Abdominal pains, gynae problems and orthodontics

I spent a week alone in June when the rest of my family went to Glastonbury Festival. Unfortunately over that weekend they were away I had horrendous abdominal pains that were constant and agonising. I didn't seek medical advice about them as I didn't want to be admitted to a new hospital (Hosp A, where I'd never stayed overnight before) while my parents were away. The pain went away completely after a couple of days and didn't return. I don't know if that was related to any of my medical problems or just one of those things. My consultant thought it was probably gastro related.

I can't remember exactly what was happening when I last posted, but my consultant at Hosp A had prescribed me two medications to try taking for my abdominal pains. Spasmonal was an anti-spasmodic that I had to take before every meal. That didn't help the pains at all. Amitriptyline makes the nerves less sensitive to pain and I had to take it every evening. That seemed to work well for a couple of weeks but then the effect wore off. When I told my consultant about the results of trialling those medications he was fine that I'd stopped taking Spasmonal and suggested I increased the dose of my Amitriptyline from 10mg daily to 20mg daily in the hope that that would help. He said he'd even be happy for me to take up to 50mg if I needed to. I've also started taking a fibre supplement most days (it's supposed to be everyday, but I don't remember everyday). Either one or both of those seem to have done the trick and my abdominal pains are now much more manageable. I usually just get tummy ache now rather than a pain, although I do still get bad days and can't work out why.

It was hoped that the Amitriptyline would help my sleep and nocturnalism too but it hasn't. I made a big effort in Aug to normalise my sleep pattern and kept it up for over a month, but it was such a struggle fighting my body. I'd hoped that if I went to bed earlier and got up earlier then my productive period which used to come from about 11pm and last to the early hours of the morn would come earlier, but it didn't, I just lost it completely. Then my sleep pattern started to slip a bit and I can't motivate myself to correct it again. I did have to temporarily though (although that was actually more a case of me going to bed late and being awoken early) as our next door neighbours had builders making a din every day from 8am til 5pm for over 3 weeks! My sleep pattern isn't as bad as it used to be, but it's not the same as 'normal' people.

I really can't remember how much about this particular health problem I've mentioned before, so sorry if I'm repeating myself. Before my transplant my periods stopped because I was so ill. Just after they returned when I was recovering after my transplant (so summer 2007), I was admitted to hospital on a few occasions suffering with intense abdominal pain. I was given IV Morphine for the pain each time. Lots of explanations were suggested from pancreatitis (which I'd had immediately post transplant), to adhesions (as a result of all my operations). In Dec 2007 I had an ultrasound scan which showed that I had an ovarian cyst. It was suggested that taking the pill would stop the monthly pain but because of my past liver problems my consultant wasn't happy for me to have a pill containing oestrogen, so I was started on a progesterone only pill instead. That kept the pain away. Unfortunately that pill caused my periods to become very heavy and irregular.

The gynaecologist who originally diagnosed me and started me on the pill hadn't offered me any follow up so I was referred to see a gynaecologist at Hosp A. On 31st Aug I saw her for the second time and together we came up with a plan of action. I was supposed to see her about 12 weeks before that but because my older brother, Chris, let me down with a lift very last minute, I had to cancel that appt and reschedule another one, but the waiting list was 12 weeks. The plan we came up with was that I'd have an ultrasound scan to see how the cyst was doing. If it had shrunk or disappeared then I'd come off the pill and see if my periods settled down on my own. I didn't want to just stop the pill without having a scan because I was scared of the pain returning. I also had some bloods taken to check my hormone levels. I had a pelvic ultrasound on 27th Sept and managed to confuse all the doctors because they couldn't work out what was what in my anatomy :P Unfortunately though that scan showed that I had cysts. My gynaecologist has requested a second scan on 5th Nov and another blood test which I think I'll be having next week. Then she'll arrange me an appt to discuss the results of the tests with her. I'm confident that she'll be able to come up with a good plan of action because she really seems to know her stuff.

I had my braces tightened at an orthodontist appt on 4th June and then again on 16th July. My braces are supposed to be tightened every 6 to 8 weeks but when I tried to make my next appt I was told that I wouldn't be able to be seen for another 10 weeks and then later I received a letter cancelling that appt and rescheduling it for 3 weeks later, meaning a 13 week gap between appts. I wasn't very happy with that because the less frequent the tightenings, the longer I'll have to have the braces for. However on 18th July my braces broke so I returned to the orthodontist on 22nd July for an emergency appt to get them repaired. I then had a good spell with them until they broke again on 21st Sept, so I had another emergency appt on 23rd Sept to have them fixed. I've got a proper appt coming up on 14th Oct to have them tightened. I'm going to ask my orthodontist again about when I'll be able to have them off because it clearly won't be Oct like he said last time I saw him. I suspect it'll be a while off yet because my gaps still haven't fully closed. I find my braces so frustrating though, as well as all the emergency appts to get them fixed when they break (it's a 60 mile round trip to the hospital), they also cut the inside of my mouth a lot which can be very painful.

I was seeing a hygienist at Hosp A but she didn't work the same days as my orthodontist so we'd have to make another 60 mile round trip there each time to see her. My mum told my orthodontist how she wasn't happy to do that, so he said I could find a more local hygienist, but he did want me to continue to see one while I had my braces. When I had a dental check-up locally this summer (which went fine) we enquired about seeing the hygienist there but she's private and charges £42 for half an hour! I wasn't happy to pay that as the one I was seeing at Hosp A was an NHS one, so we need to see if we can find an NHS one closer to home.

A busy few days

My older brother Chris has always been very unreliable. He was going to come round to see us on Tue but then on Tue when I phoned him he said he'd come round the next day instead. He didn't show on Wed either. I'm always surprised when he doesn't turn up, but I really shouldn't be after all this time! :P

On Sun night I had another dizzy spell so I got a GP appt for the following morn :) After looking in my ears, making me move my head and follow his finger etc he told me that I had viral labyrinthitis. I was so relieved to hear that it's nothing to worry about and isn't related to any of my other medical problems, phew! Apparently it occurs when a mild virus affects one of the balance centres which slows the signals down so they're not in sync any more. And that means that when you turn your head you feel dizzy. He was very surprised I'd not looked my symptoms up on the Internet - I'd never do that, I'm sure that would scare me to death! :P There is no cure but medicines can be given for the symptoms if necessary. Sometimes it goes withing 24 hours, sometimes it takes a week or so. But he thought mine was definitely on the way out, so it should go completely soon. I've had a few more dizzy spells since though, so I really hope it disappears soon. My GP also said that sometimes it reoccurs a second time so I've got to keep an eye out for that but if it does, the second time usually isn't as bad as the first. And while I was there we also reviewed all my medications.

