2009 Meme

Thanks Posh Totty for this meme :)

1. What did you do in 2009 that you'd never done before? ... Managed for 6 months without artificial feeds. And I went away with school for 10 days without any artificial feeds and without my parents :D

2. Did you keep your new years' resolutions, and will you make more for next year? .... I don't think I made any this year. I'm not sure I'll make any resolutions for next year, but I do have hopes that you can see on this blog post.

3. How will you be spending New Year's Eve? ... I will be spending the afternoon at the orthodontist :( I was invited to a sixth form meet-up that night, but am not well enough to go so will probably spend the night at home watching TV.

4. Did anyone close to you die? ... No

5. What countries did you visit? ... Japan :D

6. What would you like to have in 2010 that you lacked in 2009? ... More energy

7. What date from 2009 will remain etched upon your memory, and why? ... That's a hard question, I really don't know about a specific date, but my memories of Japan will stay with me.

8. What was your biggest achievement of the year? ... Completing my International Baccalaureate Certificates :)

9. What was your biggest failure? ... At the time dropping maths at school seemed like a failure, but looking back on it dropping a subject was the only way I could keep going at school while I was ill. And I'm really disappointed that I wasn't photographed for the Gifts of Life photography exhibition, but that was out of my control.

10. Did you suffer illness or injury? ... Yup, ME. But that was ongoing from 2008.

11. What was the best thing you bought? ... A sofa and bigger TV (with an inbuilt DVD player) for my bedroom. And my new laptop :D

12. Where did most of your money go? ... DVDs

13. What song will always remind you of 2009? ... I'm not sure about specific songs, but I've enjoyed discovering some fantastic albums this year including 'Funhouse' by Pink, 'It's Not Me It's You' by Lily Allen 'Hands' by Little Boots, 'Taylor Swift' and 'Fearless' by Taylor Swift, 'The Boy Who Knew Too Much' by Mika, 'Turn It Up' by Pixie Lott and 'Overcome' by Alexandra Burke.

14. What do you wish you'd done more of? ... I know I should have rested more to stop my ME getting worse, but I can't just do nothing.

15. What do you wish you'd done less of? .... I know I shouldn't have overdone it so much, which lead to my ME getting worse. But what would I have missed out on then?

16. What was your favourite TV program? ... I rediscovered Absolutely Fabulous on DVD. And Ashes to Ashes series 2 was great.

17. Do you hate anyone now that you didn't hate this time last year? ... Don't think so.

18. What was the best book you read? ... I've not been able to read novels this year because of my poor concentration and memory :(

19. What was your greatest musical discovery? ... Taylor Swift, Little Boots and Pixie Lott.

20. What was your favourite film of this year? ... At the cinema - The Proposal, My Sister's Keeper. The Hangover and Up 3D I think. And of course, how could I forget Coraline! :D I've watched loads of DVDs too, but can't remember specifics. Recently I've really enjoyed watching Memoirs of a Geisha and Girl Interrupted though.

21. What did you do on your birthday? ... Claire came round so I spent the day with her and my family watching DVDs, playing games and Dad cooked tea on a BBQ. I also took Claire to meet my nan for the first time.

22. What kept you sane? ... My family and friends

23. Who did you miss? ... I often miss my best friend Lizzy because she lives 80 miles away so I'm not able to see her as often as I'd like to.

24. Who was the best new person you met? ... I can't just name one, but I've met some amazing people though the online ME communities I've joined.

25. Tell us a valuable life lesson you learned in 2009: ... ME is frustrating, but it's not the end of the world. It won't kill me and I will get better, I just don't know when, so need to try to be more patient til then.

Looking back at 2009 and forward to 2010

I've been thinking for a long time about what to put in this post as I wanted to make it really meaningful, but I can't think of anything meaningful to write. I thought that an easier option would be to write about what has happened to me this year and what I hope will happen next year, but my memory is awful :P After a bit of thinking I came up with some thoughts though.

This year:
~ My post transplant health has continued to improve
~ My eating has become more 'normal' and I managed 6 months with no artificial feeds at all
~ My tummy pains have become worse and more frequent, but I don't know why
~ I've had my 3rd transplant anniversary
~ My ME has become worse
~ I finally received a diagnosis of ME in August after being ill for 13 months
~ I joined AYME and Foggy Friends for support with my ME
~ I attended my first AYME meet-up
~ I went on an amazing trip to Japan in Feb
~ I completed my sixth form course and gained 5 International Baccalaureate Certificates
~ I cleaned and decluttered my bedroom and gave it a make-over
~ I promoted organ donation through the events National Transplant Week, Donor Day 2009 and the Save Jess campaign and also just generally without special occassions. I also spoke about organ donation to a large group of health professionals.
~ I attempted to attend the British Transplant Games 2009, but came home early because I wasn't feeling well
~ I've had just one planned hospital admission
~ I've got braces
~ I've stayed with my best friend Lizzy and her family twice
~ I began to write a blog and gained 7 followers
~ I've attended many concerts

Next year I hope:
~ My post transplant health will remain stable
~ I'll be able to come off enteral feeds for good
~ The cause of my tummy pains will be found and my tummy pains will be able to be controlled
~ My ME health will remain stable or improve
~ I will continue to promote organ donation. My friend Claire is a teacher and so I am hoping to give a talk to a group of teenagers about organ donation in the new year.
~ I will continue to write my blog regularly
~ I'll find a more productive way to spend my time than watching too many DVDs, lol
~ I'll start consistently spending less than my income
~ I will have a postive outcome from my ESA medical assessment and so will be granted the ESA benefit
~ To attend more concerts (including The Noisettes and Mika in Feb)
~ To attend more AYME meet-ups
~ To try to be less shy around new people
~ To possibly attend the transplant camp in the USA that I didn't manage to attend this year because of my health. That will depend on my health next summer though.

I also hope that my Nan's health improves so she can soon be discharged from hospital and get back home. And I hope that the health of all my family, friends and contacts in the ME and transplant communities will improve or at least stay stable. I hope that raising awareness of organ donation really will make a difference and hopefully stop 3 people dying in the UK each day while waiting for transplants.

And finally I'd just like to say thank you to my donor and her family for giving me the gift of life so I can look back on the year just gone and look forward to the year to come.

Ask Me Anything Answers - Part 2

This is part 2 of my Ask Me Anthing answers. Part 1 can be found here, so if you missed it please have a read and leave a comment. Part 3 (the final part) will be posted up tomorrow evening :)

Becky asked a few questions :)
'Have you ever had the 'why me'/'it's not fair' feeling about your transplant/tiredness?'
Of course, I don't think I'd be human if I hadn't thought that at points. I would assume I had that feeling at points before my transplant, but was so ill at the time that my memories from that period are quite patchy. I don't remember having it before my liver failure though when I was on TPN, because that was all I'd known so I just coped with it and didn't question it.

I have definitely had that feeling about the ME though. After having health problems for pretty much all of my life, once I'd had my transplant and recovered from that I'd definitely hoped that that would be the end of it all. I had about a year of fantastic health after I'd recovered from my transplant before I developed ME. It's more frustrating than anything else because now I've had the transplant I just want to get on with my life, but the ME is getting in the way of that. I do try my best though not to let it stop me, but it's difficult.

'Did your friends in sixth form know about your transplant? If not (I have a feeling you said that they don't somewhere, although I may be imagining that!) why didn't you want to tell them, and has in been difficult to explain hospital trips/tablets etc? If you did, how did they react to it?'
When I started at sixth form I made the decision not to tell any students about my transplant. I let my teachers know though for safety reasons just in case something happened when I was in their lessons. I decided not to tell any students because I wanted a fresh start and didn't want sympathy or to be treated differently because I'd had a transplant, I just wanted to be normal. I'd never had that chance at my previous secondary school as the jaundice from my liver failure couldn't be hidden and felt I was treated differently because I was ill. I'm also quite a private person and knew that I might tell some friends at somepoint, but if so it would have to be people I trusted, I didn't want everyone to know about my health. And at the start of sixth form I didn't know who I could trust and who would be my closest friends. As sixth form progressed I wondered if I'd made the right decision and did wonder about telling friends sometimes, but didn't know how I'd do it and how I'd explain why I'd not told them before.

My consultant, Dr G, at Hospital B understood how important sixth form was to me, so always did his best to arrange my clinic appointments and inpatient stays during school holidays so I didn't have to miss much school at all. And if I did occassionally have to miss a day of school I just said it was for a dentist appointment or said I'd had a cold or something. By the time I started sixth form 10 months after my transplant my tablets had decreased significantly and so I only had to take them twice a day, which I did in the car on the way to school and in the evenings, so no-one ever saw me taking tablets at school. Sometimes it got a bit tricky when friends were discussing their year 11 proms as I'd not attended mine, but I just made out that that was my choice, rather than admitting that I'd not been well enough. And discussing GCSEs was interesting as I'd only got 6. But I just admitted that I'd been ill then (and in other tricky situations) and no more questions were asked.

My holiday to Florida in March 2008 was granted for me by the Make-A-Wish foundation. However I just told friends that it was a family holiday and didn't mention Make-A-Wish's part in it. For my birthday later that year though I asked for donations to the Make-A-Wish foundation instead of presents, so wasn't sure how to explain that to my school friends. I explained to a couple of my closest friends, who I thought might want to get me something for my birthday, that the Make-A-Wish foundation had organised the holiday for me because I'd been very ill before I came to sixth form and left it at that. My friends were fantastic in not asking any further questions, I think they knew that if I wanted them to know more then I would have told them, and they respected that.

