I'm back! Plus update on transition and my eating

Hello again, I'm back! Sorry for neglecting my blog for so long. Initially I didn't manage to update for a while due to being quite busy and then because a while had passed since my last post, updating just seemed too daunting :P Anyway, I'm back now and will try to blog more regularly :) I hope I've not lost all my followers in my absence. I can't go in to detail about everything that has happened in the last 5 months (I've not blogged properly since May) or you'd be here for ages, but I need to do some updating so future posts make sense. I'm going to try to do a small-ish update daily until I'm up to date enough to continue blogging as I used to.

I got a shock at the start of July when my consultant from Hosp B dropped a bombshell and told me that he'd decided not to transition his patients to Hosp A but instead to transition them to another hospital, Hosp Q. I was confused by this decision because Hosp Q don't even do small bowel transplants! But they're situated in the same city as Hosp B so the team there will continue to have input if their patients transition to Hosp Q. I didn't know what to do because I had a lot of faith in my Hosp B consultant and it seemed like he thought that a different hospital would be better for his patients. But after emailing my Hosp B with some questions, thinking a lot about it and attending some appts at Hosp A I decided to continue to transition to there, regardless of what other Hosp B patients would do in the future.

A few months ago Hosp A took over the organising of my 3 monthly blood tests. The transplant co-ordinator there, S, suggested my bloods were changed to 2 monthly but I insisted they stay 3 monthly because the results are all stable so I don't see any need for them to be more frequent.

On 27th May and 1st Sept I had my bloods done at Hosp H like I usually do, but this time the bloods letter was supplied by Hosp A rather than Hosp B. Both times my bloods went very smoothly as the best phlebotomist always does my bloods now, rather than less experienced phlebs trying and failing first and then having to call her in. They were done in the morning before I take my Tac (an antirejection drug) so the level of that could be checked without me having to delay or miss my Tac dose. The blood to check for my Tac level (the level of the immunosuppressant in my blood) and my CMV level (not entirely sure what that is, but Hosp A like to check it regularly) can't be processed at Hosp H so we have to post them to Hosp A. I used to post my Tac blood to Hosp B in a little cardboard box and that always worked fine. But we now have to post my Tac blood and CMV blood to Hosp A in a big-ish blue plastic box that is one use only. It's very troublesome to close and both times 2 phlebs attempted it and it was eventually closed by being banged on the floor very hard. Luckily the blood bottles weren't damaged! The second time we only put one bottle in the box rather than 2 (I don't think the bloods letter was clear) so that was sent to be processed for my CMV level and I had to have more blood taken on 29th Sept to check my Tac level. All results from the blood tests were normal :)

I have now completed my transition from Hosp B to Hosp A! All of my care is now under Hosp A and I won't be seen at Hosp B any more. I'm still not completely happy with everything at Hosp A but after lots of phone calls, emails and a couple of appts I'm now more comfortable with the team there and hopefully the rest of the little kinks will be ironed out in time. I'm much happier with the communication with the team there now. The teleconference never happened in the end because I spoke to the team at Hosp A and the team at Hosp B separately and because the teleconference had to be cancelled and rearranged for quite a few weeks later, by that time I was confident enough with the transition not to need it.

Hopefully things will be more straightforward now I'm just under Hosp A, as when I was under both Hosp A and Hosp B they got their wires crossed a lot and never knew who was organising what so they'd both request a full set of bloods at different times etc.

I used to get my Tac delivered through a homecare company while I was under Hosp B but now I'm under Hosp A I have to get it from my GP instead. Luckily my GP has no problems with that, so that should all work out fine. I was going to the GP surgery a couple of times each week to collect my medications as I was running out of them all at different times throughout the month. I've spoken to the dispensers there and I've been allowed to order all my medications at once, once a month now, so hopefully that'll get things in sync and mean I don't need to make as many trips there.

I wasn't able to see my dietician at my last couple of clinic appts, but I caught up with her when I was at Hosp A for another appt. I find her the easiest to talk to out of all the team at Hosp A and have already established a good relationship with her. She's happy to talk via email or face-to-face whenever I need her.