On Mon aft me and mum went to see my nan. I took her a copy of The Family Jewels CD by Marina and the Diamonds and taught her how to play that through her laptop :) I also installed a new printer cartridge for her. We then put the music on in the background and me and mum helped my nan sort through all her books. She didn't get rid of many though and wanted to keep loads that me and mum disagreed with her about :P

While I was at my nan's I was disappointed to put my finger through my jeans, they've got a small hole in the back :( I hate shopping for clothes and always struggle to find ones that fit well and are comfortable so I was very happy to find 2 pairs of perfect jeans a year or two ago, but now one pair has a hole. I'm sure I'll put off shopping for some more for as long as I possibly can but I'll have to do it soon. The cuffs of my favourite hooded jacket and poloneck are starting to fall apart too. And while I was at my nan's I discovered holes in the socks I was wearing, but I don't mind about that - socks are easy to buy and I have plenty of pairs.

After we got back from my nan's I sent off an application for a new CEA card (the card that allows a carer into the cinema with me for free because I receive DLA) because they only last a year and my old one is about to expire. I thought I'd have to try to sort out a passport sized photo (I hate having my photo taken) but luckily I found one tucked away, phew!

As you'll probably know from reading my past blog updates there is a fantastic charity called AYME which supports young people with ME and has been invaluable to me since I was diagnosed with ME last Aug, especially the message boards where I can talk to other people who know what I'm going through. A couple of weeks ago a post was put up on the message boards saying they were looking to recruit some new voluntary peer support moderators (PSMs). The PSMs keep the board running smoothly, support users, provide information in response to posts and remove any inappropriate messages etc. Because I'm already very active on the boards I really liked the sound of this but didn't know whether to apply or not because I tend to commit to too much and then can't keep up with everything. But the day before the deadline I decided to go for it. I'll let you know when I hear anything.

On Mon eve I watched Young, Austistic and Stagestruck and the first 2 episodes of the new series of Bizarre ER on TV. I also watched 2 episodes of the second series of Outnumbered from my DVD.

On Tue in the post I received a bank statement and my new phone battery. Unfortunately replacing the battery in my phone hasn't fixed the problems. Although the new battery lasts longer than the previous battery did it still runs down in about a day. And I still can't send or receive texts or phone calls. Grrrr. It's so frustrating not having a working mobile. I tried swapping my SIM with mum's SIM to find out whether the problem was with my SIM or the phone itself. However my SIM worked in mum's phone and mum's SIM worked in my phone, but my SIM doesn't work in my phone - how odd! I think my best bet would be to go into a T-Mobile shop and ask for their advice, but the nearest one is in the city and I don't have any plans to go there at the mo and it's a bit far to ask mum to go just for that. I thought I'd try using an old phone for now so found 2 old Nokia phones in the house. Unfortunately neither of them work so I've put out a request on Facebook asking if any of my friends have a phone I can borrow until I get my phone looked at at a T-Mobile shop. It might be completely broken, but I'm not sure yet if it's going to be fixable or not. And I don't want to buy a new phone because I'm getting Chris' iPhone in Sept so I guess if my phone isn't fixable I can just use an old basic phone til then.

I didn't do much on Tue but did a few odd jobs like going to the local shop for the new Radio Times and sorting the dishwasher and washing out for mum because she was at work. I watched the music channels for a while during the day and a programme I'd recorded the previous night about a prison called Wormwood Scrubs.

I received a reply from my dietician at Hosp A saying that she's happy for me to stop the high calorie puddings :) I'm currently finishing up the ones I've got (I think I'll have my last one on Mon eve) and we'll then see how my weight goes without them. I think I'll be fine without them, but I'll let you know how it goes.

I heard that the page that me and Emma wrote for Transplant Kids has been added to the main website :) You can find it by going to the main TK page here, clicking on 'info' and then clicking on the red box on the right side of the page just before half way down. Or you can go directly to it by clicking here.

After my braces behaving so well for a while I wasn't happy on Tue when I realised that one of the brackets was cutting my lip. I put some wax on the offending bracket overnight to protect my lip and it's been fine since then :)

On Tue eve I watched Children's Hospital and Children's Emergency on TV. I also watched the last 3 episodes of the second series of Outnumbered plus all the extra features from my DVD.

That night I forgot to take my Amitriptyline for the first time. I don't think it makes any difference to my sleeping so wasn't worried there but was a bit fearful of getting more tummy pains the next day. I did get some the yesterday but they didn't last too long and weren't too painful so I think the Amitriptyline has probably built up a bit in my body. When I had those tummy pains I realised they were the first I'd had for a few days :)

Yesterday (Wed) aft I went into town with mum. While I was there I bought Sonic and Sega All-Stars Racing for the Wii (which was released down from £30 to £20 in the GAME sale) and Super Bust-A-Move for the PS2 (which was 99p in Cash Converters).

After that I headed to my physio appt. My physio had a look at my feet and my legs and I had to do some walking for her. She said that she thinks that the pain I'm getting in my heels isn't being caused by a problem with my feet because I'm not flat footed (my GP said I was, but I trust her opinions more in that area) but the muscles down the backs of my legs and feet are tight which could be causing the pain because my feet have to compensate for it when I walk. So I've got some calf stretches to do which should help, fingers crossed. She also gave me some general conditioning exercises to do at least 3 times a week. That'll be a challenge for me because I've never stuck at doing physio exercises before, but I'll give it a try. She suggested I set a goal to try to gradually build up the length of time that I do the exercises for and maybe set a goal to try to gradually work towards about being able to walk for a certain length of time. She wants to hear my goals when I next see her in 5 weeks time. She also told me that a colleague of hers had told her about a local ME clinic so she wondered if I'd heard of it. That's where I was diagnosed so I told her about my experiences with them - they couldn't offer me any more than a diagnosis and one appt with an occupational therapist due to a lack of funding. She suggested I should phone them to ask if they can offer me anything else (that's already on my to-do list) because the physio dept I'm being seen at is mainly for pain.

After my physio appt me and mum went to see my nan and I taught her the basics of how to use her new digital camera. And she insisted on paying for the Wii game I'd just bought because I do so much to help her! I did say that I couldn't accept the money but she wasn't having any of it, hehe.

When we got home I had an email from S (the transplant co-ordinator at Hosp A) saying she's spoken to the phlebotomist I see at Hosp H (my local hosp) for my bloods and that things should work similarly when I'm under Hosp A. However they don't use Tac kits so I'll have to have Tac bloods done with the rest of my bloods too. They'll send me a bloods letter before each clinic so my consultant will have the results by then. Because I have to have Tac bloods done at the hosp I'll have to delay taking my Tac but if I get my bloods done early I shouldn't have to delay it too much and that'll be fine because that's what the rest of their patients have to do. Because Hosp H don't process Tac bloods I'll then have to post that to Hosp A (apparently S is going to provide me with a box to send the sample in) to be processed there.