The hardest thing to keep hidden was my illeostomy which I had until the summer between year 12 and 13, so I had that for a year of sixth form. I managed though, but it could make some loud noises in quiet lessons and needed me to leave lessons sometimes to empty the bag.

I decided to tell my closest friend from sixth form, C, last Christmas when I went to her house during the holiday as we would be going to Japan together so I thought it'd make things easier if she knew. And I definitely trusted her. She took it really well. She understood why I'd not told her before or told anyone else and she was really pleased that I trusted her enough to tell her and that she was the first person from sixth form that I'd told. And she said she wouldn't tell anyone else and I knew I could trust her. I think that definitely made our friendship stronger and it also meant I didn't have to hide anything from her any more.

It was interesting going to Japan because I had to get my four 1 litre bottles of sterile water through customs (to drink on the plane journeys because I can't drink normal tap or bottled water). I had a medical letter so we didn't have much trouble, but I'm sure some of the students in our group wondered why :P No-one asked me anything though and so I didn't tell anything. In Japan I was sharing a room with C, another friend A and another girl. I took my tablets, boiled up my water etc and no questions were asked by the 2 girls who didn't know about my transplant. I did tell A part way through the trip though because I trusted her and thought she deserved an explanation. She took it much more matter-of-factly that C had and just accepted it with no questions or anything. I never told the other girl in our room anything though because I didn't feel I could trust her.

I also tried to keep my ME hidden at first, but that was much harder as it affected me much more day-to-day than my transplant had. C was the only friend I told about that while we were still at sixth form, but I did announce it to all my friends on Facebook as soon as I got a diagnosis (August) though because I was tired of keeping secrets and keeping things hidden. I have also quite recently mentioned my transplant a couple of times in my Facebook status because, like I said, I don't want to keep things secret any more. And also when I wrote in my Facebook status about the need for more people to sign the organ donor register I thought mentioning my transplant might make my friends more likely to sign up.

I'm almost completely comfortable telling people about my ME now but am still a bit cautious when telling people about my transplant. I have to get to know them first, I wont tell strangers. I told a friend I met through an ME forum on MSN a few weeks ago and he took it really well. And telling him my story persuaded him to sign the organ donor register :) I chat to a few people on ME forums at the moment and one of them asked me last week what I'd been ill with in the past, because I'd mentioned I'd only got 6 GCSEs due to illness. I wasn't sure whether to tell her anything or not because I don't know her very well. But I did and then asked her to consider joining the organ donor register. She is finding out more about organ donation at the moment and has been talking to her family about organ donation :)

'Can you stay anywhere other than your house (eg. friends' houses, relatives) with the NG tube/other medical things and abbreviations that I forget!'
Don't worry about remembering all the medical terminology Becky, I only know it all because I've grown up with it, so I don't expect you to remember it all :)

Before my transplant I was on TPN 7 nights a week. I went on 2 school trips with primary school (when I was 9 and 11) and my dad just came with me as a parent helper and he helped me sort my TPN out too. Instead of staying in the dorms with everyone else me and dad just had our own room.

When I was at secondary school sleepovers were very popular and I didn't want to be left out. So I took my TPN to sleepovers as the pump and feed bag fitted into a small ish rucksack. It was very heavy though as each TPN bag (I had one a night) contained 2.5 litres of TPN! Beforehand my mum would visit my friend's mum, check them out and if she was happy for me to sleep there (which she always was) she'd explain everything to the mum. Then the sleepover would go ahead as I could do all my TPN myself by that point. I'd get connected at home as that needed to be done under quite sterile conditions and then go to the sleepover with my rucksack. In the morning I'd disconnect myself at my friend's house. I never had any problems apart from one morning when the cap on the end of my central line cracked and so blood started coming back though it! I wasn't worried though as it'd happened before (but always at home) so just clamped the line and rang my mum who came with a new cap. It gave my friend and her family a shock though, lol! And those sleepovers were sometimes with up to 8 of us :D My friends were so accepting of it all though and I remember once I was allowed to try just 6 nights of TPN a week giving me a night of freedom. So on one of those nights of freedom I went to a sleepover without my TPN which I was very excited about. My friends didn't even notice the difference though so that shows how accepting they were of my TPN.

Since my transplant I've not stayed away anywhere with my enteral feed, but could do if I wanted to because it's so much easier than TPN (doesn't need sterile conditions to set up and disconnect). Because my enteral feed is more flexible than my TPN (I can go without it if I want to some nights) I stayed with my best friend Lizzy for the first time in August, but just didn't use my enteral feed the 2 nights I was away. I'm hopefully going to stay with her again soon, so will probably just have 2 nights off enteral feed again if I'm not completely off feeds by then. And I didn't need feeds when I went to Japan, which made that all a lot easier!

Tablets have never been a problem because I've sorted them all out myself from quite a young age, so can manage them fine on my own when I'm away from home.

And I've been on family holidays all my life as when we holiday in the UK the delivery company will deliver the TPN or enteral feed to wherever we are staying. We even got TPN delivered to Holland once I think. And when we went to Florida last year I had some nights off enteral feed but still needed it every other night, so we just got cleared for excess luggage and took the feed with us :D

'Do you have any plans to study more?'
I'm not sure. See 'Would you like to study at university?' here for more details. I loved studying before I became ill pre transplant and studying was everything to me. But since my transplant I've not enjoyed it as much but I don't know if that's because my priorities have changed/because I'm older/because the subjects have become more advanced... If you'd have asked me this before my transplant I would never have doubted that I'd go to university to get a degree, but now it doesn't seem as important to me.

'Favourite Pixar Film?'
Quite a tricky question, but probably Monsters Inc :)

And although this wasn't asked I've been thinking about my favourite film recently. I can't decide on just one, but think I could probably pick two - Little Miss Sunshine and Juno :D If you've not seen either/both of them, then I'd highly recommend them :)

'Favourite Mika Song?'
That's a mean question making me choose just one! I love so many of his songs. But if I had to choose just one favourite Mika song I think it would have to be 'Blue Eyes' from his Songs For Sorrow CD and The Boy Who Knew Too Much album. I can't help singing along when I hear it as it's so catchy and it's the song that brings back most memories from the Songs For Sorrow acoustic concert :D And my mum loves it too so we often dance around the room to it :D You can listen to it here if you click on the play button in the player in the top right. I think it's best listened to loud :D

However I'm currently also really enjoying listening to 'Good Gone Girl' from Mika's latest album, The Boy Who Knew Too Much, and think that it might be challenging 'Blue Eyes' for my favourite Mika song! You can listen to it here.

Ask Me Anything Answers - Part 1

I've now answered all of the Ask Me Anything questions, but because I've written loads I think I'll split my responses up into a few posts, so as not to overwhelm you :) I've answered the questions in the order I received them. This is part 1 and there will probably be 3 parts in total :D

Emma asked 'How many tablets do you take each morning and night?'
When I first came home after my transplant I had to take over 80 tablets each day, but now I don't need many at all :) Currently I take 5 tablets each morning and 4 tablets each evening.

Every day I take:

• two 1mg Tacrolimus capsules and one 5mg Prednisolone tablet - which are my immunosuppressants that I take to prevent rejection
  
• one 2mg Loperamide capsule - which slows down my gut because my transplanted small bowel doesn't have all the nerve connections that a normal small bowel would have, so peristalsis (the action of pushing the food along using muscle contractions) doesn't occur
• one 25mg Losartan tablet - which helps to keep my blood pressure low as high blood pressure can occur as a result of the Tacrolimus and can damage transplanted organs, I think
• two 300mg Ursodeoxycholic Acid tablets - which regulate the bile flow in my transplanted liver
• two 150 microgram Cerazette tablets (a progesterone only version of The Pill) - which I take because I have an ovarian cyst, which isn't transplant related
  

I will be on Tacrolimus, Prednisolone, Losartan and Ursodeoxycholic Acid for life. Hopefully I won't need the Loperamide and Cerazette forever.

Jessica asked a few questions :)
'What was your favourite subject at school?'
Through primary school and secondary school my favourite subject was maths. I loved the way that it was very logical and answers were either right or wrong, with no grey areas. I took a higher paper in both my year 6 and year 9 SATs and sat my maths GCSE a year early (year 10 instead of year 11). As well as having maths lessons at school I also had a private tutor from the end of primary school until I became ill before my transplant, because I enjoyed maths so much. Just before I got my tutor my parents asked me what I'd like to do for a hobby. Did I want to have horse riding lessons like some of my friends? I said I'd like to have extra maths lessons, lol!

When I began the International Baccalaureate I started off doing higher level maths, but I hated it. I don't know what had changed, but I couldn't keep up with it and couldn't see the point in it. It was all theoretical and none of it could be applied to anything. So I dropped down to standard maths and then when I decided to drop one of my six subjects after developing ME and struggling to keep up, it was maths I dropped because it was the one that I was getting the lowest grades in and enjoyed the least.

In sixth form I was very lucky to have the chance to learn Japanese and that quickly became my favourite subject. It was quite a challege as I'd always struggled with learning languages before (French for a few years at primary school and German for 3 years at secondary school) and Japanese was especially difficult with 3 different alphabets. But I loved the challenge. I was always much more confident with reading and writing Japanese rather than speaking it. I've not studied Japanese since I finished sixth form back in May, but have kept all my notes and hope to continue learning Japanese at some point in the future.

'Do you have any particular jobs in mind?'
I quite like the idea of being a journalist in theory as I enjoy writing, but sometimes struggle with the imagination aspect of it, so I think journalism might be quite a good job for me. I think I work well with pressure and deadlines (when my health is good), but probably need to look into getting some work experience in this field before deciding whether or not that is where my future career lies.