When I last updated in May I'd just been told I could stop having the high calorie puddings and since then my weight has continued to do well. When I stopped the high calorie puddings I think my weight was about 53/54kg which was a little bit above my target weight of 52kg (that my dietician at Hosp B set for me) so I was hoping it'd remain stable. To my amazement I actually managed to put on weight for the first time in my life without any artificial feeds or high calorie supplements! My weight got as high as 55.5kg which I was very happy with but I decided I didn't really want it to get any higher than that. My dietician said she'd like it to stay around 55kg. So rather than cutting any food out of my diet I began swapping some of the full fat milk I was drinking to semi skimmed milk and hoped that would enable me to maintain my weight. I'm now weighing myself fortnightly and when I last weighed myself on 6th Oct my weight was 55.1kg. Although I'm weighing myself fortnightly, my dietician only wants to know my weight monthly because I'm doing so well :)

The pump I used for enteral feeding has now been collected by the company who supplied it. When that went it was the first time in over 19 years (since I was 6 months old) that we'd not had a pump of some kind in the house :D

I go through phases where I find eating very difficult, but at the moment things aren't too bad. I've had some mild nausea but it hasn't got in the way too much. I've been trying to be a bit more adventurous with trying new foods. I picked up a lovely vegetarian sushi selection in Sainsbury last week which I had for lunch instead of my usual sandwiches :) And just yesterday I had a vegetarian and chicken sushi selection from Tesco. I also discovered I like chicken stuffing sandwiches which was good for when we're out and about because nowhere sells my favourite marmite sandwiches ;) But then I realised that the chicken stuffing sandwiches are probably made with battery chicken so I stopped eating those. I'm not sure that avoiding battery meat when we're out is going to be a viable option for me though because I don't like many other sandwich fillings. Using battery chicken also spoiled a nice family meal out to an Indian restaurant a couple of months ago because they didn't have any options with free range chicken, so me and mum went veggie for the night. At the end of the meal we tried to complain to the staff but explaining the difference between free range chicken and battery chicken to someone who doesn't speak much English is quite a challenge, so my mum ended up pretending to be a chicken to try to get the message across, hehe :P

My weekend

On Fri I felt a bit more down than usual in the morning but I was ok. I discovered that my slippers were about to fall apart which is frustrating because I've not had them very long. I think that my feet are too wide for them so they've burst the stitches. I definitely need to do a clothes shop soon because all my clothes seem to be falling apart! That morn I had a chat to my parents about my rent and it's been increased slightly but the monthly amount is still manageable out of my benefits money.

That aft me and mum were going to go and see my nan, but I had bad tummy pains again so decided to stay at home while my mum went out. I don't know why my tummy pains have got a lot worse over the last few days. I did miss one dose of Amitriptyline but wouldn't have thought that would cause this. I'm only on a very small dose of Amitriptyline so am going to ask my Hosp A consultant when I see him in a couple of weeks if increasing my dose might help. My next clinic is now just 2 and a half weeks away and I'm still not happy about completing my transition then, so will let the team there know that when I see them. I'm still waiting to hear back from S about my questions relating to Tac bloods.

I was sorry to miss seeing my nan on Fri so hopefully I'll see her at some point this week. My tummy soon felt a bit better so while mum was out I watched a DVD called Jumper which I enjoyed more than I expected.

Then I heard that Ellie Goulding had announced dates for a UK tour in Oct/Nov and would be coming to a seated venue near me. I saw her supporting Little Boots last Oct but didn't know her or her music then so would love to see her again now I know more of her songs. The tickets go on pre-sale on Wed morn so I'm going to try to get some then. I'm waiting to hear from Claire about whether she'll be free to come with me and mum.

On Fri I really struggled with eating my tea. Generally I'm finding eating a bit easier at the mo but sometimes I do really struggle with it. That eve I really enjoyed watching the penultimate episode of Ashes to Ashes with my parents. I can't wait for the final episode on Fri but also really don't want it to end. Before I went to bed that night I listened to Diana Vickers' album, Songs from the Tainted Cherry Tree, and Little Boots' album, Hands. I've been listening to Diana Vickers' album a lot but that was the first time I'd listened to Little Boots' album in a while so I enjoyed that.

I didn't feel too good on Sat but I didn't feel too ill. I really struggled to get up in the morn, I was more tired than usual, my feet ached all day (not the pain I usually get but just lots of aching like I'd done too much walking the previous day, but I hadn't) and I felt quite lightheaded at one point.

Something I struggle with at the moment is wearing clean clothes. They often feel very uncomfortable for an hour or two when I first put them on, especially my jeans. I thought this was just me being weird but I've recently discovered that having oversensitive skin can actually be a symptom of ME. I don't think there's anything I can do about it though. I also find that finding new clothes that are comfortable is very difficult so I'm not looking forward to having to replace all my clothes that are starting to fall apart.

That morn I watched Embarrassing Bodies: Kids on 4OD. I was very excited to receive a text as I thought that meant my mobile was working again, but it wasn't. I had a little look at my DLA forms and I relieved that they don't look too hard to fill out as it's mostly just ticking boxes. Not sure how I fit into their categories though, so I suspect I might end up losing my DLA. I've decided that I'm going to try to get them completed and sent off before my parents and brother head off to Glastonbury in just over a month. I just need to find a time when dad can have a look at them with me.