I chatted to my parents about this over tea and I was a bit concerned that S hadn't thought this through, so I emailed her with some questions about my Tac bloods that eve. If I've got to post the Tac to Hosp A why can't I take the blood via a fingerprick at home? I've got loads of lancets (finger prickers) so will only need the bottles. I need to find out how much blood they need too. If I can do it that way I won't have to delay taking my Tac. If taking Tac is delayed the levels in the blood drop and that creates more rejection risks. The doctors make out that delaying Tac for a few hours to take bloods isn't risky, but I've never done that (because I've always done my bloods at home via a fingerprick) and I've also never had rejection (98% of all small bowel transplant rejections do in the first 2 years after transplant). I suspect there may be a link there so don't want to start delaying Tac doses if it can be avoided. I also need to check that Hosp H have the right Tac bottles because when I ran out of the ones that Hosp B gave me I asked for one at Hosp H but they didn't have them. Maybe Hosp B and Hosp A use different Tac bottles. I also need to know how S is going to get the box for posting the Tac to me because I'll need that before the clinic. Hopefully S will reply soon.

I've been wanting to speak to my parents about all my other transition concerns for a while because my transition date (7th June) is getting closer and I'm really not happy about it. I asked to be told how things would work when I was completely under Hosp A but I've not been given as much info as I'd like and I'd like to be able to spot and then act on potential problems now, rather than when they actually occur. And the team at Hosp A (with the exception of the dietican) haven't proven themselves at being good at communicating with me either. Hopefully I'll be able to talk to my parents about it at the weekend.

Alf is trying to get stronger and beef himself up because he's really skinny. His favourite method of doing this is by standing at the bottom of the stairs, grabbing the landing floor and pulling himself up. I know this probably doesn't make much sense, it's hard to describe :P The other day Alf ordered himself something from Amazon that you attach to a doorway and then it gives you a bar that you can do chin-up type things on. Again this probably makes no sense, but it looks like this. It arrived in the post yesterday and he's really pleased with it.

Yesterday eve I watched the first episode of Junior Apprentice, Embarrassing Bodies: Kids, Lord Sugar being interviewed on Fri Night with Jonathan Ross and Autistic Driving School. Unfortunately our Internet was playing up so watching Embarrassing Bodies (a 45min programme) online took me 90mins and watching Autistic Driving School (a 60min programme) also took me 90mins!

Today (Thur) I went into town and my tummy pains were very bad. Luckily they eased off in time for me to go into Barnardo's to do an hour of volunteering. I'm trying to stick at it but it's so boring and monotonous. Mum popped in to see me during my hour of volunteering today because she was trying to avoid being spotted by someone she knew on the high street :P She'd not seen me volunteering before and couldn't believe how dull what I was doing was! There was only the grumpy lady from last week in and she didn't talk to me. Mum told me later that she hadn't been busy with customers, she'd just been sitting in the front of the shop reading her book - so she could have talked to me! So I just stood and hung clothes up for an hour. I really don't know what to do now, I don't enjoy it but feel like I'm doing something worthwhile and it's good to have something to do outside the house, so I feel like I ought to stick at it. I don't know if I can though.

When I'd finished volunteering I met mum in a cafe where we had drinks. I then bought some presents for a friend who's birthday is at the end of May and I bought myself a few packets of my favourite biscuits from M&S ;)

This eve I made a start on planning the organ donation talk I'm going to give to a group of Claire's students next Wed. I've not done much work on it yet but know have a rough outline so that's a good start :)

I also spoke to my friend Het on FB chat. She lives out of the nearest city in another direction so we don't see each other very often (it can only usually happen if I'm feeling up to going into the city and she's got a free day, which isn't very often!) but her study leave is starting soon (she's in year 12 at sixth form), so she's got some free time and wants to come round and see me. She's got a moped so is going to drive here and she's happy to do that even though the journey will take her about 45mins. It's really lovely to hear from someone (apart from Claire or Lizzy) who wants to see me and doesn't need me to do all the chasing and planning to make it happen :) She's going to be in touch again in a couple of weeks once she's got some exams out the way, so hopefully we'll be able to choose a day then.

I had fun trying out Sonic & Sega All-Stars Racing but found it quite tiring. And I enjoyed watching the latest episode of Outnumbered on TV.

While I've been writing this up I've listened to Diana Vickers' album, Songs From The Tainted Cherry Tree, on Spotify and am now listening to Pixie Lott's Album, Turn It Up, on iTunes. I found an interesting interview with Diana Vickers on the Internet which you can read here. I also found this interesting video on the Internet that goes behind the scenes of Ellie Goulding's latest music video.

I found out on the Internet that Selfridges in London have allowed 10 music artists to design a window display about one of their songs or albums. Marina did one based on I Am Not A Robot, so I had a look at the photos of that on the Internet. You can see more about the window displays including photos here.

I'm sorry this has ended up so long, I didn't expect it to be. I probably ought to try to write less but I find that so hard! :P My blog is now completely up to date for the first time in over a month :D

Getting up to date with April - part 4 (more day to day stuff)

Here's some more about what I've been up to recently :)

On Fri 16th April I got up earlier than usual and me and mum went to Catherine's house to see Catherine and her mum while she was back from uni for Easter. We had loads to catch up on so chatted for a while and mum, Catherine and her mum talked about knitting because they're all keen knitters. After lunch Catherine drove us into their local town for a look round the shops. We went into lots of charity shops (I think there were 7!), 3 knitting shops and a couple of other shops. Me and mum bought a lovely doll for Mia's (Lizzy's daughter) 4th birthday which is on Thur. We also bought Mia a card, I bought some Paracetamol and I bought a DVD called Kramer vs Kramer from a charity shop. Mum spotted a very exciting sock knitting book in a charity shop, but Catherine's mum got it first which disappointed my mum :( We stopped in a cafe for drinks and then headed back to Catherine's house. Before we left I lent Catherine a DS game and we played a card game called Slam together that we used to play at sixth form.

That evening I had a look at the cinema times because I was hoping to go to see a film called Whip It! (starring Ellen Page from Juno) but it had already gone from our local cinema after just being there for a week! So I'll have to wait for it to come out on DVD instead.

On Sat 17th April me and my parents went to a regional PINNT meet-up at Hosp A. I've been a member of PINNT since I first went onto TPN at 6 months old and they've been a great help and support to me and my parents over the years. We've not been to many local meet-ups but I was keen to go to this one in case my transplant experience could help anyone else. When we got there we had a buffet lunch. They didn't have any Marmite sandwiches so I tried some new sandwich fillings and found some nice biscuits and some petit filous. At this point people were just chatting to each other but I felt quite awkward because I didn't know many people. Most of the people there seemed a lot older than me but then I spotted someone across the room who looked a bit younger than everyone else, so I went over to say hello. I soon got chatting to J and found that she was really easy to talk to. When the structured activities started (quizzes, notices etc), me and J tried to carry on chatting. Later in the session there was a question and answer session so I asked anyone if they'd got any questions for me. I answered a few questions but then someone completely changed the topic so that was the end of that. There was a lady there who I got quite frustrated with because she kept talking all about her. How boring! So my experience of the day was a bit mixed, but I was glad I went. Me and J swapped details and are now keeping in touch on Facebook and via email. She lives nearby so we're hoping to meet-up again soon.

