I suspect that is because I've been quite busy though. My tummy pains have still been bad, so I need to contact my consultant about that. And I've been getting headaches most days too :( They're not too severe, but they are annoying.
I discovered that Diana Vickers, my favourite from the X Factor 2008, will be touring in March, but after looking into it I realised that the venues she will be performing at only have standing tickets available. So I didn't buy any, but am hoping that if her album does well when it's released then she might perform at some bigger venues with seating, fingers crossed.
I watched some programmes on our hard disc recorder to try and free up some more space. I watched Jonathan Ross who was interviewing Rihanna (who seemed lovely) and Hugh Grant (who just seemed really cocky and arrogant). I also watched a programme about Pixie Lott and her music called Pixie Lott Takes Off. And on Tue I also watched a couple of DVDs. Shrek The Halls made me feel Christmassy and I finished watching the Tim Burton film I'd started called Ed Wood.
Then I went out in the snow (brrrr) to do some errands. I posted a rental DVD back, bought some parsnips from someone's house round the corner and delivered a Christmas present to a neighbour. And we also put all of the Christmas presents under the tree :)
We had all planned to go out to the cinema on Tue evening (me and mum to see Nativity and dad and Alf to see Avatar 3D), but that didn't go to plan. I didn't feel up to going out, so me and mum decided to stay in and watch Love Actually instead. So the boys set off to the cinema, but soon came home again because Avatar 3D was completely booked up! So instead of watching Love Actually with mum, together with my parents I watched Blackadder's Christmas Carol on DVD and a TV programme called The Funny Side of Christmas. And I got to bed quite early for me - about 11.30pm I think.
On Wed morn I slept through my 9.30am alarm and got up at 10.20am. I felt very sleepy though and continued to feel sleepy throughout the day. While I was still in bed that morning my mum went out and did a Tesco shop. And she got home before I got up!
Claire popped back round to deliver our homemade cards which she'd forgotten to bring on Mon. And she also lent me her 2 Wiimotes because she was going away for Christmas, so wouldn't be using them, but I quite fancied trying out 4 player on New Super Mario Bros Wii :) That afternoon me and Alf played on my Wii together again, which was good fun.
Hosp B rang me because they hadn't received any blood results from Hosp H (so they obviously hadn't faxed them through!) and when they'd rung the lab to chase them up, the lab claimed to know nothing about them! So I confirmed that I had had my bloods taken on Mon and the liver nurse I spoke to said she'd try again to get hold of the results. Later on Wed the liver nurse rang back and said she'd got hold of the blood results, phew! I was told that my LFTs were a bit lower than they had been, but were still high. And the level of my immunosuppressant, Tac, in my blood was low. That was a surprise because my Tac level had been stable for so long. I don't know why the level of that might have dropped, as I'd not missed a dose, but that could account for my high LFTs. So I was told to double my Tac dose (which seems a bit drastic to me as I suspect that might send my Tac level high above my target level) and have my bloods repeated on Tue.
Mum and Alf went to visit nan in hospital and while they were out I watched Jack Frost at home. I thought it was quite good, but am not sure if I'd watch it again. We had spare ribs for tea, which caused me some problems due to my lack of experience with eating. I assumed that everything but the bones were edible, but then I was told to avoid the gristle which completely threw me - I had no idea how to tell what gristle was, so how could I avoid it? And if I got some in my mouth by accident, my skills with my mouth and tongue aren't developed enough to easily eat the rest of my mouthful and just spit the gristle out. So my parents very kindly went through the meat on my plate for me and took the gristle out. And then to top it all off at the end of the meal I discovered that my braces had broken! What a day for that to happen - of all the days in the year, why Christmas Eve eve?! So I decided to ring the orthodontist for advice the next day.
After tea with my family I watched my favourite Christmas film - The Greatest Store In The World. That made us all feel very Christmassy :D Then we watched some Christmas music videos on the music channels before I went to bed at 11.20pm.