And I quite like the idea of working with children too, but I'm not sure in what job. I've considered primary school teaching, but am aware now that there is lots and lots of paperwork involved which the teachers I know don't like at all. I can't imagine I'd like working in a nursery with so many children as it sounds quite hectic. Hmmm. My Mum has a friend who is a Nanny, which I quite like the sound of, so I might quiz her a bit about that. Again I think I need to get some practical experience first.

'Would you like to study at university?'
The only subject I can see myself studying further is Japanese. I think that you have to really enjoy a subject to study it solidly for 3 years and the only subject I really enjoyed at sixth form was Japanese. When I was considering going to university I went to visit one of only a few universities which offers Japenese at degree level. The course sounded fascinating but it also sounded like a lot of work. It was then that I realised that I wasn't well enough to go straight from sixth form to university. I'm still not sure about whether I will go to university when I'm better or not. I can be sociable, but sometimes I just prefer to be alone and the idea of being surrounded by other students 24/7 at university scares me a bit, lol. It's not something I need to think about now though, so I'll see how I feel when my health is a bit better. If I do go to university in the future I think it will be to study Japanese.

'Where do you see yourself in 10 years time?'
This is hard! I'd like to be in a relationship that I'm happy with. Marriage isn't important to me though. I'd like to have a child or two, or be considering having children. And I'd like to have a dog. I'd like to be healthy and not have to worry about my health. I'd like to have a job I enjoy, but I don't know what it might be yet. I'd like to have travelled more, but ideally be living in or very close to London :D

'Where did you get your haircut?!'
I've answered this in the comments on this post :)

'Do you have any pets?'
No unfortuntely :( I've had pets in the past - my dad had a border collie when he met my mum and she survived until I was a baby, we had 2 cats when I was small but they both ran away one week after the other, I got loads of stick insects from the school science department when I was in year 7, I had a hamster when I was about 12 I think and we had a cat when I was about 13 but he ran away. So we've not had much luck with pets in our house, don't think cats like us much!

Now my parents say that me and Alf can't have any pets while we live in their house as pets are too much work. We've tried arguing and got round it a few times as you can see from the pets list above (stick insects, hamster and cat were exceptions) but they're sticking to it now. I've always wanted a dog, so am definitely going to get one when I have a house of my own. Before my transplant I wanted a pet ferret and when I was very ill my dad actually promised that I could have one when I was better. But then my consultant said no :( I don't really want a ferret any more as I've kind of gone off that idea, but when I've mentioned that promise to my parents in the hope of getting some kind of pet, they both claim to know nothing about it!

'I don't really think this is the kind of thing that is appropriate to share online and perhaps too personal...but I was wondering(so thought Id let you know my thoughts!) about your donor and their family. It would be interesting to hear what made the family make such an amazing decision at a difficult time, and the circumstances. I certainly wouldn't feel it was something Id want to share online if I were you.'
I know quite a bit about my donor and her family so I'm going to have a go at responding to this as best I can. I'm going to use any initials instead of names though, as I feel that would be most appropriate. My donor, E, was 19 when she died very unexpectedly from a brain haemmorage. E was the youngest of 3 sisters and both of her older sisters work in the medical profession (J is as a doctor and C is as a nurse), so organ donation was something the family were aware of and had discussed. My donor's family were aware of E's wishes to be an organ donor, so the decision wasn't too difficult for them.

It is really important that when someone signs up to the organ donor register that they also talk to their family about their wishes because it can make the decision about organ donation so much easier for the family if something happens to their loved one and they know what their wishes were.

'Perhaps it might be better to ask 'How did you feel to be a recipient of an organ/organs?''
This is a tricky question. I felt lucky because I know that my transplant saved my life and I felt excitement at the prospect of my future. But it was tinged with sadness too because I knew that someone had had to die to enable me to live. I've tried not to dwell on that too much though.

I've heard some stories on the Internet about transplant recipients finding it strange to have someone else's organs inside them, but I've never found that. The way I see it is that my 3 transplanted organs are inside my body and have my blood running through them, so they're mine now. So I don't find it uncomfortable or disturbing. I will never forget that they were once my donor's though. Now I've become more involved in the transplant community and have seen people's time run out while on the waiting list I am aware of just how lucky I am that I received my call in time.

I just want to add a bit more about my relationship with my donor family now. When I was in hospital recovering from my transplant I was visited by a transplant co-ordinator who sat down with me and my parents and asked if I wanted to know a little about my donor. I said yes. At that point all I think I was told was that my donor was female, she'd been 19 and I was also told what area of the country she was from. I can't remember if I was told at that point or later about the cause of her death. And I was told that I could write to my donor family if I wanted to, but I mustn't expect a reply back, as the family don't always reply. I knew that I wanted to make contact with my donor family, but decided to concentrate on getting better and out of hospital first and then I could write that letter when I'd recovered a bit more and it'd be more positive.

When I was about 3 months post transplant (so about the time I returned home) we received a phone call from the transplant co-ordinator saying that my donor family had written me a letter and I was asked if we would like to receive it (all correspondance has to go through the transplant co-ordinator to check suitability of letters etc). I said yes of course and waited for the letter. I waited and waited, but it didn't come. We assumed that it had been lost in the post and so contacted the transplant co-ordinator who said that they'd photocopied it before forwarding it on, so would send us the photocopy.

Then the photocopy and the actual letter arrived within a couple of days of each other. I was so glad to receive the actual letter because the photocopy had chopped some of the writing off and a photocopied photograph was no replacement for a real one. The letter was from my donor's eldest sister, J, and was lovely. It was written inside a card and my J wrote on behalf of her family and told me about her sister (and included a beautiful photograph of E) and sent her best wishes to me. J included her email address and so instead of replying with a letter though the transplant co-ordinator I emailed her directly.

Since then we've been in contact via email every so often when I've updated my donor family on my health and life (and sent them some photos of me) and also on significant occassions such as my transplant anniversary, Christmas and my birthday. J passes my messages onto her parents and says that it helps their loss to hear how well I'm doing.

Just over a week ago I received an email from my donor's other sister, C. She said that she's enjoyed reading my emails to J and just wanted to make contact to say hi. I replied to that and have since received another email from her.

I feel really priviledged to be in touch with my donor family as I know most transplant recipients don't get that chance. I'm very happy to update my donor family on my progress as I feel that's the least I can do. And being in contact with them makes me happy too :)

BTG and my health

My plan of avoiding rice to help my tummy aches hasn't worked. After stopping eating rice I had no tummy aches for 5 days, but then they came back again, just as bad as before. Very frustrating. But I've had a chat to my parents and we've thought of another plan that might help my tummy aches, so we're giving that a try and if it doesn't work I'm going to contact my consultant from Hospital A to ask his advice. Because a transplanted bowel doesn't have the nerve connections a normal bowel has, peristalsis (the contractions of the muscles of the digestive system to push food along) either doesn't occur at all or occurs less than normal (can't quite remember). So food moves through my digestive system much faster than it should, but I take some tablets called Loperamide to slow it down. I used to take lots of these, but had got it down to a very small dose. Now I've tried increasing my dose slightly to see if this slows my digestive system down and eases my stomach aches. Fingers crossed it helps.

Last Monday I had a lovely day when an old friend came round. I was at secondary school with K, but hadn't seen her properly for around 3 years. We lost touch for a while, but got communicating again through Facebook quite recently and so I invited her round. It was great to catch up with K and hear about what she's been up to since I last saw her. There is only one other friend I've kept in touch with from secondary school - F. I've seen F a couple of times over the last few years, most recently around Christmas time last year. She's coming round a week on Thursday and I can't wait to see her :)

On Thursday me and mum set off to the British Transplant Games as planned. We settled into our accommodation in the afternoon (at the University of Warwick) and found our tea before setting off on the bus to the Opening Ceremony in the centre of Coventry. The Opening Ceremony was good, if a little disorganised! It was great to meet up with some friends from the Transplant community (especially Cat who runs Transplant Kids and Sarah, mum to Wills), meet some new people and see my physios and dietician outside of Hospital B. I felt quite tired after that, so headed back to the accommodation rather than attending a transition meeting like I'd originally planned. The next day (Friday) I woke up exhausted, so withdrew from my 10 pin bowling event and spent the day resting. However that evening me and mum discovered Warick Arts Centre on the university campus and found out that they had a little cinema there. So we saw a fantastic film called 'The Class'. On Saturday I was exhausted again, so me and mum packed up and came home. I was disappointed that I couldn't participate in my event or stay til the end of the games and I'm very frustrated with my exhaustion getting in the way of everything. However my appointment with the M.E. clinic is fast approaching (August 11th), so hopefully I'll be able to get some help there. Have just heard from Cat at the games - Hospital B won the best liver team and the best children's team (for the 14th year in a row), so congratulations to everyone who was involved :D

When we got home yesterday I just spent the rest of the day relaxing. While I was away I recorded Mika at the iTunes festival and another gig featuring Little Boots and the Pet Shop Boys, so I enjoyed watching those yesterday. I also watched the final episode of Psychoville, which was good but left lots of unanswered questions, suggesting there will be a second series. And I saw Mika's new video (for We Are Golden) on the Internet. If you're interested in watching it then click here, click on 'Enter' and then when the intro video has finished click on the bit about a Mika exclusive at the top. Let me know what you think.