When we left the meet-up we went to the hosp concourse because mum remembered that she needed to buy a couple of birthday presents for people (a friend and her boss) as their birthdays were the following Mon. There was a Body Shop in the concourse so mum picked some nice gifts from there. While she was doing that dad tried out all the free samples in the shop, so came out v perfumed!

On Sun 18th April we went to the local carboot sale. The weather was very hot and so I felt quite lethargic at points. I bought 8 DVDs for £6 - Billy Elliot, Catch Me If You Can, Dreamgirls, Elf, Save the Last Dance, The Sixth Sense, The Spiderwick Chronicles and Stranger than Fiction. After the carboot sale we went to visit my nan in hospital. She'd not had any visitors so far that weekend but she said that we really cheered her up :) At this point the doctors had decided that she didn't have a chest infection (that had been suspected a few days before because apparently an xray had suggested that, but she never had any symptoms of a chest infection). When we visited she had a pain in her chest so she'd had some ECGs earlier that day because of that. As far as we knew they'd been fine though. While we were there a doctor visited her about the pain she was getting and decided it was probably muscular so gave her some more painkillers.

On Mon 19th April my Outnumbered DVD (series 1) arrived in the post :)

That morn me and mum headed into the city. I felt quite ill while we were out which I suspect was at least partly related to the heat. My heels and the balls of my feet were sore, I felt like I'd got a carpet burn on one foot, I struggled with overheating as had lots of layers on, I had a bad headache coming and going, I had bad tummy pains and I seemed extra sensitive to noise (like hand dryers). Me and mum looked round some shops and some charity shops. I bought a DVD (Speed and Speed 2) for £1, a PS2 game (Rachet and Clank) for £6 and a magazine (Games TM) to try for £4.50. I also bought mum 2 cassette tapes (Wet Wet Wet greatest hits and Rod Stewart) for her to listen to in her car because it has a cassette player rather than a CD player.

Then we headed to Hosp A for my hygienist appt. That went ok. My teeth were not quite as clean as last time (16% dirty rather than 12%), but not too bad. I said to my hygienist that that might be because I'm eating more now (and I'd just eaten my sandwiches and brushed my teeth in the hosp toilet, but I didn't tell her that!) as I thought she knew about my medical history. However she didn't so I had to explain to her. I didn't mind though as she's very nice and easy to talk to. She told me that my notes said that my braces would be removed in July (which was news to me!) but she thought that it would probably actually be after that because my gaps wouldn't be closed by July. I booked another appt for 3 months.

That eve dad went to visit nan so he let us know the latest news. There wasn't a discharge date yet but hopefully she would be discharged later in the week. She would have a chest xray the next day because they now suspected that she might have a broken rib (she has osteoporosis).

On the morn of Tue 20th April I went to the shop for the Radio Times and also went to the surgery. At the surgery I collected my high calorie puddings and gave in a repeat prescription. I mentioned my reaction to the suncream to a pharmacist so she said she'd ask the specialist skin doctor about it for me. All I really wanted to know was whether they could prescribe me a different sun cream (I get it on presc because the steroids I take to prevent rejection mean I have to be more careful in the sun).

That afternoon I tried to phone Lizzy to find out if her and Mia were still going to come round the following weekend, but she wasn't in so I left a message on the answer machine. Our neighbour who is also mum's friend called round so mum could help her out with her knitting. A friend of hers is thinking about setting up an arts and crafts group (probably starting in Sept) for under 4s and Mary had heard that she might need a helper, so wondered if I would be interested. I said that if her friend did want a helper then I'd be willing to give it a try. Not sure if I'd be able to manage it, but I'd give it a go. However Mary's friend might find someone else to help her out, so I'm waiting to hear more.

I moved my DVDs around because I'd run out of space for them in my storage units. So I moved my boxsets to a space on one of my shelves, leaving just my full length films in my storage units. There wasn't much spare room though and I knew my DVD collection would keep growing so I spoke to dad about it and he said he'd be happy to put another shelf up for me. I think I've decided where I want it, but am not completely sure yet. I'm sure it'll take dad a while to get round to it but I'd like it ASAP because now I don't have room for any more DVDs.

That evening I attended the teenage discussion group in the village. Again there was just me, V, K and the 2 leaders - A and B. There was lots of discussion at the start about politics and I was pleased to find that most of them agreed with my political views :) I'll be voting Lib Dems on Thur. V and K are currently in their A Level year so were talking about their exams. The main discussion was about identity and we had some interesting points of view to share about it. At the end we got onto talking about music and I mentioned my love of Mika. B said that she thinks Mika's great but always sings slightly out of tune! I didn't agree with that! :P Before we left it was agreed that we'd now meet fortnightly rather than monthly. Although I enjoy the discussion group I think I'd have preferred the sessions to stay monthly rather than fortnightly, but never mind.

To be continued...

Getting up to date with April - part 3 (day to day stuff)

Tonight I'm going to start writing up what I've been up to each day since my last update. It's been about 3 weeks since my last blog post, so I'm going to split this up into a few shorter posts, rather than doing one massive one.

On Mon 12th April I wrote my last blog update. That afternoon my mum gave a talk at the city library about Knit Lit - the knitting and literature group that she runs at our village library. She's currently visiting various libraries across the county to help them set up their own Knit Lits. When she got home she said that the talk at the city library had gone well and that the members of the public that she spoke to seemed enthusiastic about setting up and running their own Knit Lit group there. However the city library hadn't advertised the event very well, so mum had to go out into the shopping centre with her giant needles to find some more people. We had all been quite nervous that she might get arrested walking through the shopping centre on her way to the talk because the case she carried her giant needles in looks rifle shaped! Luckily the shopping centre was almost deserted when she walked through it in the morning and with her purple hair and scarf I think she probably looked quite harmless. Here's a photo for you:

On the morn of Tue 13th April I just went out to the village post office. That afternoon Chris and Sophie and Claire popped round. I enjoyed Chris showing me some of the exciting things his iPhone does because he's going to pass it on to me when he gets an upgrade at the end of Sept. I currently spend less than £10 a month on my PAYG phone so worried that getting a contract for the iPhone (to allow me to use the Internet on it) would be much more expensive. Contracts are expensive if you get an iPhone with it, but if you already have the iPhone you can pay just £15 a month for unlimited Internet and texts and 300mins (which would be plenty enough for me). I think that sounds like a great deal :D Just got to wait til the end of Sept now! And I had a nice time playing on the Wii with Claire :) Later in the eve Alf's friend Sam popped round. He used to spend a lot of time at our house but hadn't been round for quite a while so it was nice to see him again.

On Tue evening I heard 2 lots of news. The first was that my friend A from Hosp B is pregnant! What exciting news for her. I heard it from a friend that day but have chatted to A over the Internet since. And the second lot of news was that my nan had been admitted to hosp after feeling very unwell at home :( Then the thought was that she'd just have to stay in overnight, but it turned into a longer stay than that. She's feeling much better now she's home, but I'll write more about that as my blog progresses.