On Thur (Christmas Eve) I got up at 9am, which is very unusual for me! I felt tired and had tummy pains that day though. I phoned the orthodontist about my broken braces and they said that as long as they're not causing me any pain or discomfort, which they weren't then, then it'd be fine to wait to have them fixed at my next scheduled appt on Dec 31st :) Since then I've been having problems with them though. The problem is that the wire has popped out of one of the brackets, but now the wire is a bit further out than usual, so when I slept on that side the wire sliced my cheek. Owwww! I'm seeing if I can protect it with orthodontic wax, as due to a busy few days next week I wont be able to get to the orthodontist any earlier than Thur.
I did a jigsaw with mum that morning and then Chris and Sophie came round as it was Chris' 30th birthday. It was nice to see them and I also enjoyed winding Chris' up about how old he was! :P
When they left, me and mum went on a walk round the village to call in at the library and to get the Independent newspaper (which was sold out in the first 2 shops we tried, but then we got a copy in the third and final shop in the village). All the snow had frozen and turned into ice, so it was very slippery underfoot. And I slipped on the ice and fell over. I grazed one knee slightly, but didn't get any cuts thanks to my many layers of clothing protecting me. I think I've hurt a tendon in my right forearm though, from putting my hands out to save myself, because it's been quite painful over the last couple of days. Hopefully it'll feel better soon.
When we got back home it was a lovely surprise to find that Dad had got home from work early :) Dad and Alf popped out to Tesco to look for some cheap turkeys for Christmas dinner, but they didn't find any. So they bought a chicken for Christmas dinner instead and got a very cheap whole salmon, which we ate some of for tea (with baked sweet potato and sweet and sour sauce - yum!). And mum, dad and Alf had some champagne with peach juice for tea, but I didn't like the taste of the champagne at all - yuk! So instead I just had the peach juice, which I liked the taste of.
After tea I played on my Wii with dad and Alf which was hilarious! :D Then I helped dad to sort out one of his Christmas presents for mum - a digital photo frame keyring. In secret we charged it up and loaded some photos onto it.
Before going to bed we watched Victoria Wood's Midlife Christmas, which wasn't as Christmassy as I expected, and a great QI with David Tennant on it :) And then I went to bed at 11.30pm. I woke about 3 times during the night though.
Last Sun I went to my first AYME meet-up at Lucy's house. When I joined AYME I asked to be put in contact with my regional contact (RC) to hear about local meet-ups etc. I was told that there isn't a RC for my county, but Lucy was my nearest RC in a neighbouring county. She seemed really nice and we got chatting via email. Lucy then told me that she was organising a Christmas AYME meet-up and asked if I'd like to attend. So that was where I went on Sun.
Mum and dad gave me a lift to a town about 20 miles away and then I caught a direct train from there to Lucy's town (which took about 40mins). I was collected at the station by Lucy and her dad. Some of the people at the meet-up were a bit odd, but most of them were really nice and I tried not to be too shy, so chatted to a few people and got on quite well with one girl in particular. There were loads of new people there though (Lucy, her parents and her sister and then 8 other ME sufferers) so it was quite overwhelming. Most of the others are either too old for AYME now or don't really use it. We also did a Secret Santa. I gave one of my mum's knitted cupcakes, but I don't think that the girl I gave it to liked it. I received The X Factor Annual 2010, which I wouldn't have bought myself, but it was good to flick through. So I had a nice but tiring day - I was out the house for 8 hours in total though the meet-up was only for 4 hours. My train back was cancelled, but luckily I only had to wait 30mins for the next one. And I froze on the train journeys, brrrr.
During the car journey home that evening, I listened to the chart show on Radio 1. I was very disappointed that RATM were number one :( What a rubbish song! Never mind, hopefully Joe will be number one on Sunday.
I was exhausted on Sun evening, so when I got home I watched The Gremlins on DVD with my family. What an odd film!
I had a very busy day on Monday. I got up earlier than usual as I needed bloods taking at Hosp H (because my liver function tests were raised when checked during my stay at Hosp B). I couldn't believe the length of the queue when we got there though, there must have been 15 people waiting to see just 1 phlebotomist! So me and mum turned round and went home, planning to return later. I couldn't leave it any later to take my morning dose of Tacrolimus (one of my immunosuppressants), so I took some blood to test the level of that at home via a fingerprick and posted it off to Hosp B to process it, so I could then take my Tac.