While I wasn't feeling so good I listened to The Family Jewels by Marina and the Diamonds on my iPod. Then Chris popped round. It was nice to see him and he stayed for tea. He's going to try a different job so he was telling us about that. He currently helps to manage a restaurant that is attached to a hotel and he's always worked in bar work or catering (not actually cooking, but managing). However he's decided to go across to the hotel and work there with administration, finances and working at the reception etc. The pay is the same and it's the same hours though at more sociable times. He's interested to learn more about how the hotel works and it'll look good on his CV too. He's starting a few hotel shifts this week and then increasing them over the next couple of weeks. Hopefully it'll all go well for him. His car's broken again and isn't reparable this time. That's what happens if you buy cars from eBay! Chris also had a fiddle with my phone but had no idea what the problem was. Mum remembered that there is a Nokia repair place nearer than a T-Mobile shop so we thought about taking my phone in to be looked at there.

On Sat eve I enjoyed watching Doctor Who with my family. I thought Sat's episode was really good and very original. After that I watched the music channels for a little while and then a good film on BBC3 called Flightplan. That eve I had tummy ache, which isn't a time I usually have tummy ache. This was just an ache though rather than a pain so I managed to get to sleep ok with it.

On Sun I got up about 2/3 hours earlier than I usually would and with my parents I headed out to the annual carboot sale at my old secondary school. I was quite worried about bumping into people I knew there, but I only saw 2 and managed to avoid them seeing me :P At the carboot sale I picked up a couple of things for Claire (an old Take That annual and a Tardis tin), 3 books (the Script book of Juno because I love the film, the novel Stardust which I hope to read at some point because I recently enjoyed watching the film and a children's book by Malorie Blackman which I used to enjoy reading) and 4 DVDs (Beaches, The Magic Bubble, Down with Love and Aardman Classics). When I met up with my parents at the end mum showed me a Nokia 3310 that she'd picked up to me. I've been using it since then and it's fantastic to be able to phone and text again :D The only thing I miss with using an older phone is the camera, but apart from that it does everything I need and should last me til Chris passes his iPhone onto me at the end of Sept.

I felt a bit odd that afternoon which I think was probably due to getting up much earlier than usual. And I also had more dizzy spells than I had been having for the past week or two. Hopefully my dizziness will clear up completely soon, fingers crossed. When I got home from the carboot sale I was really pleased to hear that Tori had received her transplant call. Since then she's had her transplant and it sounds like she's been making really good progress. I don't know Tori personally but have been following her blog for a while now.

I enjoyed doing a couple of little jigsaws and then sorted through the HDR and deleted some recordings. While I was doing that I rewatched the first part of the first episode of the current series of Doctor Who with mum, watched last week's Friday Night with Jonathan Ross (to see Alexandra Burke being interviewed and Ellie Goulding performing) and watched the music channels for a short while. Then I put out all my tablets for the week and made a note of which ones I was running short of.

On Sun eve I rewatched Mamma Mia with my mum. We quite enjoyed watching it together but I don't think it's as brilliant as everyone seems to say it is - it's so cheesy and some of the songs have no relevance at all to the plot (especially The Winner Takes it All which had me and mum in fits of the giggles much to dad's bemusement!).

Later that eve I felt really down about everything and kept crying. I know it's silly as I've not really got anything to be upset about and I know that my health and my life is much better than lots of people I know, so I shouldn't get upset, but you know how it is sometimes.

To try to cheer myself up after that I decided to try out a new Wii game called Okami which had some really good reviews. It looked great but unfortunately the game requires drawing lines with the Wiimote and my hands aren't steady enough to do that so I can't play the game, which is very disappointing. Before I went to sleep I started listening to the latest ONM podcast.

This morn I helped mum out with some errands around the village. We went to the surgery (to drop off a prescription for me and pick up mum's tabs), the library (for mum to do some cleaning and I picked up a Scoubidou book and a DVD), the post box (to post back one of my rental DVDs), a shop (to buy some croissants, milk etc) and another shop (to buy some bread).

While me and mum had lunch we watched the music channels and part of a stand up comedy programme by Dylan Moran. I was also given a link on Facebook to a letter written by Nick Clegg about ME which you can view here. I was very impressed with it.

This aft I had a bit of a meltdown. I don't really want to go into detail about it but I just got really really upset for no real reason and ended up going back to bed for a few hours. I don't know what's up with me at the mo.