On Wed 14th April me and mum went into a local town. We browsed round the charity shops at first where I bought 2 DVDs (50 First Dates and Speed). I then attended a Pathways to Work appt which went ok. I told my advisor how the volunteering had gone so far, so she suggested that I try try to gradually increase my volunteering and if I can get to the stage where I can manage a 6 hour stint once a week (eek!) then I can maybe look for a small job. She gave me an appt to see her next in 2 months rather than just 1 month. After my appt I met mum in a coffee shop for drinks and then we headed to the supermarket. On the way we saw a phone shop with a notice in the window about hiring part time staff so we took the phone number down for Alf. However when he phoned up a few days later they had no vacancies.

Me and mum split up on our way to the supermarket but agreed to meet in there. Once I got into the supermarket I couldn't find mum and ringing her phone got no answer. Her route to the supermarket would just have been through the carpark (to put some more money on the car) so she couldn't have got distracted in a shop. Eventually I got through to mum on the phone and then we met outside the supermarket. It turned out that as mum was sorting the carparking out she realised she'd lost her phone. She looked everywhere for it and retraced her steps around town but with no luck. When she returned to the car she decided to look underneath the car incase it'd fallen out of her bag, but it wasn't there. However as she turned her head to the side she spotted it lying under a car 2 cars away! So when I'd been ringing mum's phone it had been underneath a car which is why I'd got no response! That could only happen to my mum! After that the supermarket shop was uneventful and we headed home.

On Wed eve Chris and Sophie popped round to borrow a couple of my DVDs. Sam came round again but Alf was quite grumpy so he knitted with my mum instead.

On Thur 15th April I had an early start for an orthodontist appt at Hosp A in the city. As we were walking through the hosp concourse mum spotted some knitters (who she didn't know), so she had to go over and start a conversation with them! Mum also met someone she knew (the mum of a boy who was in Alf's year at primary school) in the orthodontist waiting room. My orthodontist appt went fine. My orthodontist was happy with my progress and said that all my gaps (including a new one) will close. I'm not sure about the new gap but will quiz him more next time I see him. He changed some elastics that are wrapped around my braces, which made my mouth quite sore for the next few days. I was given another appt for 7 weeks time. Me and mum then had drinks in the hosp cafe and our packed lunches in the car.

On the way back from the hosp we called in at a big Tesco on the route that I'd never been to before. It was huge! While we were there we bought a get well soon card for my nan. Later that afternoon me and mum went to see my nan in hosp. Some of my second cousins were there when we arrived and they'd cheered my nan up. They told us that the following weekend they'd got an audition for a CBBC programme called Copycats. We've been in touch with them since then and they had lots of fun at the audition but are still waiting to hear back about the outcome. Once they'd left we chatted to my Nan who seemed to be in good spirits and she said she'd had lots of visitors. At that point she was hoping to be home the next day. We didn't time our visit very well so ended up getting back to the car at 5pm. It took us 40mins to get out of the hosp grounds (just 2 short roads to get back onto the main road - it would usually take about 2/3mins) because of horrendous rush hour traffic! That evening I bought Outnumbered series 1 on the Internet :)

To be continued...

Hospital Meme

I've stolen this meme from Emma, thanks.

HOSPITAL:

1. When did you first go into hospital?

Well I was born in hospital, but after that my first admission to hospital was when I had an intersucception of my small intestine (where it scoped in on itself so the blood supply was cut off and a large part of my small intestine died) at sixth months old. That time I was in hospital for about 6 months as it involved me being set up on TPN (IV feeding directly into my heart) because I hadn't got enough small intestine left to absorb vital nutrients from food.

2. What long term diseases/illnesses did you have/have you got?

My intersucception resulted in short gut syndrome and the treatment for that (TPN) led to me developing liver disease, which then led to my multi-organ transplant. I also have psoriasis (which I've had since I was about 6 and I'll probably have all my life), an ovarian cyst (which I've had for 2 years now) and ME (which I've had for just over 18 months so far).

3. How many times have you been in an operating theatre?

I got to 50 and then gave up counting, so more than 50 times so far.

4. Favourite thing to do when passing time in hospital?

I used to love reading novels to pass the time, but can't do that at the moment. So sometimes I do a crossword with my mum, play on my DSi or listen to my iPod.

5. How many outpatients appointments have you had?

Too many to count.

6. Worst thing about going into hospital?

Being cooped up in a cubicle/on the ward/inside the hospital and this is much worse if you're in isolation. Being unable to communicate with the outside world due to having no access to the Internet.

EYES:

1. Do you wear glasses?

Yes, I'm very short sighted.

2. If so, when did you start wearing glasses?

When I was 3! When I walked out of the opticians with my first pair of glasses mum tells me that I pointed at the sky and said "I never knew clouds looked like that" as I'd never been able to see them before. And before I got my glasses I would never go down the slide in parks but no-one knew why. After I got my glasses I was happy to go down them as before I was too scared because I couldn't see the bottom!

3. Can you read without your glasses?
No way.

4. How often do you get your eyes tested?

Annually.

5. Worst thing about an eye test?

I don't mind actual eye tests, but don't like finding out that my eyesight has deteriorated even more.

DENTAL:

1. Have you ever had braces?

Yes, 3 times. Once at primary school and once at secondary school I had removable braces, but they never helped. Now I've got fitted braces that I've had for a year so far.

2. Did you ever cry at the dentist when you were young?

When I was younger and was told that I needed a baby tooth extracting because it wouldn't fall out on it's own. I put that off for many years though and when I finally had to have it extracted (before my transplant because it would pose an infection risk afterwards) it went fine. And I have to admit that I cried at the orthodontist last summer when I had 4 teeth extracted because I was scared and then the injections were really painful.

3. Eye test or dental checkup?

Eye test.

4. Any dental treatment?

One baby tooth removed, 4 adult teeth removed, no fillings, 2 removable braces, 1 set (top and bottom) of fitted braces.

5. Worst part about visiting the dentist?

When the chair goes back I always feel like I'm going to fall off. And I hate the pain of injections. And in the past I've had horrible dentists and orthodontists, in fact my current orthodontist is very rude.

RANDOM:

1. How often do you have a blood test?

It depends. When I'm in hospital I usually have them daily, but when I'm at home and things are going really well I have them 3 monthly. At the moment they're fortnightly as my Tac level isn't quite right and my LFTs were raised a few months ago.

2. Is there anything you like about going to the dentist?

I don't hate it but I don't really like it either. My current dentist is lovely though :) And although I don't like my braces I really hope that the result will help my eating.

3. Name a thing you do when your nervous in any medical situation?

Pick my lips.

4. Have you ever gone under General Anaesthetic by a mask?

When I was little but after that I used to have nightmares about being put to sleep that way.

