A rough week

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Long overdue update - part 1

I'm sorry I've not updated in a while. Rosie told me off for neglecting my blog, I really will try to update more regularly in future, but I know I keep saying that and not actually doing it! :P I dread to think how long this update is going to be, so please feel free to read part of it, go away and do something and then come back to read a bit more. This is quite daunting for me to write - I've got a list of notes and don't know where to start to make them into a coherent blog! I never know whether to write my blog in a day by day account or whether to try to group similar things together and write it that way. Any suggestions as to which you prefer reading? I think I'm going to try a bit of both this time. I need to try to update regularly because the longer I leave it the more daunting it gets so I just put it off and so it gets even worse :P

I've just finished writing my update and it's much too long to publish as one post - I think it'd scare people away! :P So I'm going to split it up into sections (going out, medical and other) and post them up one at a time til my full update has been published. It makes sense to post 'going out' up first, but it's very long, so I'm going to post up half of it here and the other half tonight.

This is a bit random, but this time 12 months ago I was in Japan! :D Just wanted to share that with you :)

I've been out quite a few times since I last updated my blog. On Fri 5th I attended the first meeting of a new discussion group for teenagers in the village. I was very nervous about it beforehand as it would mean being sociable, probably with some people I'd never met before as well as people I knew, and I'd been feeling exhausted that day - probably still from attending my Pathways to Internet and going to the cinema on the Wed (3rd). I felt better by the evening though so managed to attend. And it wasn't too bad at all, phew! It was much more informal than I expected. There weren't many of us there (probably because it was invitation only) – A (the odd lady from the village) who provided the food (including some weird soup that was wheat free, gluten free and dairy free!), B (who had studied philosophy so guided the discussion), me, V (who I know and get on well with) and a boy called M (who knew V a bit, but I didn't know him. He was a bit odd). We watched a 10min video made by a strongly religious man in Canada and then discussed it using prompts from a booklet. The discussion was very religious, so it was quite interesting with me being the only atheist there! :P I did feel at some points like A might be trying to convert me, but I stood my ground! A and B are strongly Christian, V believes in a God but probably not the God that Christians believe in and M said he wasn't sure, but he attends church regularly. The first discussion was all about suffering and why God makes us suffer etc. I thought they might have been better to start with something slightly less religious - I think they were surprised that I was an atheist! I was asked at one point about why I didn't believe in God, which I'd never really given much thought before, but I think I explained it well. When I was younger my logical brain told me that there couldn't be a God, but I was never sure. I used to attend church every week with Lizzy and her family as they are all Christian. Then I think the thing that made me decide that I definitely didn't believe in God, was seeing so many young children suffering and some dying when I was in hospital for my transplant. If there was a God I don't think that would happen. But that was challenged because B pointed out that as a Christian she believes that there is much more after death, but I don't believe that. Apparently I came over as quite passionate whereas M came over as very laid back about everything. He attends a private school and had obviously had a very easy and sheltered upbringing. I felt like hitting him at one point when he said that if children suffer and die young then it's just their bad luck! What an idiot. It was interesting though and some of it was a laugh. I'm going to give it another try next month.

On Sat 6th I was exhausted so didn't go out of the house. I rarely sleep in the day as it almost always makes me feel worse afterwards, but I gave in and had a nod on Sat. Unsurprisingly I felt rotten when I woke up.

On Sun 7th I had been hoping to go to London to attend an invitation only drinks and nibbles event at Holly C's photography exhibition. I didn't feel too bad when I woke on Sun but couldn't predict how I would feel later. And so because I had a very busy week coming up I decided I would be sensible and not go because I didn't know how I'd feel while out and I had no idea how long it would take me to recover afterwards. I'm really disappointed that I wasn't able to see Holly's exhibition but am going to purchase a copy of the accompanying book. You can find out more about Holly's exhibition on her photography blog here.

On Sun I really felt like I needed to get out of the house though, so me and mum decided to have a look at a new Hobbycraft that had opened locally just the day before. So we found the postcode on the website and put it into our sat nav. Out sat nav couldn't find a match for that postcode so we went with the closest postcode and set off. We ended up in an industrial estate with no sign of a Hobbycraft. And in this industrial estate there were lots of other cars turning round or stopping to look at maps! We rang dad at home who checked we'd got the right postcode. Then he phoned Hobbycraft to ask where their shop actually was. It turned out they'd got the postcode wrong and since they'd opened the day before they'd had more than 500 phone calls about it! So dad directed us over the phone and we found the location of the Hobbycraft in a little area with lots of other new shops. The car park was awfully designed and couldn't cope with the volume of traffic wanting to visit the new shops - the cars coming out couldn't get out because of the cars going in, but the cars going in couldn't get in because of the cars coming out! We eventually parked and headed for the shops.