The post came very late that day, but we got some Christmas cards and I got 2 Christmas parcels (from Lizzy and my cousin Tam). While we had lunch we watched The Snowman on DVD :) I love watching that as it's so Christmassy. I did notice though that when the little boy gets dressed, he doesn't put any underpants on! :P
On Mon afternoon we went to the local garden centre to buy some lights for our Christmas tree. Then we headed back to the hospital for my blood test and this time there was no queue at all! Apparently the phlebotomist I usually see has retired, so instead there was a new phlebotomist and a more experienced phlebotomist supervising her. They were rather iffy with me though. I'd not met either of them before, so told them how the lab usually fax my blood results through to Hosp B. I was told that the lab wont fax results! But they've been faxing mine to Hosp B for 3 years :P And then I told the new phlebotomist that the veins in my elbows were rubbish, but she asked to look anyway. Then she saw that they really were rubbish and got cold feet so the more experienced phlebotomist took my blood. I'm not sure what will happen when I return next as I got the impression that the new phlebotomist will soon be doing it on her own! Then I had to hold the cotton wool on to stop the bleeding, but they'd left the torniquet on my arm, which surely couldn't have been helping, so I undid it myself (I know how to after all these years of blood tests) and they looked so shocked! :P Hehe.
While we were at the hospital we called in to visit my nan, who was in good spirits :) We also bumped into my aunt (dad's sister) there, who can be quite overpowering and stayed for a lot longer than she originally said she would. Never mind. My aunt had celebrated Christmas day early with her family (as both of her children wouldn't be with her on the 25th), so she thought that on Fri to prevent my nan feeling guilty about not managing to get presents organised yet we should treat the day as her birthday, not Christmas. I understand that my aunt had already had her Christmas, but we wanted Fri to be Christmas for us. And my aunt was also trying to organise us all to visit nan on Christmas day, as she wanted us all to be there together. We wanted to go at a different time to her though. It all worked out ok in the end though :)
On Mon evening Claire came round. We had a yummy tea (pigeon) and then played on my Wii together :) After that me, mum and Claire decorated our Christmas tree together which was fun. It was snowing at the time, so we opened the living room curtains so we could watch the snow falling outside. It settled too and stayed for a few days :)
Here are a few photos of the snow out of the back windows of our house:
And here is a photo of the snow out of the front of our house after it had started to melt a bit:
We sang Christmas songs while decorating the tree - well mum and Claire did and I laughed at them :P Our tree looks a bit tackier than usual, but I like it. I'll post a photo of it on my Christmas update post.
On Tue I weighed myself and my weight was down a little, by 0.3kg, to 50.5kg. I emailed my dietician about my weight and she replied that evening. The plan now is for me to stay on 3 nights of feed per week until my weight reaches 51kg and then we'll try stopping the feed completely! :D I also enquired about trying some different high calorie drinks as I'm not getting on very well with the Fortisips and so my dietician has arranged for me to have some different samples of high calorie drinks and puddings delivered in the new year.
I didn't feel too well on Tue, in fact I've been feeling quite up and down this week. I suspect that is because I've been quite busy though. My tummy pains have still been bad, so I need to contact my consultant about that. And I've been getting headaches most days too :( They're not too severe, but they are annoying.
I discovered that Diana Vickers, my favourite from the X Factor 2008, will be touring in March, but after looking into it I realised that the venues she will be performing at only have standing tickets available. So I didn't buy any, but am hoping that if her album does well when it's released then she might perform at some bigger venues with seating, fingers crossed.
I watched some programmes on our hard disc recorder to try and free up some more space. I watched Jonathan Ross who was interviewing Rihanna (who seemed lovely) and Hugh Grant (who just seemed really cocky and arrogant). I also watched a programme about Pixie Lott and her music called Pixie Lott Takes Off. And on Tue I also watched a couple of DVDs. Shrek The Halls made me feel Christmassy and I finished watching the Tim Burton film I'd started called Ed Wood.