5. Have you ever gone under General Anesthetist by injection?

Since I've been old enough to have a say in it I've always had it done via injection rather than the mask. And I have a favourite anaesthetic too :)

A rough week

Sorry for leaving it so long to update and sorry in advance for the length of this :P If you've not yet read my update about the Mika concert last Sun then you can see it here. I've had quite a rough week with my health this week. I think it's just after the concert on Sun but I've never felt this bad for so long after doing something before, so it's frustrating. I've been more exhausted than usual, my headaches have been more frequent and painful, my legs have been heavier than usual and a bit sore too and my tummy pains have been more severe and rather than coming and going like they usually do I had them for about 3 days without a break earlier in the week. Sorry if this is too much information, but The Pill I'm on usually means I don't have periods but for some reason I've had a heavy one this week. So I'm not sure what symptoms are related to that. I'm also still very nocturnal. Luckily I've not had to cancel many plans but I don't think that going out most days this week has helped my health. I've mostly managed to keep my spirits up despite this but did feel very down last night after I was too unwell to make it out to the second meeting of the teenage discussion group in the village. But I soon felt better after speaking to some lovely friends on the Internet and watching a Mika DVD :)

Since mid-week my hands have been really dry and quite sore around my knuckles. I've had this before but I can't work out what causes it. I've wondered if it's triggered by some soaps I'm not used to and this time it seemed to come on after I'd been out and that day I did wash my hands in some public toilets, but I'm not sure.

On Tue I weighed myself as usual and found I'd put on 0.8kg :) Generally I'm finding eating more manageable at the moment but sometimes I still struggle with meals. My dietician was very impressed with my weight, but said to continue with the high calorie puddings for now. I don't really want to put on any more weight though. She wont be able to make the joint clinic next Wed, which is disappointing as she seems to be the one who has listened to me most about my tummy pains and understands how much trouble they're causing me, so I'd hoped that she'd be able to get my consultants to take me seriously. My dietician isn't worried about having to miss the clinic though because my eating and weight is on track. I'm quite nervous about the clinic next week because from past experience I'm not expecting to make any progress with my tummy pains. But we'll see. Mum is taking me to the clinic and dad might be coming too but wont know til Mon whether he can get the day off work or not.

This week I also emailed the psychologist from Hosp B. I saw her last Nov to start CBT in the hope that it would help my ME. She said we'd continue the work via email but would plan more appts too. I emailed her after the last appt in Nov to try to arrange a follow up appt and then again in Dec with some CBT homework she'd asked me to do, but I didn't receive any replies. So I emailed her again this week to see if she's still happy to do CBT with me. If I don't hear by next Wed I'll mention the lack of contact to my consultants.

On Wed I received a phone call from the physio dept at Hosp H, they said that they'd received a referral letter from Hosp A. The lady I spoke to asked me to join a weekly conditioning class?! I explained that I'd been expecting to see a physio one-to-one so she said she'd find out more and phone me back. I feel seeing a physio one-to-one would potentially be more beneficial for me because that way I would be able to explain about having to be careful not to overdo it etc because of having ME. So hopefully I'll hear back from them soon. I have no idea what the referral from Hosp A to Hosp H will have said and whether it will even have mentioned that I have ME! I'll also mention the physio problems at the joint clinic.

On Thur 4th it would have been Codie's 5th birthday if she was still alive. You can read a post I made in her memory here and see a photo here.

Since I was very young I've been a member of an organisation called PINNT which stands for Patients on Intravenous and Naso gastric Nutrition Therapy who support people who have to be fed either parentally (IV) or enterally. They've been a great support to me and my family over the years. We've been to some of their national and local meet-ups in the past and they now regularly hold regional meet-ups at Hosp A. We keep getting letters about them and keep ignoring them because mum and dad don't want to go. But because PINNT have given me so much support over the years I don't just want to abandon them now I'm off feeds (although mum and dad seem to be happy to do that). So I've persuaded my parents that we should attend the next PINNT regional meeting in April just to let them know how well I'm doing and say thanks for their help before leaving PINNT soon.

As I mentioned earlier I probably should have spent this week resting after the Mika concert but that's never going to happen with me! :P So I've actually had quite a busy week. On Mon morning I did some errands with mum. I accompanied her to the library where she cleaned but because our home Internet was down at this point I used the Internet at the library instead. Then I helped mum with a Tesco shop where I bought some liquorish for Alf's birthday and between us we bought a book for Lizzy's birthday to go with the things we'd already bought her. And then we called in at the cinema where we pre-booked tickets for me, mum, dad and Claire to see Alice In Wonderland 3D on Mon. We couldn't do it over the phone because I had my CEA cinema card. That evening I parcelled up Lizzy's presents (a novel, a book about baked beans and a phone sock), helped mum sort out some library stuff on the computer and wrote a letter to my AYME buddy Kate. And that night I had a very funny conversation with dad when I was in the bathroom brushing my teeth and he woke up and got up to use the toilet. He thought he'd been asleep for hours but in fact he'd only fallen asleep 5 or 10mins ago. And he didn't realise he was half asleep so tried to hold a conversation with me, which was very funny! :P

On Tue I didn't do much, but I did wrap Alf and mum's birthday presents and went round to the post office to post off Lizzy's parcel (for her birthday on Thur) and Kate's letter.

On Wed me and mum did my Tac bloods at home in the morning before I took my Tac and then went into town where mum met up with a fellow knitter for drinks. I wandered round the shops but didn't buy anything. I borrowed a DVD called Sunshine Cleaning from the library though which I'm looking forward to watching :) Then on the way back from town we went to Hosp H for the remainder of my blood tests. There was a different phleb there than usual and she didn't know what to do when I presented her with a bloods letter from Hosp B. So she phoned the more experienced phleb to ask her advice, but as soon as she realised it was me she said that she'd come and take my bloods as sometimes other phlebs struggle. My bloods went fine first attempt :) And I was given the number of the lab at the hosp so next time I need bloods doing I have to ring up an hour or two in advance and check with the lab that the more experienced phleb is in. And then I'll go to the lab instead of the outpatient blood test area so she can do my bloods :) On the way home we called in at the surgery to collect some of my tablets and I went to the post office to send off the Tac blood. Hosp B have redesigned the packaging for it making the whole parcel lighter and cheaper to send :)

Wed was Alf's 17th birthday, so that evening after he got back from college Chris and Sophie came round to join us for a birthday meal for Alf. I thought I wouldn't be well enough to participate in it but I was :) He opened his presents before tea and seemed pleased with them. Then we all enjoyed a nice meal - steak for dad, Alf, Chris and Sophie and quorn burgers for me and mum - we're not veggie but just aren't keen on steak which Alf had chosen to have for his birthday. After tea we all chatted for a bit and me and mum were surprised to hear that Sophie is going to become a Samaritan. We were a bit puzzled by that because we can't even hold a conversation with her (she's lovely just not very easy to talk to), so can't imagine her being a Samaritan. But she's passed the interview so will go on a training course this summer. We'll see. Alf went into town that night to meet up with his friends, but rather than staying out all night he came home early because his friends weren't around. So he's gone out tonight instead.