This morning I felt ok, so went out to browse round our local carboot sale with my parents. I bought 7 DVDs for just £8 - bargain! Then we picked my Nan up and brought her back to our house for the afternoon. It was lovely to see her, but I felt exhausted again :( So I spent some of the afternoon just relaxing in my room and some with the rest of my family. I showed my Nan my photos from last Saturday and we all watched a film called 'Little Miss Sunshine' together. I'd highly recommend it if you've not seen it, as it's a fantastic film!

Before my transplant, when I used to be on TPN, I was under Hospital G. I used to stay in there quite often, so made a couple of close friends over the years - C and I. However since my transplant I've almost lost touch with them apart from the occassional email to I. A few weeks ago my mum received a phone call from C's mum, who was quite worried because it looked like C might need a small bowel transplant. She knew we'd been through it, so had lots of questions for mum. C isn't dangerously ill as I was before my transplant, but her quality of life at the moment on TPN is poor and a transplant could give her a better quality of life. I emailed C saying she could speak to me anytime, but she's not been in touch since, so I don't know if she will be or not. Hopefully her mum will keep my mum updated though. Then when I arrived back home from the British Transplant Games yesterday, I found an email on Facebook from I. She asked if she could have her home phone number because a transplant had been mentioned to her and her mum wanted to speak to my parents. So last night I's mum spoke to my dad on the phone. Like C, I has been given the option of whether she'd like a transplant or not as it could improve her quality of life. I is going to phone me soon to chat to me about my experience. With me it was a matter of life or death, I had no choice in accepting a transplant as I knew without it I would die. It must be so much harder for C and I, being given the choice. For C and I, horses are their life, but post transplant pets are a big risk to your health, so that will just make the decision harder for them both. All I can do is tell them about my experience and help them to decide whether a transplant would be the best option for them or not.

One of the children I've met at hospital B is an inspirational little girl, K. She had a small bowel and liver transplant at 11 months old and is now 5. She's had a rough time since Christmas and has been in and out of hospital. However she has a fantastic sense of humour and is almost always cheerful and smiling. Last week I heard from her mum that K is going to need a second transplant. After I heard this news I contacted Live Life Then Give Life about their Robyn's Rainbows project. This project sends out balloons to members of the transplant community who are having a tough time. So I emailed them and asked them to send a balloon to K to cheer her up :) I know K is a fighter and she's been a real inspiration to me, so I hope she soon gets her transplant so she can begin to live her life again.

Throwing out school notes, my health, music, films and books

I've not done much over the last 10 days, but thought I'd write an update anyway because I've done a couple of interesting things. Sorry it's been a while since my last update, but I hope you liked the Japan posts :) I've got loads of photos on my laptop, so am going to try to do a few more memories/photos posts soon.

The day after my last update I sorted through all my sixth form stuff and class notes. I'm not very good at throwing stuff out and tend to be a bit of a hoarder, but was very happy that I got rid of loads and loads. All my work was in lever arch files which were stored in 2 crates on the dining room floor, so my parents are very happy to have the floor back! And the few bits I've kept (my Japanese notes and flashcards, my homework diaries, my yearbook, my reports and some bits for memories) now fit happily on the shelves in my bedroom :)

I've still been quite tired, so had to cancel my plans to run a stall to promote organ donation at my village Feast Day last Saturday. I've been quite fed up and frustrated with it all at some points this week, but I'm really hoping that I'll get some advice when I have my initial meeting with the local ME unit on August 5th. For the moment though I just want to do so much, but don't have the energy, which is very frustrating. I really want to try to learn to drive again, but I know I used to make mistakes and get very upset at myself when I was just a little bit tired, so I think that should probably wait til I feel better and less tired. And I also don't really have the money at the moment either, learning to drive is soooo expensive! I took my theory test when I was learning before, but that expires in November, so it looks like I'll have to take my theory test again. I'm not conerned about retaking it as I found it easy, but it's just more money! And I want to work too, but I just don't have enough energy at the moment. It's the British Transplant Games at the end of the month and it now looks quite unlikely that I'll be feeling up to competing. I'll definitely attend though as it's a big social event and I'm really looking forward to catching up with some friends there and hopefully meeting some new people too. However my weight has been staying stable, which is very positive and since my last hospital appointment I've been making a big effort to make my diet more balanced, so have been working hard to try new foods, especially fruits. I've discovered I love plums, but unfortunately so do the rest of my family, so other people keep eating the ones mum buys me when she goes shopping!

I think I've mentioned before that I really like Little Boots. Well, I've bought tickets to see her live in October, which I'm really excited about! She's doing a mini tour of the UK, but isn't doing any big cities, like London. However, she is coming to my nearest city, yay! The tickets were very reasonably priced, so I'm going with my friend Claire and my mum. I can't wait! :D I found lots of good Little Boots videos on Youtube too, which I've enjoyed watching. This week I was also really pleased that I was able to fix a problem with my iPod that had been annoying me for ages (lots of artists wouldn't show up in the artist listing). Quite frustratingly a key has fallen off my laptop keyboard this week and I'm struggling to work out how to fix it as I think the bit underneath might need gluing back into place. I'm going to ask my dad about it tonight and hopefully he'll know what to do. And my laptop screen seems to have acquired a scratch, but I've no idea why. Apart from that my laptop is doing quite well considering it's 4 years old :)

I've been relaxing quite a bit since my last update as I've been very tired. I like watching films and have watched a couple of good ones this week. The Curious Case of Benjamin Button was much better than I expected, but it was quite long. Another film I watched was called Panic Room and all the reviews I'd read before I saw it said it was very scary and tense. It was a good film, but I didn't think it was scary, and I think I found it funnier than it was intended to be! And then very excitingly I saw Harry Potter and the Half-Blood Prince on Wednesday with my family, Claire and Claire's friend. I've never seen the cinema (a big multiplex) as busy - every showing of Harry Potter on Wednesday was completely booked up, there were no parking spaces to be found, the foyer was packed... We'd prebooked our tickets in advance, but got to the cinema about an hour early to queue for good seats. The film was brilliant and I'd highly recommend it :D And I bumped into an old friend at the cinema too, which was nice.

I used to be a very avid reader, but have struggled to read recently while my concentration hasn't been very good. However, I've got back into reading this week which has been lovely :) So far I've just read a few Young Adult books from the library, but think I might read the Harry Potter books next. I've read books 1 to 4 before, but haven't read the last 3. So I want to reread the first 4 and then see if I can get through the final 3 :)

Cinema campaign, struggling in the heat, a weight gain, wasps, exam results and a hospital clinic

Sorry it's been so long since I last updated. I felt much worse in the heat and had some awful days last week. Luckily with the weather cooling a bit, my energy and tiredness seem to have improved too. And I seem to have been really busy since the weekend, so I've just not had chance to update. Sorry in advance for the length of this update, I'll try not to waffle on too much.

Last Monday (29th June) I returned to the cinema to speak to the named person about the organ donation leaflets. He was very rude. He had a copy of my letter in front of him, but didn't read it and started writing guest passes out. I explained what I was asking for and asked him if he'd read the letter, but he said they only did guest passes and couldn't support charities in any other ways as they had just one chosen charity they helped. So I left organ donation leaflets in the toilets and on windowsills ;) Me and mum saw a film called 'The Hangover' which was very funny and I'd highly recommend it. I didn't feel too well in the cinema though. When we came out we checked in the toilets to make sure that the cleaners hadn't removed all the leaflets and were happy to find that 3 had been taken :)

That day I pre-ordered a new Wii game called Wii Sports Resort online, so I'm looking forward to getting a copy when it's released towards the end of the month. Me and mum made the most of Monday evening, playing card games together, as we knew the boys would be returning from Glastonbury that night. They got back just before 11pm, very happy. Dad bought mum some wool, which she was delighted with, and bought me a lovely hand-dyed shirt. We all had a very late night as the boys were full of their adventures and both had to shower before going to bed as they'd not showered since they left!

Last Tuesday (30th June) I was delighted to find that my weight was up nearly 2kg from the previous week. The high calorie drinks I've been taking 2 of each day have clearly worked, despite tasting disgusting! My dietician was very happy with my weight gain too :) I felt quite rubbish with hayfever for most of Tuesday. I usually suffer mildly with it, but last Tuesday I couldn't stop sneezing and my throat swelled up a bit too, probably because it was a really hot day. I didn't have much appetite either, but managed to drink plenty. I found the perfect way to cool down in the heat was by watching a film called 'The Day After Tomorrow' which is all about an ice age!

A few days before my friend had given me back Wii Fit which she'd borrowed for a while, so I played on that for over an hour. I'm not sure that was a very sensible idea in the heat though! And that evening I enjoyed a lovely walk round the village with my parents, which is something we don't do very often. We just wandered and it was nice to be out as it was much coooler by that time. I didn't think to take my camera though, which I regretted when we walked round the village pont and saw some adorable ducklings. When we got back I went on my Wii a bit more, but played a puzzle game as I thought I'd done enough on Wii Fit for the day. The hot days and mild nights brought all the bugs in and that day I let 2 damselflies out the window. They don't bother me, but I have a real phobia of craneflies - yuk! And they kept coming inside too :(

Last Wednesday (1st July) I really regretted my extended session on Wii Fit the previous day as my legs really really ached. Paracetamol didn't help at all, but codeine eased it a little bit. I was happy to receive my Focus Magazine in the post and a DVD. I really like the actress Sandra Bullock and have been watching lots of her DVDs recently. So I couldn't believe it when I found a DVD called '28 Days' on Amazon Marketplace for £1.40 including P&P. I went for a walk round the village with my mum with the aim of calling in at the library for her to do a bit of cleaning (mum works as a library assistant in the village library and is also the cleaner). It was really really hot and just as we approached the library mum realised she'd left the library keys at home. So we walked back home and then returned to the library in the car as we were both exhausted from the heat. When we got back home me and mum were really tired, so both had a nod.