This eve I listened to Ellie Goulding being interviewed on a radio programme which you can listen to here. After tea I ate my final high calorie pudding, yay! :D I'm now going to see how my weight goes without having one high calorie pudding each eve. I'll weigh myself tomorrow and then hopefully when I weigh myself again 2 weeks later my weight won't have dropped. I've just watched the 2nd part of Wormwood Scrubs and the 3rd episode of Bizarre ER. I'm currently watching The Graham Norton Show because Ruth Jones is being interviewed and Katie Melua will be performing The Flood later. I'm never been a Katie Melua fan before, but I do like The Flood. I've just been laughing aloud at them talking about accents, very funny.

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A busy few days

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

My weekend, health and Rachy

On Fri morn I felt quite depressed at all the election stuff. I'm not going to talk much about it here because I'm sure you're all fed up with politics now, but I was disappointed that Lib Dems did so badly and that the Tories got the most votes. I'm also concerned about what a coalition will mean especially if it ends up being between the Lib Dems and the Tories because they have such contrasting views.

That morn me and mum went out to see my nan though and that really cheered me up :) The first thing she asked me was whether I'd got my iPod with me because she was really keen to listen to some more music. I let her listen to Blue Eyes by Mika which she enjoyed but she said she preferred Marina and the Diamonds, so I let her listen to I Am Not A Robot. She loved that and was tapping her feet and singing along :) Next time I visit her I'm going to take her a copy of Marina's album and teach her how to play it through her DVD player or laptop. Mum and dad have also told me that she's just bought herself a new digital camera so I've got to teach her how to use that. I suspect it'll be a long job because she'll want to know what every button and every function do! :P

My copy of the latest issue to the Official Nintendo Magazine had arrived in the post that morn so I just relaxed and read that in the aft.

On Fri I received the email from S at Hosp A that she'd promised me before the end of the week and I'm not very happy. She basically said that they do things similarly to Hosp B but told me that I'll need to have my Tac blood taken at clinic because they don't use Tac kits. Then she confirmed the dates of the next clinic and said she'd see me there. That was the entire content of the email I'd waited 6 weeks for! The plan for these 3 months was for me to become happier about communication with the team and for me to find out how things will work when I'm under Hosp A. Neither of those things have happened - I've discovered that being told a reply will take one week can turn into 6 weeks and I still have no idea at all how they do things at Hosp A. Aaarrrggghhh! I'm really worried about this transition as I still have no confidence in the Hosp A team. I don't think they'll be any better with communication once Hosp B are out of the picture and that worries me. And I don't want to find out how they do things when they need to do them and then discovering the problems, I want to know in advance so stuff can be sorted out.

On Fri eve Claire came round for tea and we had a nice time together playing a card game called Ligretto, chatting and playing on my Wii :)

Yesterday (Sat) I had a pyjama day and can't think of much interesting to report about it :P I finalised an information page for Transplant Kids with Emma and enjoyed watching Doctor Who, rewatching Ashes to Ashes from the previous night and rewatching episode 6 of the second series of Outnumbered. I also watched a funny film called Zombieland. I don't usually watch horror films but this was a horror comedy and I was surprised at how much I enjoyed it.

I've had a lazy day again today (Sun) because I've been very tired. I enjoyed playing on New Super Mario Bros Wii for a little while and watching a film called Stardust. Lizzy recommended Stardust to me a little while ago but I kept putting off renting it because I don't usually enjoy fantasy films. But Tesco DVD rental sent it out to me so I tried it and was surprised at how much I enjoyed it. Today I also watched 2 episodes from series 2 of Outnumbered with my parents.

This evening I noticed that I'm running short on high calorie puddings so will need to give another prescription in at the surgery soon to get some more. But I thought before I do that I'd email my dieticians and ask them if I can stop having the high calorie puddings now because my weight is doing so well. I sent that email tonight so hope for positive replies within the next couple of days, fingers crossed. The high calorie puddings are the best high calorie supplements I've come across, but they're still not very pleasant and I can think of other foods I'd much rather eat instead.

I'm having serious problems with my mobile phone at the moment, grrr. I don't know if the 2 problems are connected or separate. The battery isn't fully charging and won't hold its charge so it's running down within less than 12 hours at the moment (compared to the week or longer that it used to hold it's charge for) which is really frustrating. The obvious solution to that would be to buy another battery and I've found that they're very cheap on eBay. But I've done some enquiring and it seems that the battery running down so quickly might be because the phone is having to work extra hard to get signal as the other problem I'm having at the moment is having no signal in places I'd usually have full signal. My phone only needs to last til the end of Sept and has never had any problems before so I didn't know what to do. I phoned Chris this eve and he said that he thought the signal problems might be because the battery level is often low, so he suggested buying a new battery and seeing if that helps. So I ordered one from eBay tonight. Hopefully that'll arrive soon and fix the signal problem as well as the battery problem, fingers crossed.