Then I went out in the snow (brrrr) to do some errands. I posted a rental DVD back, bought some parsnips from someone's house round the corner and delivered a Christmas present to a neighbour. And we also put all of the Christmas presents under the tree :)
We had all planned to go out to the cinema on Tue evening (me and mum to see Nativity and dad and Alf to see Avatar 3D), but that didn't go to plan. I didn't feel up to going out, so me and mum decided to stay in and watch Love Actually instead. So the boys set off to the cinema, but soon came home again because Avatar 3D was completely booked up! So instead of watching Love Actually with mum, together with my parents I watched Blackadder's Christmas Carol on DVD and a TV programme called The Funny Side of Christmas. And I got to bed quite early for me - about 11.30pm I think.
On Wed morn I slept through my 9.30am alarm and got up at 10.20am. I felt very sleepy though and continued to feel sleepy throughout the day. While I was still in bed that morning my mum went out and did a Tesco shop. And she got home before I got up!
Claire popped back round to deliver our homemade cards which she'd forgotten to bring on Mon. And she also lent me her 2 Wiimotes because she was going away for Christmas, so wouldn't be using them, but I quite fancied trying out 4 player on New Super Mario Bros Wii :) That afternoon me and Alf played on my Wii together again, which was good fun.
Hosp B rang me because they hadn't received any blood results from Hosp H (so they obviously hadn't faxed them through!) and when they'd rung the lab to chase them up, the lab claimed to know nothing about them! So I confirmed that I had had my bloods taken on Mon and the liver nurse I spoke to said she'd try again to get hold of the results. Later on Wed the liver nurse rang back and said she'd got hold of the blood results, phew! I was told that my LFTs were a bit lower than they had been, but were still high. And the level of my immunosuppressant, Tac, in my blood was low. That was a surprise because my Tac level had been stable for so long. I don't know why the level of that might have dropped, as I'd not missed a dose, but that could account for my high LFTs. So I was told to double my Tac dose (which seems a bit drastic to me as I suspect that might send my Tac level high above my target level) and have my bloods repeated on Tue.
Mum and Alf went to visit nan in hospital and while they were out I watched Jack Frost at home. I thought it was quite good, but am not sure if I'd watch it again. We had spare ribs for tea, which caused me some problems due to my lack of experience with eating. I assumed that everything but the bones were edible, but then I was told to avoid the gristle which completely threw me - I had no idea how to tell what gristle was, so how could I avoid it? And if I got some in my mouth by accident, my skills with my mouth and tongue aren't developed enough to easily eat the rest of my mouthful and just spit the gristle out. So my parents very kindly went through the meat on my plate for me and took the gristle out. And then to top it all off at the end of the meal I discovered that my braces had broken! What a day for that to happen - of all the days in the year, why Christmas Eve eve?! So I decided to ring the orthodontist for advice the next day.
After tea with my family I watched my favourite Christmas film - The Greatest Store In The World. That made us all feel very Christmassy :D Then we watched some Christmas music videos on the music channels before I went to bed at 11.20pm.
On Thur (Christmas Eve) I got up at 9am, which is very unusual for me! I felt tired and had tummy pains that day though. I phoned the orthodontist about my broken braces and they said that as long as they're not causing me any pain or discomfort, which they weren't then, then it'd be fine to wait to have them fixed at my next scheduled appt on Dec 31st :) Since then I've been having problems with them though. The problem is that the wire has popped out of one of the brackets, but now the wire is a bit further out than usual, so when I slept on that side the wire sliced my cheek. Owwww! I'm seeing if I can protect it with orthodontic wax, as due to a busy few days next week I wont be able to get to the orthodontist any earlier than Thur.
I did a jigsaw with mum that morning and then Chris and Sophie came round as it was Chris' 30th birthday. It was nice to see them and I also enjoyed winding Chris' up about how old he was! :P
When they left, me and mum went on a walk round the village to call in at the library and to get the Independent newspaper (which was sold out in the first 2 shops we tried, but then we got a copy in the third and final shop in the village). All the snow had frozen and turned into ice, so it was very slippery underfoot. And I slipped on the ice and fell over. I grazed one knee slightly, but didn't get any cuts thanks to my many layers of clothing protecting me. I think I've hurt a tendon in my right forearm though, from putting my hands out to save myself, because it's been quite painful over the last couple of days. Hopefully it'll feel better soon.