I didn't feel refreshed after my nod, so just relaxed for the rest of the day. I played on my Wii for a little while before tea. Then after tea me and mum showed dad Lady GaGa's Glastonbury set that we'd recorded. Neither of us like Lady GaGa's music (apart from one song), but thought dad ought to see her outfits. I've found a clip on Youtube of her most daring outfit, which you can see here. The video isn't great, but will give you an idea of what she was wearing. It certainly made my family laugh! After that I watched a film called 'Mr and Mrs Smith' before bed. It wasn't the best film I've seen, but was better than I expected and quite funny in places.

Last Thursday (2nd July) my legs were still very achy from playing on Wii Fit on Tuesday. I got some more exciting post - a DVD of a Pink concert I'd bought online :) I really like Pink, so was disappointed to find that my tour t-shirt had been ruined in the wash :( Part of the design had come off, despite the t-shirt saying you could machine wash it, grr. And 2 DVDs I'd ordered from my local library (Premonition and Gran Torino) had come in. So that morning me and mum started watching Premonition, as we both like Sandra Bullock, so had high expectations of it. However not long into the film I felt really ill - I felt really hot, had a bad headache and felt sick. I took some antisickness tablets and then fell asleep on the sofa. I slept solidly for 2 hours! I don't think the heat agrees with me.

I had a lazy afternoon and started the first novel I'd read for ages. It was called 'What Was Lost' and I'd highly recommend it. I also watched Lily Allen's latest music video on the Internet. I can't believe her choice of the next song to release though - why 'F*** You'? The radio stations and music channels aren't going to be allowed to play it! I did find a hilarious clean version on YouTube though. I relaxed in the evening too, so finished the film. Recommendation - don't watch Premonition, it has a really bad ending. After I finished watching the film I watched some TV, including the brilliant Psychoville. After that I felt awful again, a bit like I had that morning, but my headache was a lot worse. After lying on the sofa in the dark for a bit it eased, so I read and then went to bed.

On Friday (3rd July) I recieved the reciept for my payment for the accommodation for the British Transplant Games in the post. I forwarded it on to the team manager for hospital B and should be able to get the money refunded as the hospital have received a grant to be shared between the families participating in the games this year. I still don't know whether I'll be a participant or a supported at the British Transplant Games this summer as it'll depend on my health, but I'm really looking forward to going for the social side of it :) I felt completely exhausted so went back to bed from midday til 2pm. It didn't help though. I relaxed that afternoon, reading and watching the music channels, and then tried to have a nod at about 4.30pm. I couldn't sleep though. My friend Claire came round for tea, so she took my mind of my lack of energy for a while. We chatted, watched music videos on the Internet and watched Jonathan Ross together. I can't stand Jonathan Ross, but put up with him on Friday because I liked his guests - Sandra Bullock, Emma Watson and Little Boots :) And that evening me and my family prebooked to see the new Harry Potter film on release day. Although I'm a keen reader I never got further than the 4th Harry Potter book, so thought it'd be great to see the film on release day because then there'd be less of a chance of someone giving the plot away for me. However that didn't work. Reader's Digest interviewed the actor who plays Draco Malfoy and in the article summarised the whole plot - they must assume everyone has read the books! And then H (the girl I babysit for) told me all the details of Dumbledore's death! Oh well.

Friday evening our wasp saga began. Dad spotted that wasps were making a nest in the outside wall of the house, where a plug from the insulation must have fallen out of the wall. So he blocked the hole up, which made the wasps very angry, but they soon calmed down. We thought that was the problem sorted - we were very wrong!

I woke early on Saturday (4th July) morning because there were some workmen next door making lots of noise. The bathroom window and door had been shut all night, but mum went in there in the morning and discovered hundreds of wasps flying around! Dad thought he knew how they were getting in, so blocked up some holes in the bathroom. It didn't work though and they continued to come in. Dad then realised that there was another hole in the outside wall which was allowing the wasps to get into the gap between the inner and the outer wall and from there they were the flying through different pipes and coming out in the bathroom! So he bought some chemical stuff to kill them and sprayed it everywhere. It worked and they all dropped down dead. Then Alf got home and started to call dad a murderer! Since then we've been finding lots of dying wasps everywhere, but the numbers seem to be decreasing now. On one of the early days dad threw one dead wasp in the toilet and flushed it. I then noticed there were more than 10 wasps in the toilet bowl. They'd all sheltered from the spray under the rim and then been swep into the bowl with the flush. On one occassion I picked lots of dead (or so I thought) wasps up from the floor and tried to flush them down the toilet. They didn't flush and then I realised they weren't actually dead. So mum fished them all out, but they died anyway from the chemicals. I wear glasses and can't see a thing without them. So when I'm in the shower or washing my hair I'm quite vulnerable because I can't see anything. So I've been clearing all the dead wasps away before I shower (but now I throw them out the window instead of flushing them in case they're not dead). But one day I'd just finished washing my hair and was wrapping the towel round my head when I heard a buzzing. I couldn't see where the wasp was so ran out the bathroom and shut the door behind me. But I'd left my glasses behind. I wasn't going to go back in and feel around for them as I was sure I'd end up putting my hand on the wasp, so had to call mum to rescue my glasses for me! I'm not the only one in my family though who has been bothered with the wasps - one night my dad rolled over onto a dying wasp in bed and got stung on his arm!

I was really tired on Saturday so went back to bed from 11am til midday and then again from 1.30pm til 4pm. I felt a bit better after that, so had a go on Wii Fit, but didn't overdo it! I also started a new novel (called Sharp Objects), which I really enjoyed. That evening with my family I watched a film called Gran Torino. It was really well made, but very depressing. I really struggled to get off to sleep that night, maybe because I'd slept so much during the day.

I wasn't too tired on Sunday (5th July), which was nice after having felt exhausted for most of the week. I sat for H in the morning, which was enjoyable. She's lovely and we just play games together. I took round a bag of bits for her that I'd found during my big room clearout that I thought she might like, so she really enjoyed playing with some new stuff. I also took round her birthday present as she'll be 11 later this week. I can't believe she'll be starting secondary school in September, she wont be needing me any more soon! That afternoon I felt well enough to go to a friend's BBQ with my family. I ate loads of yummy BBQ food and enjoyed socialising. Sunday marked the start of National Transplant Week, so I also gave out some organ donation leaflets there too :) I woke up in the night with cramp in my leg.

On Monday (6th July) morning I spoke to a liver nurse from hospital B about my concerns about the transition to hospital A. She told me she'd spoken to a transplant co-ordinator from hospital A and she'd hopefully be in touch with me later in the day before my clinic on Tuesday at hospital A. Later that day the transplant co-ordinator from hospital A rang me and she seemed really nice. She gave me her contact phone number and said she'd meet me at hospital A the next day. On Monday morning I also relaxed and watched a really good film called Rachel Getting Married with my mum. I'd recommend it.

At 2.15pm on Monday afternoon I was able to access my exam results online using a special PIN that school had given me. I was really happy with my results as I'd done better than I'd expected given my health over the last year. I didn't take the full International Baccalaureate Diploma, but instead took International Baccalaureate Certificates in 5 subjects. Each subject is graded from 1 (which is the lowest) to 7 (which is the highest). I got 5s in English literature, psychology and biology. And I got 6s in environmental systems and Japanese :D After receiving my results I was in touch with lots of friends via Facebook and text. Some of my friends had got results as good as or better than they expected, meaning they had places guaranteed at their first choice universities. But quite a few of my friends got lower results than they were predicted, so have to contact the universities they applied to to see if they'll still accept them. And a couple of friends failed the diploma, so will have to retake the exams.

After receiving my results and speaking to friends me and mum headed out into town in the pouring rain. I went to the optician because I'm still having problems with one of the arms of my glasses working loose, even though they replaced the screw last time I was at the opticians. This time they tried one last plan to fix the arm (applying some sticky stuff to stop the screw from moving) and if this doesn't work then they'll replace my frames. I wanted to treat myself after getting my results, so preordered a DS game (Professor Layton and the Diabolical Box) from GAME, bought another Sandra Bullock DVD (Practical Magic) and bought myself a CD I've been looking to buy for a while (Hands by Little Boots). I think Little Boots is great - her album is really catchy and I was very impressed to find that she's written or co-written every song on it. The only single she's released so far is New In Town, which you can see the video for here. Her next single is going to be Remedy, which you can see her performing on Friday Night with Jonathan Ross here. And possibly my favourite single from her album is Earthquake, which you can listen to here. Then me and mum met up with my friend Claire at the garden centre for a drink. Monday evening I just relaxed - surfed the Internet, watched TV, listened to my new CD on my iPod... I had a late night.

I had an early start on today (Tuesday 7th July) as I had to get up at 7am to get a lift with my dad on his way into work. Dad dropped me off at my old school, so I could catch up with some friends who I'd not seen since we finished school at the end of May and say final goodbyes and thank yous to my teachers. Me and Catherine were really cheerful because we'd got the results we wanted, but there were lots of students from our year waiting to speak to the deputy head of year because they hadn't got the results they needed to get into university :( One friend had been planning to meet us at school, but I recieved a text from her saying she'd had too much to drink the night before, so couldn't make it in! So we popped round to her house instead (she lives close to the school). I also gave out some organ donation leaflets while I was at school. The buses are meant to run every 10mins, but we ended up waiting for 35mins for a bus in the pouring rain! And then the bus took 40mins to travel just 5 miles across the city! Anyway, I eventually arrived at hospital A.