This weekend my parents have been getting some of the Glastonbury stuff out to start preparing (Glastonbury is at the end of June). It's usually just dad and Alf that go so they've only got 2 sleeping mats, 2 sleeping bags etc, but mum is going with them this year (I'm staying at home in the warm and dry!) so they're having to sort out what mum needs to buy. They ordered her a sleeping mat and sleeping bag today online. When mum was trying out dad's sleeping bag the other day dad zipped it right up so she completely disappeared inside! I wish I'd had my camera handy! Mum has never slept in a sleeping bag before so that'll be a new experience for her. When she was trying out dad's she discovered it was too narrow for her to lie comfortably in (she sleeps in a weird position that's hard to explain in words), so dad ordered her a wider one. Mum has also ordered a clever gadget called a Shewee.

I've not got many plans for this week at the moment. Tomorrow (Mon) I'm going to visit my nan with mum to help her sort through her books and hopefully get rid of some. My nan isn't very good at getting rid of things though :P And my only other plan for this week is a physio appt on Wed aft.

Since I did the last blog post about my health as part of my big blog update I've though of a few more things to post about. My dizziness completely disappeared from last Sat eve to Tue eve which was fantastic. It then came back again but wasn't nearly as bad as before and I was only getting maybe one very brief and mild dizzy spell each day, which was a relief. However tonight while I've been sitting at my laptop I've been feeling quite dizzy despite sitting still, so I think I might try to make a GP appt tomorrow to get this checked out.

I sometimes go through spells of getting coldsores and have had a couple over the last few weeks. Sometimes they occur when I'm run down but I don't think my health is worse than usual at the moment. I thought the first one might have been caused by being out in the sun but the second one came in the gloomy weather so I don't know. They can be so sore and annoying though. Fingers crossed I won't get any more for a while.

I have been very nocturnal recently, which is annoying but I'm just trying to learn to live with it now. Going to sleep at about 4am the other night meant I probably didn't get enough sleep though.

My dad has recently self diagnosed himself with plantar fasciitis (the foot problem I have) in one of his feet. He wouldn't stop moaning about it when he first decided that was what it was - typical men! But he read on the Internet that stretching could cure it (my GP told me there was no cure) and now he's been stretching he says it's a lot better. At least he's stopped moaning so much now.

As I've mentioned before, my dad has recently started enjoying swimming and goes most days now. However we suspect he might be a bit allergic to some aspect of it because he always comes back sniffing and sneezing! Dad mentioned a few weeks ago that now he's achieved his goal of swimming 1 mile in a swimming pool he wants to try it in open water! I've not heard anything about that recently though so I suspect he might have had second thoughts.

My dad had a go at me the other day because he thought it was lazy of me not to be making my sandwiches at lunch time and asking mum to make them for me instead. After some upset I managed to explain to my parents that I don't like eating at the moment (although I have better days and worse days with that) and so I also don't like having anything more to do with food than I have to. Dad had no idea about the little things I often do around the house to help mum out during the day (emptying and stacking the dishwasher, pegging out and getting washing in, putting washing in the airing cupboard and getting it out and putting it away, going round to the local shop when we run out of things...) so when me and mum told him about that I think it made him see that I'm not being lazy. It was agreed that mum would continue making my sandwiches for me when she's in and I'll keep helping her out around the house.

Rachy has been in the media again a few times recently, she seems to be making really good progress at the moment and even wrote a blog post just over a week ago which you can read here! You can read an article from her local newspaper here, an article from the BBC news website here and you can even hear her talking on BBC Radio Manchester here! The radio programme will only be available to listen to online til Thur morn, so please have a listen before then. Rachy's bit is at 2hrs and 51mins through.

My blog is almost completely up to date now. I just want to write a little bit about what music I've been listening to and share some photos of mum's recent knitting photos with you. I was going to put the photos up tonight, but they're not on my laptop at the mo so I'll have to get them from the family computer tomorrow. I'm also going to do a post in the next few days about ME Awareness Week 2010 which is running from the 8th to the 16th May.