When we got back home it was a lovely surprise to find that Dad had got home from work early :) Dad and Alf popped out to Tesco to look for some cheap turkeys for Christmas dinner, but they didn't find any. So they bought a chicken for Christmas dinner instead and got a very cheap whole salmon, which we ate some of for tea (with baked sweet potato and sweet and sour sauce - yum!). And mum, dad and Alf had some champagne with peach juice for tea, but I didn't like the taste of the champagne at all - yuk! So instead I just had the peach juice, which I liked the taste of.
After tea I played on my Wii with dad and Alf which was hilarious! :D Then I helped dad to sort out one of his Christmas presents for mum - a digital photo frame keyring. In secret we charged it up and loaded some photos onto it.
Before going to bed we watched Victoria Wood's Midlife Christmas, which wasn't as Christmassy as I expected, and a great QI with David Tennant on it :) And then I went to bed at 11.30pm. I woke about 3 times during the night though.
Saturday, 7 February 2009
Snow and Japan preparations
I loved the snow when it first appeared on Monday, but now the novelty has worn off and I'm fed up of it disrupting plans. Yesterday I only had lessons in the first 3 periods, so the plan was for mum to come and collect me at 12.30pm. But as I got to school the snow was falling heavily and it kept up for a while. My first 3 lessons were ok and I got the final piece of my Environmental Systems coursework completed, despite being a bit distracted by the snow. But then I heard from mum that the snow was too bad for her to come and collect me, so I'd have to wait for dad to finish work. I expected this to be around 4 or 5pm, but he finished at 3pm. So I only had to waste 2 and a half hours at school, which wasn't too bad. Then yesterday evening my friend Claire was going to come round, but she couldn't get here because of the snow :( So I felt quite fed up for a bit yesterday evening, but then I rearranged all my furniture and started to tidy my room which made me feel a bit better.
My preparations for Japan are going really well - I can't believe it's only 5 days til I go! I'm an avid reader, so over the last month or two I've gathered together 9 books I've been recommended or have meant to read. I only want to take 3 or 4 to Japan, so on Thursday evening I read the first chapters of 8 of the books. I expected I'd only like a few of them, so then they'd be the ones I'd take to Japan. But I liked all of them! I've managed to narrow them down to about 5, but still have to decide which ones to take. One of the books I thought might be good to take with me is Middlesex, by Jeffrey Eugenides. Becky recommended another book by him, called The Virgin Suicides, which I read and really enjoyed. I ordered Middlesex from the library a couple of weeks ago, but it's not come yet, and I'm off to Japan on Thursday. So I'm not sure whether to buy a copy or wait to read it when I return from Japan.
My universal adaptor arrived in the post this morning as well as a parcel from my friend Lizzy with some travel bits for me to take to Japan - a journal, a small hairbrush, some small travel bottles to take toiletries in, and some shower caps! And 2 of the monthly magazines I subscribe too (Focus and Writing Magazine) came in the post this morning, so I'm going to save them to read on the plane.
This morning I went to the village Post Office to enquire about buying some Yen (for spending money in Japan), but they would have to send off for it and they and so couldn't guarantee it for Thursday. Then I went into my local town where I enquired at the Post Office there, only to encounter the same problem. They suggested I try the travel agents and luckily they had some Yen in stock. The exchange rate at the moment is just under 130 Yen to the Pound, so I bought 30,000 Yen for about £230, so I've got plenty of spending money. My nan gave me £40 of that, so I'm very grateful to her. And while I was in town I also visted the opticians as my glasses weren't comfortable, but they're much better now.
On the way back from town we picked my nan up and she's come round for the afternoon :) Then tomorrow morning I'm babysitting (well, for a 10 year old) from 9am til 12.30pm and then in the afternoon I'm hoping to go to the cinema with my mum to see Doubt (Meryl Streep's latest film). Around those plans I've also got to complete 5 biology experiment write-ups by Tuesday and do some more preparation for my mock English IOC on Monday. I'm feeling a bit more confident about the mock IOC now though and my York Notes guide to Wuthering Heights arrived in the post this morning.
Then on Monday I've got a full day at school, including my mock English IOC in the morning. Tuesday I've only got lessons in the first 2 periods, so I should be able to be picked up mid morning. And then Wednesday I've got the day off so I'll have plenty of time to pack and do last minute organising and hopefully I'll not be too tired for going on Thursday. I'm not so worried about the snow disrupting flights now as it looks like we've seen the last of the snow - at last!