At hospital A I helped out on the organ donation stall they had in the foyer for National Transplant Week. I enjoyed speaking to people and trying to persuade them to join the organ donor register. It was also good to meet other transplant recipients, though they'd just had liver transplants. A girl who looked a couple of years younger than me and her mum came past our stall and stoppped to chat. The girl had just been told in clinic that she needed a kidney transplant so her and her mum were a bit in shock. Me and a liver transplant recipient spoke to her and her mum about the differences transplants had made to our lives and all about how good life after transplant could be, which seemed to reassure them both. And we persuaded her mum to sign the family up to the organ donor register, as it was something she'd not even thought about!

My clinic went really well and my consultant (Dr W) reassured me about some concerns I had. The main points discussed were:
~ My transition can be delayed, as it's totally up to me when I leave hospital B.
~ My unbalanced diet probably isn't helping my tiredness.
~ My consultant thought he knew why I've been struggling with stomach aches, so have got a prescription for some tablets that should help that.
~ My headaches are because I've not been drinking enough, so rather than aiming to drink 1 litre a day I now have to aim for 1.5 litres a day.
~ My tablets need to stay as they are, apart from lowering the dose of one.
~ I've had some disomfort in my side for about 6 weeks, so asked about that. It's an incisional hernia, which means my stomach muscles have weakened due to all my surgery. It's nothing to worry about if it doesn't hurt, which is a reassurance as I had no idea what it was. But if it does begin to cause problems I can have an operation to fix it.
~ My annual tests to check for rejection might be done at hospital A for the first time this year rather than hospital B, but my 2 consultants will liaise about that and let me know.
~ My next appointment will be in 3 months, rather than 6, because there are some small concerns at the moment and I live locally, so that's fine.

After the clinic I met the transplant co-ordinator, the clinical nurse and the dietician from hospital A. They all seemed lovely and I've got their contact details now. I spoke to the dietician about trying to make my diet more balanced and I've got some good ideas now. I had bloods done by the clinical nurse. She reassured me that she was brilliant at taking bloods, but the vein collapsed when she had the needle in, so she had to try again. She then blamed it on my veins and said they must be delicate, when I know they aren't, as I never usually have problems! I got a tour round the 2 wards (if I'm in for biopsies, bloods or anything else routine I'll be on the gastro ward, but if I'm in with any tx related problems, such as suspected rejection or infection then I'll be on the transplant ward). And I met two small bowel transplant recipients from the transplant programme at Addenbrookes, which was great. They were the first adults I'd ever met who have had small bowel transplants! It was lovely to speak to them and they both looked really well, despite not being long post transplant (15 months and 6 months). And the two of them were a couple - they'd met in hospital :) Hospital A haven't done many small bowel transplants, so the few recipients they have are very close and keep in regular contact.

On the way home I heard from a liver nurse at hospital B. When I was there last month (at the family day) one of the nurses asked me if I'd ever seen a photo of my old organs, as apparently they have all been photographed. I said no, but I'd be interested to see one. So they've found a photo of my very diseased liver, which they'll pop in the post to me. But they thought they'd warn me that it's on its way as apparently it's pretty horrible!

I left the house at 8am and got back home at 5pm, which is a very long day for me. I've felt quite tired this evening, so have just been relaxing - surfing the Internet, watching some TV, listening to music and typing this update up. I'm off to bed now.

Overdue update

Sorry for the delay in updating. I seem to have been very busy this week, but haven't really done much worth writing about! So I'll try to write an update, which may be surprisingly short or more likely it'll be ridiculously long as I remember various things as I go along!

On Tuesday morning I weighed myself like I do every week and was disappointed to find that I'd lost a bit of weight for the second week in a row :( So I've been in touch with my dietician who is also quite concerned and since Tuesday I've been having 2 high calorie drinks each day in the hope that they will help my weight. The flavours of the drinks are ok, but I struggle a bit with the textures as they are so thick.

My dad and Alf set off to Glastonbury at 3.30am on Wednesday morning! Me and mum haven't had many updates as they're finding it tricky to get a phone signal, but the updates we have had were very positive and they sounded happy! I've been enjoying watching some of the Glastonbury coverage on TV this evening, especially Lily Allen with her purple hair. Was quite shocked at her revealing outfit though! :0 I also liked V V Brown and Little Boots :)

With regards to the sorting out of my room, my desk chair arrived on Monday. I was very surprised to find that it was a flat pack, but managed to put it together on my own, which I was very proud of! However, it is quite uncomfortable to sit on :( I bought it to replace a desk chair that I've been borrowing from Alf's friend, so am going to ask him if he'd like the new one and if I can keep the old one, as I find it more comfortable :D

And I bought myself a new TV for my bedroom! I had an old 14 inch non-flatscreen TV, so decided to replace it with a 19 inch LCH flatscreen TV with built-in Freeview and a built-in DVD player :D It was delivered just 2 days after I ordered it (the delivery estimate was 3 to 5 days) and I managed to set it up myself, as Dad is at Glastonbury! It was quite expensive, but I'm very happy with it :D

I've been feeling quite tired this week, which has been disappointing after I had such a fantastic fortnight. But I've still been getting on with things and have helped mum tidy up the house a bit while the boys are away. I've also watched a few films this week - The Ring, The Corpse Bride and 2 Weeks Notice :) And I've discovered a great programme on the BBC called Psychoville, which I'd highly recommend as it's not like anything else on TV. And I've got Wii Fit back from a friend this week, so have been playing on that a bit. It's made it very clear that my balance is rubbish, so I'm going to see if I can improve that as well as my fitness in general.

My friend Catherine didn't make it round on Tuesday as she had been ill the previous night and suspected she had a stomach bug, so had to stay away, as I couldn't risk catching it. But I'm hoping to go to a friend's 18th party tomorrow if I feel up to it, so will see Catherine there.

I heard on the local news this week that my old school (where I went to sixth form) is currently closed due to 2 cases of swine flu!

'My Sister's Keeper' is a fantastic book by Jodi Picoult which deals with some issues surrounding organ and blood donation. It has recently been made into a film which was released in cinemas today. A charity I support called Live Life Then Give Life are asking people to contact their local cinemas to ask them to display organ donation leaflets in their foyers to coincide with the showing of the film as this could be an effective way to raise awareness of organ donation. I've contacted my 3 local cinemas, but haven't heard back from them. I'm going to see the film on Sunday though, so will try to speak to someone at the cinema about it then. If you think you could contact your local cinemas you can find out more here.

The end of school (and May Ball photos)!

Last Monday I had bad stomach ache all day. I do get stomach ache sometimes, but on Monday it was worse than it usually is and lasted for a lot longer too (til Tuesday morning). I've no idea why though. I managed to get to Hospital H for bloods on Monday though, which all went very smoothly :) I rang the liver unit at Hospital B on Thursday to chase up the blood results, as Hospital H always fax them through. The results all came back fine. Which I suppose is good, but I was a bit disappointed as I'd really hoped that they might show a reason for my extreme tiredness. So that's a bit frustrating.

My weight has remained stable, which is good :) I've tried one more high calorie drink since my last update, but I really didn't like it. It was supposed to be apple juice, which I usually like, but it was really strong and tasted odd, lol. I hope I can find at least one high calorie drink I like!

Earlier this week my mum had an appointment with our GP so she asked him about the progress of my referral to the M.E. unit. He's submitted it and is just waiting to hear, so hopefully I'll soon get an appointment, fingers crossed.

On Tuesday I didn't have any exams, but went into school anyway to sort lots of odd things out, so I wouldn't have to rush around on Friday after my last exams. So I returned all my textbooks, got my book deposit back, asked all my teachers to sign my yearbook, said a final goodbye to some friends whose exams finished on Tuesday... And then I started my psychology revision. That evening I babysat for H for a couple of hours. We had a lovely time and I got lots of exercise playing on Wii Sports with her. I really regretted it the next day though when all the muscles in my right arm ached! H's dad works with computers, so I asked him if he'd be able to have a look at my laptop for me. He's just set up a computer repair shop in my local town, so said he'd be happy to have a look at it for me if I took it into there. So I spent this morning backing up all the stuff on my laptop in preparation for taking it into the shop sometime next week.

On Wednesday I felt awful, just really really exhausted. I attempted revision as I'd got so much to revise for my exams on Thursday afternoon and Friday morning, but I struggled with it. That evening after revising for most of the day, I relaxed and watched The Apprentice. I'm so glad Ben went, I couldn't stand him!

Thursday morning I did some last minute cramming before my first psychology exam that afternoon. It wasn't as bad as I expected, so that was relief. There was one horrible question though, that I was sure we hadn't covered in class. I didn't want to leave it blank though, so I made an answer up ;) All of my friends struggled with that question too, so it wasn't just me. We spoke to the teacher the following day about it and she felt ever so bad that she'd not gone into that topic area specifically with us, but had just mentioned it in passing. However, apparently it had never come up in past exams. Next year she's going to add something specific on that area into the syllabus! Thursday evening I attempted to revise everything for my other 2 psychology papers the next morning, so that was quite stressful. Friday's exams went fine, I think!

I couldn't quite believe it that all my exams were over when I walked out of the exam room on Friday and unless I choose to go to uni in the future, I'll never have to revise or sit another exam again! I'm glad the stress and pressure is off now and I'm hoping that with some relaxing I might start to feel a bit better. I'm quite nervous about my future though, as I really don't know what it holds. I'd imagined that when I'd finished school I'd be looking for an apprenticeship or a job, but I'm just not well enough at the moment. So my plan is just to have a break over the summer and then see how I feel after that.