While I've been writing this up I've put Mika's music on :D I'm not sure why I've not learnt yet that that isn't sensible at this time of night because it makes me go hyper :P

Getting up to date with April - part 7 (more day to day stuff)

I decided on Tue 20th that I would let myself buy some more DVD boxsets if my total spending (not including rent, Tesco DVD rental and magazine subscription - my regular monthly payments) in April didn't exceed an amount that I set then based on what I'd spent so far during April. I thought that I'd let myself buy some DVD boxsets to take my spending that month up to the amount I set, but I ended up spending only £5 less than that amount which wasn't enough for a DVD boxset that I wanted. However I had had some unexpected outgoings towards the end of April including Alf choosing to cash his birthday IOU for an iPod charger so I decided to allow myself to spend a bit more than £5 on a DVD. I struggled to choose between Gavin and Stacey series 2 and 3 or Outnumbered series 2 and very nearly bought them all at once. But on Sun 2nd I decided on Outnumbered and ordered it that night. I'll get the Gavin and Stacey DVDs at another point, maybe at the end of this month/start of next month if I don't spend too much this month (I might aim to spend less than last month).

Mon 3rd May was Bank Holiday Mon so there were some local carboot sales on that me and my parents decided to have a look at. First we went to a one off carboot sale in a pub carpark in a neighbouring village. There I bought a DVD called In America DVD for 50p, 7 DVDs that had been free with newspapers for a total of £1 and 15 CD cases for £1. It was very chilly while we were looking round and there were some light showers too so I left my parents still looking round and went back to sit in the car round the corner to warm up. While I was sitting in the car another shower started up which got quite heavy and then it started hailing. I was very smug sitting all warm and dry in the car. Dad sensibly found some shelter in the pub car park til the hail eased but mum decided to run back to the car in it. She got soaked!

We then went back home and dropped dad off because he'd decided the weather wasn't good enough to go to another carboot sale. Mum changed out of her wet clothes, we both wrapped up a bit warmer and then we headed out to the carboot sale we usually go to. There were not as many stalls there as there usually is and the DVDs were all £2 each rather than £1 each so I didn't buy anything. Mum picked up a few things though including a weird thing that moos like a cow! On the way home we called in to visit nan briefly and give her back her mobile phone that we'd sorted out for her. The phone in her new flat wasn't going to be reconnected til Wed so it was important that she could use her mobile til then.

On Tue 4th May I weighed myself like I'm now doing fortnightly. It was also my monthly weight to email my dieticians with. My weight was 54.3kg - so up 0.6kg on the previous fortnight and up a total of 1kg in a month. Both my dieticians were very impressed and are happy for me to keep weighing myself and contacting them monthly. I never thought I'd say this, but I don't really want to put any more weight on now. If my weight is up again next month then I'm going to ask my dieticians if I can stop my high calorie puddings because I don't really like them.

That morn I walked to the post office and the local shop and also walked round to the surgery to drop in a prescription for me. That aft I had to return to the local shop when mum discovered that she'd run out of washing liquid for the washing machine. When mum got back from work at the library she showed me her first knitting needle injury - somehow a knitting needle had attacked her leg through her bag and her jeans and had left a visible scratch. Her leg is fine now though.

That evening I went to another meeting of the teenage discussion group in the village. V wasn't there so it was just A and B who lead it, me, K and M. The discussion on Tue eve was very religious - yawn! We did have some interesting discussion, but I'm not sure how we got onto talking about whether knitting is divine or not?!?! Although I'm a very private person about my health I don't mind mentioning it when it's my choice and in my control, so I brought it into the conversation because I felt it was relevant. I started off by saying "I don't know how much you know [because I didn't know if K or M knew anything about my medical history] but I had a transplant a few years ago" I know A knows about it all because she knows my mum and I assumed A had told B everything. So I was really surprised when B said that she didn't know that! We had an interesting discussion about politics at the end. K isn't 18 until the summer so can't vote yet, but the rest of us could. Me, A and B all said that we would be voting Lib Dems and proceeded to discuss all the parties. M kept very quiet. He's very posh, privately educated and quite stuck up so I assumed his quietness was because he's a Conservative supporter! They were all talking about the different politicians they've had coming to their doors to try to swing their votes, but we've not had any of them this year which is probably because we've got a Lib Dems sign in our garden :)

Yesterday (Wed 5th May) I emailed S (the transplant co-ordinator at Hosp A) again because it was 6 weeks since she'd promised me an email and I'd still not heard anything. In this email I just asked if she could please reply to my email from March 22nd as she said she would in her email dated March 23rd. She replied very quickly saying that she'd not forgotten me but she'd been off work for a while. I've been promised a full reply by the end of the week so hopefully I will get that. Only 5 weeks to go til my transition is due to be completed and I'm still no happier about it, eek! I wish S had just dropped me a quick email letting me know that it would be a while til she managed a full reply. Replying 5 weeks later than promised isn't really fair on me - I'm supposed to be learning to trust this team!