As well as a Hobbycraft shop there was also a cookware shop, a pet shop, a garden centre, a discount book shop... We went in the discount bookshop first where mum bought a book for Alf for his birthday (coming up on March 3rd) and then went to Hobbycraft. Mum bought some yarn (surprise surprise) and I bought 3 rubber stampers for card making, a little mosaic kit to try and some 3D stickers to send to Kate. Before we left we had something to drink in the cafe in the garden centre there. By the time we left at 4.30pm the car park was almost empty. There were big queues when we got near home though due to a major road being shut for work, so loads of traffic was diverted onto out route. We listened to the chart on the radio though and it didn't take us too long to get home.

On Mon 8th I went to the post office in the morning to post off a parcel to my cousin Tam for her birthday. I made her a birthday card the night before. I hadn't made any cards in ages, but made a simple, but nice one for Tam. The outside looked fine, but then I messed it up when I muddled up my letters writing inside! Some sticky labels covered it ok though. In the parcel I also included a bracelet I'd bought her for her birthday. Tam lives on the Isles of Scilly which are a group of islands just off the tip off Cornwall. What a palaver it was at the post office trying to post it! I've posted her stuff before, I always send her a little something for her birthdays and Christmases, and I've never had any trouble in the past. The more experienced post office lady was busy serving someone else, so I was served by the other one. They're both nice though. She thought that the Isles of Scilly would just be normal postage (which it has been before) but decided to check on her computer. And she even had to ask me where the Isles of Scilly were! She then told me that it would cost 81p (more than normal) and also gave me an airmail sticker to put on it. I thought that was odd as post is usually taken across on the boat. But I went with it. Then I had to fill out a customs sticker (which I've never had to do before) to stick on the parcel. On it I had to write what was in the parcel and the value of it which was frustrating as it is a birthday present and now Tam knows how much it cost and will also know what's in it before she opens it! Grrr. When I looked at the receipt I was given later that afternoon I noticed that it said 'Destination: Sicily'! The next day I went back to the post office to mention that and saw the more experienced lady. She offered to refund me the extra 20p I'd been charged, but I said that was fine. She said that it would probably get there ok as it was addressed correctly and had extra postage on. The customs sticker wasn't necessary though. I heard from Tam since and it has got to her ok. I hope she likes it when she opens it tomorrow on her birthday. Hopefully next time I send her a parcel it'll go more smoothly! :P

When I got back from the post office on Mon morn, my mum's friend G was round. They work together and also both knit, so I just stayed out of their way while they chatted. After lunch me and mum went into town (not the town we usually go to, but another just as local town). My dental check-up went fine and I got to see my dentist before she's goes off on maternity leave :) She recommended fluoride mouthwash to me while I have my braces, but I think I can't have it for medical reasons. I'll have to check that out though. And I took an ESA medical letter with me to prove that I was entitled to free check-ups, but that went fine and they just believed that I get ESA, they didn't even want to see my letter :)

Then me and mum browsed round the charity shops and some other shops. I bought a cross stitch kit to try and picked up free iPod cases in a sale in a shop for Catherine (as they'll fit her Nano). I tried to trade in my Wii Fit game (I don't need it now I've got Wii Fit Plus, but they wouldn't touch it because it's German (I imported a copy because when I wanted a copy there were none in the UK). It plays in English, but they said they wouldn't be able to sell it in German packagine. Never mind. I found all charity shops that were on my list from Pathways To Work to phone, minus one that had closed down. And I decided that when I phone them I'm not going to bother ringing Cats Protection, as that was a tiny claustrophobic shop situated in a position where I doubt anyone will ever find it! And if I'm volunteering my time for charity, I'd prefer it to be for a charity that helps people. We then stoppped off for drinks before doing a Waitrose shop. I was quite tired by the time we finished. On the way home I called in at the surgery. The weather that day was horrible, lots of sleet and snow, yuk! We could shelter inside though, that day Alf was involved in the lambing at college, so was outside all day! He didn't actually get to be involved with the birth of any lambs, but got to bottle feed some. Awwww.

On Tue 9th I only went out the house to the post office to tell them about the muddle with the parcel the day before and to post a letter and the stickers off to Kate. I also picked up a copy of the Radio Times at the shop.

After lunch on Wed 10th me and mum went to see Chris and Sophie (and their degus) in their new cottage. The cottage was lovely, but very cold. It has central heating, but it's not very good. And it's got a big coal fire which I'm sure will heat the cottage when Chris and Sophie work out how to use it! :P Because the cottage is quite old, the doorways are low. When we were having a tour round, me, mum and Sophie had no problems as we're all quite short. But Chris, who is about 6 foot, had to duck to get through every doorway :P They seemed very happy there though, which is the most important thing. They told us the story of how they decided where to place the degus. They originally put the cage next to the stairs, but the degus hated it when the stairs were used and wouldn't stop squeaking. So they moved the cage to next to the window which the degus liked as it meant they could sit in the sun. But the degus pulled the curtain through the bars of the cage and shredded it, lol.