Friday afternoon was sad saying goodbye to everyone, but Facebook is an amazing invention that we'll be able to use to keep in touch. I gave cakes out to my favourite teachers to say thanks for all their help and support over the last 2 years. The last 2 years have been the best years of my life, despite my health problems, because of the amazing sixth form I've attended and the fantastic people I've met there. There are so many people I'm really going to miss.

This afternoon I've finally worked out how to post photos on Facebook, so I've put the May Ball photos and some photos from the final few days at school up on there. Rather than posting them all up again on here, I'll just post the links you can use to view the albums. They should work even if you don't have a Facebook account. So click here to see my May Ball photos (fingers crossed that this works!). The girl in the blue dress is Catherine (my best friend from school and someone who went to Japan with me) and the girl on the right of photo 8 is Abi (another very good friend who also went to Japan). And in photo 15 the teacher on the left of me is my lovely psychology teacher and the teacher on the right of me is Mrs K. And click here to see 2 photos from my final days of school. The first photo is of me and Abi with our Japanese teacher and the second photo is of me with Mrs K (on the left) and Mrs M (on the right).

Yesterday evening I had a lovely time just relaxing and being happy that all my exams were over when my friend Claire came round. I showed Claire and my dad Holly's Battlefront programme and they were both very impressed with all of Holly's work and surprised that me and mum had been on TV :)

This afternoon I was planning to attend a friend's BBQ to celebrate her birthday and the end of our exams, but I've been exhausted today, so didn't feel well enough to go :( So I've been mainly relaxing today, but have been a bit productive too with backing up my laptop, putting my May Ball photos on Facebook...

A busy week

Sorry for not updating my blog for a week, I just seem to have been busy. When I originally updated weekly it resulted in some very long posts, so I'm sorry in advance if this post ends up ridiculously long ;)

Last Tuesday I went into school for the day as my Japanese teacher said she'd be around all day to help us with revision. I thought the majority of my class would take advantage of this, but barely anyone turned up. I was on my own with the teacher for most of the morning, but that was good as I got some really productive revision done. And then a friend joined me for the afternoon and we continued to revise while eating loads of lovely Japanese sweets that our teacher kindly provided to give us energy! I'm not very good at motivating myself to revise at home, but that day I did about 7 hours of Japanese revision! And we finished the day by experimenting with the self-timer on my camera to get a photo of the 3 of us, as I thought that might be the last time I saw our Japanese teacher. And she wrote me a lovely message in my yearbook, but it was in complex Japanese, so I can't actually read it, lol. But my teacher explained what it said to me :)

On Thursday I had my 2 Japanese exams. There was an hour and a half reading paper followed by an hour and a half writing paper. We were in the coldest room in the whole school, so the majority of us sat the exams in our coats - in May! The reading paper consisted of 4 sections, the first 3 of which were fine. However, section 4 was very difficult and it had a little writing exercise tagged on the end of it. I spoke to my friends after the exam and none of us had been able to work out what we were meant to write about, lol. But I had a go. And the writing paper was good :) That was split into 2 sections. For section A we had a choice of 2 shorter writings, both of which were a bit odd. But I had a go at one - writing a letter to make a hotel reservation. And for section B we had a choice of 3 longer writings and I really liked one of them. So I chose that one and wrote about a holiday to Japan, which is the kind of thing we'd practised a lot in class. And I managed to get loads of different grammar structures in.

The only exams I have remaining now are 3 psychology exams. One is on Thursday afternoon and then the final two are on Friday morning. I've not actually done any psychology revision yet, so am planning to make a start on that today. I'm a bit concerned though as I know I need to get lots of revision done before the first exam on Thursday afternoon, and how much I can do will depend on how I feel. Tomorrow I'm planning to go into school even though I don't have any exams. I need to return all my textbooks to the relevant teachers and get my leaver's form signed off before I leave for good on Friday. One of my closest friends also finishes her exams on Tuesday, so I want to say a proper goodbye to her and maybe take some photos. And I'm going to try to get more friends and teachers to write messages in my yearbook. Hopefully I'll also be able to fit in some revision tomorrow around all that, as I revise much better at school than at home. At home there are too many distractions!

Last Thursday Holly's Battlefront programme was on TV. If you missed the programme you should be able to view it here soon and also on 4 on demand shortly. I thought the programme was brilliant and Holly came across really well on camera. She's such an inspiration with her campaigning :) I was also on TV briefly in the photoshoot and in the crowd scenes at the drinks evening. There was a very unflattering close-up shot of me and my mum at one point though, lol.

On Friday I attended my sixth form's May Ball. I was quite nervous beforehand as I've not really been to anything like that before, but I had a fantastic time :D There was a lovely buffet, a great band playing and it was a really good social event. I forgot my camera, but my friend Catherine took loads of photos for me, so I should be able to put them up later in the week, once I get them from her on Thursday. And there were a couple of professional photographers around, so I need to find out how I can get hold of those photos. My friend Claire helped me get ready, as I'm a complete novice with make-up and dressing up, but she was great. That was the first time I'd ever worn high heels, so that was a very odd experience, but I managed! There were some fruit drinks available as we went into the May Ball, but because I have to avoid grapefruit (it reacts with my anti rejection medication and stops it from working) I gave it a miss after the people serving it couldn't reassure me it was grapefruit free. Then one of my friends who had taken a glass said it definitely had grapefruit in it, so I was glad I avoided that! I'm not a dancer, as I have absolutely no sense of rhythm and so as the dancing started I opted to just sit and watch. Later in the evening I felt like maybe I should give dancing a go, but I was just too tired, which was quite frustrating. But all in all I had a really good time and it was a fitting end to my time at sixth form. Although I still have some exams to go, lots of people finished their exams last week, so on Friday I had to say goodbye to some friends. We will keep in touch though and try to meet up every so often.

I've been exhausted since the May Ball though, which I suspect is just because I had such a busy night. I spent a lot of the weekend just relaxing as I felt so tired, and had a great time watching Eurovision with my family on Saturday night - it was a real laugh! I'm hoping I'll feel a bit better today though, as I really need to start my psychology revision. At some point today I'm going to go to my local hospital (hospital H) to have blood taken. Hospital B ask me to have bloods done 3 monthly now, so the next ones weren't due til the middle of June. However, because my tiredness seems to have been worse recently I rang the liver team at hospital B and asked if my bloods could be brought forward because I wanted to be sure there wasn't any medical explanation for my tiredness increasing. The results will be faxed from hospital H to hospital B and then hospital B will contact us about the results. And I will also have my B12 levels checked, as the M.E. referral unit asked for that.

My dietician has been concerned about my appetite as when I'm tired, my appetite decreases, so I eat less, so I get less calories, so I become more tired... And so it continues. But my weight is remaining stable. So I had a shock last Tuesday when she suggested that she thought me going back onto overnight enteral feeds might help my tiredness. To me going back onto enteral feeds is like a last resort, as I love the freedom being off of them allows me. So I spoke to my dietician and asked her if I could try some other things first, and she agreed! So we'll review it in a few weeks. The plan is that I'm making a conscious effort to eat more, I'll try some high calorie drinks, I'm going to have my bloods done to rule anything else out and I'll see if my tiredness improves once all my exam stresses are out the way, which I suspect it might. So my dietician sent me a huge box containing a variety of different high calorie drinks on Saturday. I've only tried 2 drinks so far, the first was disgusting and made me feel very sick for a few hours and the second was ok, but I didn't really like it. I'm hoping in amongst all the drinks I'll be able to find one or two I like, as my dietician said ideally she'd like me to drink two a day.

On Friday I visited the orthodontist as I'd arranged an appointment because one of the wires on my braces had come loose, so I was worried it wasn't doing its job properly. At the appointment my orthodontist told me that my braces weren't broken, in fact the wire had just loosened because my teeth were moving like they were supposed to! I wish he'd warned me in advance as I just felt so stupid and that was time and petrol wasted driving 20miles to and from the hospital just to be told there were no problems. I've got to return in about 2 and a half weeks to have my braces tightened.

In this post, I mentioned that a few children in the transplant community were having a tough time. Luckily there's now some more positive news :) K is out of hospital and the little girl I spoke of who'd had complications with a liver transplant has now received another liver and is doing well so far.

Quick update

Just a quick update to let you know that I did survive today's Japanese exams and I actually think they went quite well :)

I hope to post a full update tomorrow as I have more to tell you about exams, Holly's Battlefront programme being on TV (and me being on it!), a recent discussion with my dietician...

But very excitingly, tomorrow night is my sixth form's May Ball (and I have an orthodontist appointment tomorrow afternoon), so my full update might be delayed til the weekend. If so, I will post up some May Ball outfit photos! :)

A bad weekend and another exam

I didn't have any exams on Friday, so planned to spend the day relaxing. But I woke up feeling good, so decided to pop into town for a change of scene. However, after visiting just a couple of shops in town I felt exhausted, so soon came back home. I felt exhausted that afternoon, all of Saturday and all of Sunday. All weekend I was too tired to do anything, very cold (I'm often cold, but this weekend I just couldn't warm up at all) and my parents noticed how pale I looked. I took my temperature a couple of times, but it was fine. My parents were concerned, but I think this is just the fatigue I've been suffering with since last July, but more severe. I don't know why it's more severe though, possibly partly due to exams? I also had headaches over the weekend, but I think that might just be connected with exhaustion. I'm also concerned about getting enough calories, as when I'm very tired my appetite goes, so I eat less, so I get less calories, so I feel more tired... And it continues. My regular blood tests aren't due for another month, but we're trying to get in touch with hospital B to ask them to send the letter out sooner, so we can just check that there isn't anything else causing me to feel so exhausted. My mum tried to get hold of someone from the liver team at the hospital today, but with no luck, so we'll try again tomorrow.