On Thur morning I had to get up at 8.30am (eek!) because I had an orthodontist appt in the city at Hosp A. On the way there I text Lizzy to wish her happy birthday :) My orthodontist was slightly nicer than usual but I suspect that might be because he was aware that they were asking patients to fill in surveys about their experiences. I was very honest in mine, so thank goodness they were anonymous! He didn't give me much time though and gave me some information that was different from what he said last time I saw him so now I have no idea how much longer I'll need braces for. Grrr. He was pleased with my progress though and I've got another appt for 6 weeks time. And he didn't tighten my wires so my mouth isn't sore :) There was someone else in the room though and they weren't introduced to me, so I have no idea who they were!

After my orthodontist appt me and mum went into the city on the bus. At the weekend a friend had given me a code to get some free photo prints from Jessops online, so I decided to use that to get prints of some photos from Florida, Japan and my sixth form May Ball. The code only worked twice which I wasn't expecting, so I ended up using another code that I'd received when I'd signed up with Jessops online and paying some money too. But it worked out well - I think I got 190 photos printed for less than £6 :D You could pay for delivery or have them delivered to a local store for free, so I had mine delivered to Jessops in the city and picked them up on Thur. The Japan photos came out really well but the Florida photos were a bit blurry. And in the city I also helped mum to buy herself a new phone because her 7 year old Nokia 3410 had finally died! She bought the simplest Nokia in the shop but it's a bit different to her 3410 so I've been teaching her how to use it :) Then we had drinks in a cafe before heading home.

Yesterday morn I spoke to Lizzy on the phone which cheered me up. Her and M are going to come round for the day to see us at the end of April if not before :) And I gave her Alf's email address so she can send him an Amazon voucher for his birthday. Yesterday mum ordered herself some birthday presents online - I don't think that's usually the idea! Her reasoning was that she doesn't expect many birthday presents from others, so she's buying herself some instead! :P She bought herself a new phone on Thur and then some DVDs online yesterday.

And I've not been out of the house today. Dad made me laugh this evening though with a display of his non-existent acrobatic skills. Very silly, but funny. And for tea tonight we had a nice family meal (minus Alf who has gone out to meet his friends) for mum's birthday tomorrow. Tomorrow evening dad is taking her out for a meal in the city. He's a bit rubbish at getting organised though, he was very chuffed at himself for getting some money off vouchers for the meal but we just all had a panic when he appeared to have lost them. Luckily they turned up though. And he hadn't thought to book a table but we persuaded him to phone up tonight to check that there will be a table for them and there will be.

The Internet has been playing up recently. We've had a few very small power cuts that only last a second or two, but sometimes they stop the wireless router working for a little while. But on Mon I really couldn't get it working again. It did after a few hours though. And the Internet connection tends to go very slow and sometimes disconnects itself at night when I try to use it.

I thought that the Royal Mail had lost one of the Tesco rental DVDs that I'd posted back as they usually get there within a couple of days. This one got there eventually though but it took a week!

I heard that a BBC website called Blast that I used to use the message boards of a lot and still use now but less often is going to close down because the BBC have decided to focus on quality rather than quantity. I've made some really good friends on Blast but luckily had already found 2 of them outside of Blast. And one of those friends helped me track down another mutual friend outside of Blast a couple of days ago. So now I'm not too worried about Blast closing because I wont lose my friends from it.

Dad fixed my desk lamp last weekend which I was really grateful for. I thought I'd need a new lamp but apparently you can replace the bulbs and dad just happened to have one the right size :)

At Christmas my uncle (dad's brother) said he'd make my mum a huge pair of knitting needles and she received them last week. Mum doesn't like this photo because she doesn't look very good on it, but I've not had chance to take a better one yet and this does show the size of the needles:
I'm currently considering buying this from eBay to go on my wall next to my bed. I love the quote :)

This evening I received an invitation from my friend Lou to her 30th birthday party this summer. I only know the date so far, the other details are still to be confirmed. But Lou doesn't live too far from me so I think I might try to go if I feel up to it. Lou is lovely but it sounds quite daunting because I've never met her before and probably wont know many if any other people at the party and I'm not always very good at being sociable especially with people I don't know well.

The only game I've played on this week is New Super Mario Bros Wii but I got frustrated at it so didn't go on it for long. And I bought myself a new DS game online called Yoshi's Island DS, so I'm looking forward to that being delivered :)

I've listened to a bit of music this week. I listened to Paloma Faith's album on Spotify but that was mum's choice as I'm not very keen on her voice and her music, Owl City's Ocean Eyes album on Spotify but I soon got bored with that, Ellie Goulding's Lights album yet again and some of an album called This Is The Life by an artist called Amy MacDonald who I'd never heard of before but listened to after some friends suggested that I might like her music. I think it might take a few more listens as the songs don't seem particularly memorable after one listen.

I've also watched the music channels quite a bit too. Avril Lavigne is back with the theme song to Alice In Wonderland which you can see here. I'm not very keen though, seems quite a plain song to me. I was very disappointed by the Black Eyed Peas' new song as I loved their last two (I Gotta Feeling and Meet Me Halfway). And there is far too much Justin Bieber on the music channels for my liking, I really don't get why he's so popular! I was interested to see Diana Vickers' new video for her debut single Once, but was a bit disappointed because I really thought the video would be quirkier. The song is growing on me though and gets stuck in my head with each listen :P

On Mon I was happy to see that Starry Eyed by Ellie Goulding had charted at number 4 in the official singles chart and that The Family Jewels by Marina and the Diamonds had charted at number 5 in the official album chart :) And this week Ellie Goulding's album Lights has been selling well on iTunes so hopefully it'll chart well tomorrow.

The only DVD I've watched this week is Pirates of the Caribbean: The Curse of the Black Pearl which I watched with my mum this evening. I'd watched it a long time ago but didn't remember it. I enjoyed it but it was a bit on the long side :P

I've watched lots of TV (live, on Internet catch-up services and on the HDR) this week due to not feeling very well. I skimmed through the Shockwaves NME Awards where Little Boots looked quite different presenting an award, Marina and the Diamonds performed with Biffy Clyro and Lily Allen performed with the Big Pink. I also watched some of the winter olympics where I saw a liver transplant recipient competing, a very good BBC drama series called Five Days, an odd BBC documentary called Why Did You Kill My Dad?, a couple more episodes of Tracy Beaker Returns, two more episodes of the very interesting Syrian School, a rubbish programme about Australia border patrol but I was bored, a BBC documentary about real life stories magazines called Secrets for Sale, another episode of Channel 4's One Born Every Minute, the first 2 episodes of a great new ITV series that I'd highly recommend called Married Single Other, an interesting ITV documentary called Seven Days In Traffic that also mentioned organ donation, Film 2010 which contained a great review of Alice In Wonderland, a Channel 4 documentary about real life stories magazines called My Daughter Grew Another Head and Other True Life Stories, Friday Night with Jonathan Ross which contained an interesting interview with Tim Burton and Johnny Depp, part of an episode of The Bubble, a great BBC documentary called Sue Johnston's Shangri La and I half watched an episode of QI XL. And last night I watched an episode of Embarrassing Bodies because Tori said on her blog that her friend would be on it talking about cystic fibrosis.