My preparations for Japan are going really well - I can't believe it's only 5 days til I go! I'm an avid reader, so over the last month or two I've gathered together 9 books I've been recommended or have meant to read. I only want to take 3 or 4 to Japan, so on Thursday evening I read the first chapters of 8 of the books. I expected I'd only like a few of them, so then they'd be the ones I'd take to Japan. But I liked all of them! I've managed to narrow them down to about 5, but still have to decide which ones to take. One of the books I thought might be good to take with me is Middlesex, by Jeffrey Eugenides. Becky recommended another book by him, called The Virgin Suicides, which I read and really enjoyed. I ordered Middlesex from the library a couple of weeks ago, but it's not come yet, and I'm off to Japan on Thursday. So I'm not sure whether to buy a copy or wait to read it when I return from Japan.
My universal adaptor arrived in the post this morning as well as a parcel from my friend Lizzy with some travel bits for me to take to Japan - a journal, a small hairbrush, some small travel bottles to take toiletries in, and some shower caps! And 2 of the monthly magazines I subscribe too (Focus and Writing Magazine) came in the post this morning, so I'm going to save them to read on the plane.
This morning I went to the village Post Office to enquire about buying some Yen (for spending money in Japan), but they would have to send off for it and they and so couldn't guarantee it for Thursday. Then I went into my local town where I enquired at the Post Office there, only to encounter the same problem. They suggested I try the travel agents and luckily they had some Yen in stock. The exchange rate at the moment is just under 130 Yen to the Pound, so I bought 30,000 Yen for about £230, so I've got plenty of spending money. My nan gave me £40 of that, so I'm very grateful to her. And while I was in town I also visted the opticians as my glasses weren't comfortable, but they're much better now.
On the way back from town we picked my nan up and she's come round for the afternoon :) Then tomorrow morning I'm babysitting (well, for a 10 year old) from 9am til 12.30pm and then in the afternoon I'm hoping to go to the cinema with my mum to see Doubt (Meryl Streep's latest film). Around those plans I've also got to complete 5 biology experiment write-ups by Tuesday and do some more preparation for my mock English IOC on Monday. I'm feeling a bit more confident about the mock IOC now though and my York Notes guide to Wuthering Heights arrived in the post this morning.
Then on Monday I've got a full day at school, including my mock English IOC in the morning. Tuesday I've only got lessons in the first 2 periods, so I should be able to be picked up mid morning. And then Wednesday I've got the day off so I'll have plenty of time to pack and do last minute organising and hopefully I'll not be too tired for going on Thursday. I'm not so worried about the snow disrupting flights now as it looks like we've seen the last of the snow - at last!
Thursday, 5 February 2009
Concentration, Japan and proper snow!
Yesterday I returned to school. I wasn't too tired, which was good, but I really struggled with my concentration. I couldn't concentrate on anything yesterday - lessons, assemblies, meetings, homework, TV... Very frustrating. I've never noticed problems with my concentration before so I'll just see how it goes.
At school yesterday I had a brief meeting with Mrs M and it seems like everything is sorted for Japan! :D Insurance is all sorted at last, phew. All the relevant letters have been written which should hopefully get my medications and sterile water through customs. My consultant (from hospital B) has written a letter detailing why I need those things through customs and also outlining my medical conditions just in case I need any medical treatment while I'm over there. I'm going to take that with me and a copy has also been translated into Japanese by Miss I. So it's all looking good. I can't believe it's just one week til I fly. I'm very excited, but a bit apprehensive too. My travel towels that I ordered from Amazon at the weekend arrived yesterday and they're great. I've bought 2 (1 for my hands and face and 1 for showering) and they're very compact and light. At the weekend I also ordered myself a new game for my Nintendo DS (to play on the flights) and that arrived yesterday too. And I'm waiting for delivery of a travel adaptor.