When we got back home on Wed I nipped out to the surgery to pick up my apple high calorie puddings. I've now had a few and although they're not quite as nice as the strawberry ones they're not bad at all, so now I can alternate between the 2 flavours. Then Claire came round :) We chatted for a bit, Claire stayed for tea and we played on New Super Mario Bros Wii together. Then along with mum we went out to the cinema to see Up In The Air. I had a lovely evening, but I thought the film was disappointing. It was predictable and really dragged on in some places. It was also not as funny as I'd expected it to be from the trailer. And at the ending it felt like the main character hadn't changed from the start of the film, which wasn't very satisfying.

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.

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 :)

Japan part 6 (final part!)

On our first full day in Kyoto, we visited a temple with some beautiful gardens. I got a bit carried away taking photos there as it was our first Japanese experience, so I'll just share my favourite photos of the temple and gardens:



Later in the week we visited a shrine with some gardens:

Another Japanese experience we tried was meditation at a Buddhist Monastery. I didn't take any photos there because there was such a calm atmosphere, I didn't want to spoil it by getting my camera out. It was really interesting to learn about the monks' way of life and meditation was definitely an experience. However, the doors of the building we were meditating in weren't shut properly, so most of us were too cold to concentrate. And then we came out and saw it was snowing, which explained why we'd been cold! We only did two 15 minute sessions of meditation, but that was plenty long enough - it's more difficult than you'd think to sit still for 15mins without getting fidgity!

We also did quite a bit of shopping in Kyoto, but I didn't think to take any photos of the shops. If we'd have gone to Japan the year before everything would have been half the price it would have been in England, but unfortunately we went when the pound was very weak, so things cost about the same - but I did see a CD somewhere for the equivalent of £50! Most prices were quite reasonable though and I'd saved up lots of money to take with me. I spent very little money on myself, but spent most of it on presents for friends and family. We discovered a fantastic Japanese sweet called Pocky - which is basically edible sticks coated in chocolate. You could buy loads of different flavours of Pocky. My favourite was strawberry Pocky, but Catherine decided to collect as many different flavours as she could find.

Surprisingly the majority of the shop assistants didn't speak any English, so asking for things in shops was a bit of a challenge. If I did manage to ask a question in Japanese, the shop assistants would then assume I was fluent so often gave a long and complex response that I couldn't understand a word of! All the shop assistants were really polite and helpful and often bowed at us, such a contrast to shop keepers in England! And if we bought presents they'd wrap them for us, without us even having to ask :)

That's the end of the sharing of my photos and tales from Japan. I had such a fantastic time and experienced a completely different way of life for 10 magical days :D I'd love to return to Japan in the future, but maybe to see somewhere different such as Tokyo. Going on a school trip to the other side of the world without my parents was something I could only dream of before my transplant. But thanks to my donor and her family it became a reality.

Japan part 5

Our second trip out on the train was to visit Himeji Castle:
The castle was on a hill, so there were some fantastic views from the top:
And this photo was taken of us in the castle (sorry it's not very good quality):
One night we wandered round Kyoto Temple:
We visited many temples while in Japan, one of which was called the Golden Temple:
Another temple we visited wasn't originally on our itinery, but Miss I remembered enjoying visiting it on a school trip when she was younger, so suggested we might like it. I can't remember what this temple was called, but it was up a big hill in Kyoto:
So we all needed to stop for a rest once we got to the top of the hill, which provided a perfect photo opportunity:
Here are some photos of the temple:
To be continued...

Japan part 4

One day we went out for the day on the train to a park called Nara.

Me and Abi on the train on the way there:
Note how many layers we're wearing. The weather on the previous two days had been much like England in February, so we definitely needed our coats. However, this day we had a heatwave! Walking through the town on the way to the park (a walk of over a mile) our layers all came off, but we were still hot. There was no shade to be found anywhere! I have to be careful in the sun because the steroids and anti-rejection tablets I'm on mean I'm more prone to developing skin cancer, but of course my sun cream was back at the accommodation. I bought some while we were out, but we needed Miss I's help in working out what it was called in Japanese! The Japanese weather was so unpredictable, just like English weather I suppose. The day after this heatwave we all went out wearing very few layers and then it snowed!

Nara Park had a big population of very tame deer:

And decorative buildings and temples too:

We could enter the temple in the photo above, but I didn't get many good photos of the contents due to bad lighting. But this is the kind of thing we saw inside:

And a staircase that appeared to lead nowhere!

While in Japan we also got the chance to wander round a typical Japanese market called Nishiki Market.
It was fascinating with so many different types of food (most of which we had no idea what they were!)
And there was lots of fish for sale too:
In the market there was also a flower shop:
And a sweet shop:
To be continued...