I follow lots of blogs and most of them are written by people who have been affected by transplants. 22 year old Rachy keeps a blog that I read regularly here. Last week she attended transplant clinic and was told that her time really is running out and she will die unless she receives a lung transplant in time. You can read her blog post about that clinic here. I know I talk about organ donation a lot but if you are reading this and haven't yet signed up to the organ donor register then please do so. Or if you already have please talk to your family and friends about it. It only takes 2 mins and you can save lives. Click here. Thank you.

Food, films, clinic and town

Thanks to everyone who read my last huge update. I'm really trying to update my blog more regularly now so I wont end up having to split one huge update up into many posts again.

On Tue night I was very nocturnal again, but last night I went to bed at about midnight. And you can probably tell by the time of this update that I'm nocturnal again tonight. So my getting into bed by midnight is not working at the moment :P

Yesterday my shoulder was loads better and has continued to improve though it's still a bit achy and stiff. I was very tired yesterday but haven't felt too bad today, which might have been related to getting to bed at a more sensible time last night.

After I wrote my last update on Tue I heard back from my dietician at Hosp B in response to the email I sent her with my weight that morning. She was very impressed and her reply included lots of exclamation marks :) That day I tried pancakes for Pancake Day and didn't like them at all because they were all rubbery! Today I was also a bit adventurous with my eating, I don't usually like trying new foods. I had a chicken and stuffing sandwich for lunch, which wasn't too bad and tried an anchovy in the evening - yuk! I've got a bit fed up of food and eating today though. Since I came off overnight feeds I've also been making a real effort with my drinking and am now drinking about a litre a day. It's probably still not quite enough, but it's much better than what I had been drinking. And I keep swallowing my elastics from my braces when I'm eating, whoops! :P

This morning I received a letter from Hosp A for a clinic appt with my consultant there (Dr W) for 10th March. When I last saw him last July he said he'd see me again in 3 months, March will be 8 months! This transition isn't going very well :P I emailed my dietician this evening to see if she knew whether this was a joint clinic (where the team from Hosp B are there too) because I'd heard there was one coming up, or just a Hosp A clinic. She said she thinks that there's a joint clinic on 24th March so suggests that I try phoning Dr W's secretary tomorrow to find out what's happening as there's no point me seeing him twice in one month! My next Pathways to Work interview has been rescheduled to the following week because that was on 10th March. And also in the post this morning I received my ESA letter confirming all the details of the changes now I've passed the ESA medical assessment and have been put into the support group.

One morning this week my mum received a fundraising letter from my old hospital, Hosp G. They are trying to raise money to build new cubicles because lots of the current ones are ridiculously small. To illustrate this to the general public, enclosed with the letter was a square of card to represent a cubicle and some stickers (to scale) to represent all the objects that need to be in the cubicle, so that people could try to see how well they all fitted in. Me and mum found this hilarious because we know very well from experience how little room there is in these cubicles after spending so much time in them. We're both going to donate some money.

Today I heard from I's mum that I is now home after her transplant :D

I found this on the Internet the other day, what do you think? I love this logo and it is now my profile photo on Facebook and Twitter :)

Yesterday despite feeling very tired I made it out to the cinema with mum where we saw Valentine's Day. It's not going to win any awards, but we really enjoyed watching it. It was very funny and featured loads of famous actors :) And some of the soundtrack featured Taylor Swift (she also acted in it), so I've downloaded one of her new songs from that, Today Was A Fairytale.

And mum and Alf went to the cinema this evening to see Avatar 3D. Alf saw it with Dad a while ago, but wanted to see it again so persuaded mum to go with him. She wasn't sure about it before she went, but then really enjoyed it. I didn't fancy it, I thought it would be too long for me.

Today I finished watching 2 DVDs which I'd previously started - Notting Hill and The Proposal. I really enjoyed both of them. I wanted to watch The Proposal when my parents were asleep tonight but was worried that I'd disturb them. So Alf suggested that I used the headphones and they worked really well :)

In town this afternoon I bought a DVD called Ghost from Sainsburys. A friend recommended it to me, so I'm looking forward to watching that and seeing what I think.

While I was in town I also bought myself the latest issue of the Radio Times. From that I discovered that series 2 of Nurse Jackie will be televised on BBC 2 later in the year, yay! And that although there wont be any more series of Gavin and Stacey there might be some one off specials. James Corden has promised one if this fan group on Facebook gets 3 million members, it currently has half a million. I also enjoyed reading about how the film An Education (which I've not seen yet but want to see) is based on a true story, but then the Radio Times went and revealed the ending! How stupid.

And the other thing I bought in town was a convector heater from Currys. I'm often very cold so my parents agreed to let me have a portable heater for my bedroom. And it's great, it warms the room up so quickly :D

The reason I went into town was for an eye test. It went well and my eyes haven't changed, so I don't need new glasses. I've been having annual eye tests since I got glasses at the age of 3 and I think this is the first time that my eyesight hasn't deteriorated. Yay! :D I didn't see my normal optician though, but a different one. She wasn't very talkative, but it went ok. She got very confused at one point about the prisms in my glasses, so I told her that I'm never straightforward! :P But it turned out that my usual optician had just written something down in a funny way.

On Tue night my mobile phone started playing up and displayed low battery and kept beeping low battery, but when I plugged it in to charge it it told me the battery was full. I've never had any problems with this phone before, so was quite worried. Luckily turning it off and on again fixed the problem. Phew!

This evening I heard very briefly from from Lizzy on Facebook. She had to go but said she'd phone soon to arrange a date for her and M to come and visit us. I can't wait :D And this afternoon I caught up with all my emails and PMs :)

I received an email from Amazon on Wed saying that my copy of Marina and the Diamonds' debut album, The Family Jewels, had been dispatched and the estimated delivery date is Sat. It's not officially released til Mon, so I should get it before then :) And the price for it on Amazon is now £8 but because I preordered it when it was just £5 I've only had to pay £5 for it. Today I discovered that The Family Jewels had just been put onto Marina's MySpace page so I could listen to it online. I've already listened to it through 3 times and I love it :D If you're interested, you can listen here. And me and mum have also listened to The Noisettes CD because we're seeing them in concert on Tue :D

Since my last update I've played more on New Super Mario Bros Wii and have made some more progress on it. And I've also played on Picross DS some more.

I've not watched much on TV over the last couple of days. I started watching a Horizon programme about geniuses but I couldn't concentrate on it so soon gave up. And I also watched quite an interesting Channel 4 documentary about gypsy/traveller weddings.

Tomorrow Claire is coming round, I've no plans for Sat and then on Sun we're going out for a meal with the extended family. Next Tue I'm seeing The Noisettes in concert and then that Sun I'm seeing Mika in concert again! :D

Busy busy busy

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

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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