I woke up this morning to proper snow :D We had a little on Monday, but I couldn't believe it today. And it's been snowing on and off all morning too. So we've got another snow day! I'm quite relieved as I should have been doing my mock English IOC this afternoon, but I didn't feel prepared for it. So now it's likely that it'll be rescheduled to sometime next week instead, so I'll have the weekend to prepare. I bought a study guide online at the weekend to help me, so hopefully that'll arrive in the post tomorrow or Saturday. Thanks very much for the Sparknotes link Becky, I was reading the info on there yesterday and some of it was really useful.
I've been looking at the local weather forecast and lots of sleet and a bit of snow is predicted for the next 5 days. It'd be nice to have some more snow days, but I'm a bit apprehensive as I don't want there to be any problems with our flights next Thursday.
At school yesterday I had a brief meeting with Mrs M and it seems like everything is sorted for Japan! :D Insurance is all sorted at last, phew. All the relevant letters have been written which should hopefully get my medications and sterile water through customs. My consultant (from hospital B) has written a letter detailing why I need those things through customs and also outlining my medical conditions just in case I need any medical treatment while I'm over there. I'm going to take that with me and a copy has also been translated into Japanese by Miss I. So it's all looking good. I can't believe it's just one week til I fly. I'm very excited, but a bit apprehensive too. My travel towels that I ordered from Amazon at the weekend arrived yesterday and they're great. I've bought 2 (1 for my hands and face and 1 for showering) and they're very compact and light. At the weekend I also ordered myself a new game for my Nintendo DS (to play on the flights) and that arrived yesterday too. And I'm waiting for delivery of a travel adaptor.
I woke up this morning to proper snow :D We had a little on Monday, but I couldn't believe it today. And it's been snowing on and off all morning too. So we've got another snow day! I'm quite relieved as I should have been doing my mock English IOC this afternoon, but I didn't feel prepared for it. So now it's likely that it'll be rescheduled to sometime next week instead, so I'll have the weekend to prepare. I bought a study guide online at the weekend to help me, so hopefully that'll arrive in the post tomorrow or Saturday. Thanks very much for the Sparknotes link Becky, I was reading the info on there yesterday and some of it was really useful.
I've been looking at the local weather forecast and lots of sleet and a bit of snow is predicted for the next 5 days. It'd be nice to have some more snow days, but I'm a bit apprehensive as I don't want there to be any problems with our flights next Thursday.
Monday, 2 February 2009
Slumdog Millionaire, Japan preparations and Snow Day!!
Yesterday afternoon me and my dad went to the cinema to see Slumdog Millionaire. It had been advertised as a feel good film, but it definitely wasn't. The majority of it was very sad and depressing as it told of the main character growing up in the slums of India. Some of it I struggled to watch. It did have a happy ending, but I wouldn't call it a feel good film. However, it was extremely well made.
Yesterday I also carried on with my preparations for Japan - just 10 days to go!! We'd been told that the accommodation where we will be staying doesn't provide towels, so yesterday I bought myself 2 travel towels off the Internet. I also ordered myself a new DS game (to play on the flights), and swapped an old DS game I was bored of with one my brother had completed. So we both got a new game for free :)
And today school has been cancelled because of the snow! :D The snow here looks quite pathetic, but my friend says it's heavier at school. And more is expected later. I'm surprised school is closed though, but I'm not complaining! Going to spend today relaxing and trying to catch up with some coursework. Last week I also arranged to have tomorrow off school, so I'll have a nice break with two days off together. Alf has the day off today too, as his school is also closed. My dad has gone to work though and my older brother Chris starts his new job today too (he's the manager of a bistro).
Yesterday I also carried on with my preparations for Japan - just 10 days to go!! We'd been told that the accommodation where we will be staying doesn't provide towels, so yesterday I bought myself 2 travel towels off the Internet. I also ordered myself a new DS game (to play on the flights), and swapped an old DS game I was bored of with one my brother had completed. So we both got a new game for free :)
And today school has been cancelled because of the snow! :D The snow here looks quite pathetic, but my friend says it's heavier at school. And more is expected later. I'm surprised school is closed though, but I'm not complaining! Going to spend today relaxing and trying to catch up with some coursework. Last week I also arranged to have tomorrow off school, so I'll have a nice break with two days off together. Alf has the day off today too, as his school is also closed. My dad has gone to work though and my older brother Chris starts his new job today too (he's the manager of a bistro).
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