Yesterday morning I got up at 8.45am (which is very early for me) because I'd heard the previous day that the presale for Marina and the Diamonds' Oct/Nov tour would start on the Wed. However it didn't say a time, so I got up so I could be at my laptop by 9am in case they went on sale then. I kept refreshing my email page because the link would be sent to me in an email and the email eventually came through at 12.30pm - I'd been sitting there all that time! And as you'll have seen from this blog post, I got tickets!! :D

In the afternoon me and mum popped round to see my nan because although we'd returned her mobile phone on Mon we'd forgotten to return the charger too! I helped my nan sort out a few things on her computer while we were there. And on the way we called in at the local garden centre where mum bought some geraniums for the garden. I tried to persuade her to buy the red ones but she chose some pink ones instead.

Yesterday I discovered that my phone was playing up as although I could receive phone calls and texts I couldn't make them, it kept saying there was a connection error. I phoned my older brother Chris who knows about these kind of things and left a message on his answer machine asking for help. Also my phone alarmed low battery even though I'd charged it recently so that made me wonder if there was a problem with the battery too. The battery has seemed fine since though, so maybe it was just a one off thing.

Dad pointed out to me that there was a double page article in the local paper about ME so I found that to have a read. The article started off well but then went on to say how this sufferer had been cured by something called the Lightning Process and had then gone on to train as a teacher of the Lightning Process. There isn't a cure for ME although there are lots of people offering expensive cures that have no scientific evidence behind them. The Lightning Process is one of the most well known and some people are apparently miraculously cured by it although it sounds very doubtful to me. It costs a lot of money and there are lots of criticisms of it and no scientific proof that it works. So I thought it was a shame that the article in the local paper was so much about what a great cure the Lightning Process is. However, there was one small paragraph about criticisms of it, so at least they were acknowledged.

Today I got up early (9am) and me and mum headed into the city. We drove to the Park & Ride on the outskirts of the city (dropping Alf off in a local town on the way through) and then got a bus into the city centre. I enjoyed listening to Marina and the Diamonds on my iPod on the bus journey. Me and mum went on a long walk out of the city centre along a road with a few charity shops on. I bought 2 cheap books in one charity shop - one was a children's book that I used to like and one was a quick read. We stopped for drinks and then wandered back into town although we did have to ask for directions on the way! We walked for about an hour and a quarter in total then, which I was quite impressed with. When we got back into the city centre we met up with mum's friend for lunch in a cafe. I had a baked potato and we all chatted together. On the way out of the shop I picked up a local magazine because it had an interview with Diana Vickers in it. My tummy pains were bad while we were out :(

Me and mum then split up so she could go to her wool shop and I wandered round the shops but didn't buy anything. When me and mum split up I decided I'd better check to see if my phone was working and to my surprise it was :) So I'm not sure what the problem had been - maybe a network problem. I received a lovely text from Lizzy saying thanks for Mia's presents :) When I'd finished wandering round the shops I wanted to look in I still had a bit of time before I was due to meet up with mum so I found the films section in Waterstones and sat on a comfy sofa reading a book about Pixar animation :) Me and mum met back up, had drinks and some shortbread in a cafe (mum knocked our table which resulted in my glass of milk spilling over my jeans, whoops!) and went into a couple of shops (including M&S for some biscuits for me).

We then headed back to our car on the Park & Ride bus and then mum drove to Tesco on the edge of a local town where she had agreed to pick Alf up. Me and mum did a little Tesco shop while waiting for Alf. I was very pleased that I managed to resist buying Diana Vickers' album. It's on Spotify so I can listen to it for now without having the CD, so I decided to wait til the CD drops in price to buy it and be able to put it onto my iPod.

We dropped Alf off at home and went to our local Polling Station to vote. I saw the start of the BBC's election coverage and hope that the exit poll isn't representative of the actual results. The exit poll was created by asking random voters across the country who they'd voted for. And it suggested that we'll have a hung parliament with Conservatives getting the most seats, followed by Labour. It also suggested that Lib Dems will actually lose some seats. I'm supporting Lib Dems so I hope they do better than that. I do suspect that the Conservatives will win though :( I'm not watching the election coverage on TV tonight, I'll just check how the seats are going on the Internet before I go to bed and hear the final result when I get up tomorrow morn.

When we got home I saw my morning tablets out in the kitchen. I'd got up too early to take them this morn so put them out ready to take before we left the house. But I'd forgotten. Whoops! Think that's the first time I've ever done that. I took my Tac as soon as I got in plus the tabs that I only take in the morn and then tonight I took the tablets that I take twice a day minus my Tac. I think that should be ok as sometimes people have to delay taking their Tac if they're having a Tac blood test done at the hosp.