This morning I managed to make it in to school for an exam, despite such a bad weekend and trouble sleeping last night. It was my second (and final) English Literature exam and lasted for 2 hours. I think it went ok, as I had a good go at it, but it's difficult to tell. At least it wasn't a disaster.

I'm back at home now and feeling ok, so am planning just to relax this afternoon before my friend Claire comes round this evening. It's my sixth form's May Ball on Friday, which I'd really like to go to if I feel well enough, so Claire is coming round later to help me plan my outfit. I haven't worn a dress for many many years, but have borrowed one for the Ball, so it's all very exciting. I promise I'll post some photos up here after the event. I missed my year 11 prom (due to still being in isolation post transplant) and chose not to attend my sixth form's May Ball last year (due to not feeling very sociable and not really enjoying dressing up), but have decided to go this year as it's my year that are leaving (and my friends have all been persuading me to go!).

Tomorrow if I feel up to it I'm planning to go into school for the day to revise Japanese with my friends and the teacher will be around to help us out. I've got nothing planned on Wednesday, then I have both of my Japanese exams on Thursday morning. Friday afternoon I have an orthodontist appointment to fix my broken braces and then Friday evening is the May Ball.

Over the last week or so there's been some sad news in the transplant community. On May 1st a brave little boy who was 17 months old died just one month after receiving a liver and small bowel transplant. His family set up a website to raise awareness of organ donation, which you can visit here. Rest in peace Ethan xxx Yesterday a little girl of just 9 months old with liver disease was called for her transplant. It went ahead, but there were complications and she now desparately needs another liver transplant. And K (who I've mentioned before) who had a small bowel and liver transplant a few years ago, is back in hospital again.

But on a more positive note, William, who received a small bowel transplant last November, has just passed an amazing milestone. Have a look at his mum's blog here. Well done Wills!

No more science exams!

I had a relaxing evening yesterday after a busy day and really enjoyed watching The Apprentice. I'm so glad Philip went at last. I probably should have been revising though. I had a better night's sleep last night too :)

This morning I sat my final biology paper :D It lasted 1hr 15mins. It was quite difficult, but I expected that and I managed to attempt every question. After that I was expecting to have to go into solitary confinement again as the head of sixth form had told me yesterday that I wouldn't be sitting the final environmental systems paper til the afternoon, so would have to be kept away from other pupils as they'd sat it while I'd sat my biology exam. But I was shown to another room straight after the biology exam to sit my environmental systems exam! I was a surprised, but was happy to sit the exam then as I felt quite confident about it. And it'd get it out the way so I could go home sooner. It lasted for 1hr. There were a couple of tricky questions, but overall it was a good paper.

So now I've sat 7 exams and have 6 to go, so I'm more than half way through. And I've done all my science exams :D Now I've got a break til my second English Literature exam on Monday, so I plan to spend tomorrow mostly relaxing, but doing some revision too.

A very busy day

Yesterday morning I felt great, but it didn't last for long and I soon felt exhausted again. I managed to do a little bit of revision last night for my environmental systems exams this morning. I had a bad night last night though, as I couldn't get off to sleep for a couple of hours. I think it was becuase I was nervous about today's exams. I fell asleep eventually, but didn't have as much sleep last night as I would have liked.

This morning I had 2 environmental systems exams. The first one lasted 45mins and consisted of 30 multiple choice questions. The second exam lasted for 1hr and 15mins and consisted of short answer questions and an essay question (for which I had a choice of 3). Both exams went well as I find environmental systems an easy subject because it seems that most of it is just common sense!

I take environmental systems and biology, which apparently is an unusual subject combination, as there is some overlap between the two syllabuses. So the International Baccalaureate Organisation scheduled the exams at the same time, which meant my exam timetable said I was to sit 5hrs and 15mins of exams this afternoon. I realised this a few weeks ago though, so the deputy head of sixth form rescheduled 2 exams (the environmental systems ones) to this morning. However, this meant that I sat those papers before the rest of my class, so I had to be kept in solitary confinement over lunch, so I couldn't tell anyone else what was in the exams. Between my morning and afternoon exams I had just less than 2hrs which I had to spend in a room just outside the exams office on my own. I ate my lunch and skim read my entire biology revision guide in the hope that something would sink in before my afternoon biology exams. Biology was the subject I'd not managed to do any revision for in the weeks before the exams, but I wasn't too worried as I know I can resit in November if neccessary.

Eventually I was released from solitary confinement to attend the biology exams. There were 2 exams again. The first one was 1hr long and consisted of 40 multiple choice questions. I don't find multiple choice exams too hard as you can usually make an educated guess, but this one was difficult. Even my friends who'd done much more revision than me found it hard. I guessed quite a few answers, as I had no idea, so finished a bit early, but spent my spare time graffiti-ing my rubber ;) The second paper lasted 2hrs 15mins and consisted of some data handling and short answer questions and 2 essay questions (out of a choice of 4). The data handling questions were fine and the short answer questions weren't too bad, but the essay questions were a bit of a disaster! All 4 possibly essay questions were split into 3 parts, so I worked out which I might be able to do better at and attempted them. Some things I knew, some things I made an educated guess at and some I made up, lol!

So my first 2 biology exams weren't great, but I wont really know how I did until I get the results. But I can always resit in November if I want/need to. I'm just relieved they're over now :)

Tomorrow I have my final biology paper and my final environmental systems paper. They were both scheduled for the morning, but I was ok with that as they only total 2hrs 15mins. But the environmental systems exam has been rescheduled to the afternoon for me (which I didn't ask for!) so I'll have to spend lunch tomorrow in solitary confinement again, but it'll be for longer than today, around 2hrs 30mins. Never mind, I'll take some revision, a book and my DSi ;)

Lots of positives

After my last post I had a few more bad days, where I continued to feel exhausted and very fed up. However, on Sunday evening I felt a bit better and I had a good day yesterday :) Yesterday I also sat my first of thirteen exams. It was an English literature exam, lasting for 2 hours, and it wasn't a disaster! ;) I think it went quite well, although it's very difficult to tell. Today I have no exams, so am planning to spend the day sorting emails and phone calls out and of course doing some revision for tomorrow's exams. Tomorrow I have 4 exams totalling five and a quarter hours!!

As I've said in a previous post, my GP is struggling to get me a referral to a local M.E. unit at the moment. So I'm going to try to speak to my adult consultant, Dr W, to see if there's an M.E. unit at hospital A, as it's a big hospital. He also has lots of contacts, so I hope he'll be able to help. However, as my outpatient clinics are now 6 monthly, my next appointment with him isn't until July 1st, which to me seems a long time to wait, as I know if he puts me a referral through there will then be a wait for that. So I'm hoping to ring his secretary this week to see if the appointment can be brought forward at all.

On a more positive note I've recently sent off all the forms to enter this year's British Transplant Games which take place in Coventry from the 30th July to the 3rd August. I've entered 3 events - 50m backstroke, 50m breastroke and 10 pin bowling - but I'm not at all sporty and struggling with my energy at the moment. I'll have a try at the events if I feel up to it, but if not I can just support my team (hospital B's children's team). I've never been before, but it sounds like a great social event, so I'm really looking forward to it. While I'm there I'll also be introduced to the adult team from hospital A, so I can hopefully particiapte with their team in the future.

And some more very exciting news is that in August I hope to fly out to Pittsburg in the USA to help out at a summer camp for children who've had liver and/or small bowel transplants :D I first met Beverly, the doctor who runs the camp, at the Intestinal Study day at hospital B, which I blogged about here. The actual camp runs from Friday 14th August to Monday 17th August, but I'd like to fly out a few days earlier and fly back a few days later to leave time to get over jet-lag and hopefully see some of Pittsburg. It looks like my dietician and one of the liver nurses from hospital B will be going too and possibly some other children from hospital B who've had transplants like mine. The camp takes children from 7 to 17 years old, but because I'm 18 I'd be a junior counsellor ;) All of the junior counsellors there will also be transplant recipients. It sounds like a fantastic opportunity to meet other people my age who've had small bowel transplants, as they're much more common in the USA than here in England. Just to give you an idea of the numbers, here in England, very few adults have received small bowel transplants, I think the number is around 10. I was the 43rd (I think) child in the UK to receive a small bowel transplant, and at present just over 60 children have been transplanted. The longest survivors have now had their transplants for just over 10 years. However, the survival rate isn't that good and the majority of small bowel transplant recipients are under the age of 2 at the time of transplant, so I haven't met many small bowel transplant recipients my age. There is only one other small bowel transplant reciepient now transitioning from hospital B to hospital A with me. I hope to hear more about the camp from Beverly soon, but she's in the middle of moving hospitals, so it might be a few weeks, but I'll let you know when I hear more.

My weight this morning was the same as last week, which I was very relieved to see. When I'm at my most exhausted my appetite greatly decreases, which makes keeping my weight stable quite difficult. However as yesterday was a good day, I've got my fingers crossed that this week will be a good week and my appetite will return a bit.

Last night I discovered that my braces have broken - again! I've not quite had them for 6 weeks and this is the 3rd time I've had a problem with them :( I phoned the orthodontist this morning and have got an appointment to have them fixed a week on Friday.

I've just realised how long this blog is, so I think I'll stop now ;)