When we got home I also saw my post. Outnumbered series 2 on DVD arrived, so I'm really looking forward to watching that :) Unfortunately there was also something else waiting for me in the post. I opened it to discover my DLA renewal forms - arrrrgggghhh! The last time I applied for DLA was just after my transplant so lots of things have changed since then - my health problems related to my transplant have reduced but I've developed ME. Unfortunately people who have ME struggle to get DLA. I've got a few months to fill the forms out and dad said he'll help me with them, but I am still worried about it. I found the ESA forms hard, this is going to be even harder.

That's now my day to day updates completed but I'm going to do a couple more updates about other bits and pieces before my blog is completely up to date. It's definitely nearly there now though :)

Getting up to date with April - part 1 (health)

I'm sorry I've left it so long to update, I just seem to have had a really busy couple of weeks. Getting up to date will take a few updates so I've decided that starting from tonight, each evening I'm going to type up some of my notes for a set amount of time and then post up what I've written. This way hopefully it won't be too daunting for me and won't be too long for you to read either. Fingers crossed! So part 2 will hopefully be up tomorrow evening.

I'm not sure where to start, hehe. Think I'll do a bit about my health first :)

After I last emailed my dieticians my weight, as I said in a past blog update they said that I could now start weighing myself monthly. I was a bit concerned about how much weight I could potentially lose in a month, so agreed to that but decided to weigh myself fortnightly at home. On Tue 20th April I weighed myself and my weight had risen 0.4kg in a fortnight up to 53.7kg :) Next Tue (4th May) I'll weigh myself again and email my weight to my dieticians.

I had to chase up Hosp B about my Tac level, but when I did I was told that it was 6.9, which is perfect as my target Tac level is 5 to 8. That'll be rechecked with the rest of my bloods at the start of June. I also received a Tac delivery from the homecare company that supply me with it, so I've got plenty now.

I've still not heard back from S, the tx co-ordinator at Hosp A. I'm meant to be completing my transition on 7th June, which is now just 5 and a half weeks away, and yet nothing more has been sorted since my last clinic (8 and a half weeks ago) and the lack of communication from the team at Hosp A is more of a concern than it's ever been! Following the last transition clinic at the start of March, S asked me to email her about how everything currently works under Hosp B. I sent that email on 22nd March and on 23rd March S replied. She said that everything looked similar to how it'll work at Hosp A so she thought transition would be simple. She then said that she would be away for a week from the following day but would be in touch when she got back. Since then I've heard nothing. I sent S an email on 20th April just saying that I hoped she'd had a nice week off and a lovely Easter. So not really chasing her up, just reminding her that I'm here. She's not replied, so within the next few days I'm going to send her a more specific email asking for a reply to my email from 22nd March. This is not helping my confidence in the transition!

At my transition clinic in March I asked my consultant for another referral to the gynaecologist there. I saw her previously but at that point everything was fine so she said she didn't need to see me again. I'm currently taking a form of the Pill called Cerazette because I was diagnosed with an ovarian cyst (using just an ultrasound scan) in Dec 2007 after being admitted to hospital monthly for a few months with intense pains that I required IV Morphine for. I was started on the Pill after that and haven't had the pains since. After I started on the Pill my periods continued to be very heavy (they always had been) and became more irregular. After talking to my GP about this he recommended doubling my dose of the Pill which he said would stop my periods, so I did this. It has stopped my periods for the most part but in Feb I was on my period for 3 weeks of the month and I've been surprised with one or two more random periods since then. So hopefully the gynaecologist will have some suggestions. I received an appt letter a couple of weeks ago for an appt on a Tue in June. My mum works on Tues' but Chris said him or Sophie will be able to give me a lift.

My tummy pains do seem to have improved since starting on the Spasmonal and Amitriptyline that I was prescribed at my last clinic. I'm still getting them and they're still very painful some days, but I think generally they're slightly less infrequent and slightly less painful. I gave up taking the Spasmonal about a week ago because from accidentally missing a few doses I realised it wasn't doing anything. I'm continuing with the Amitriptyline though and will talk to my consultant at Hosp A about it when I see him again in May. It was also hoped that the Amitriptyline would help my nocturnalism but it hasn't and I'm still as nocturnal as ever. And no matter how late I get to bed I always lie there for an hour or so before falling asleep.

From last night til this afternoon I felt constantly dizzy which is something that's never happened to me before. It was especially bad when I was in bed trying to get to sleep last night, it felt like I was moving. I have no idea why it happened but hopefully it wont come back again, fingers crossed.

My heels have been playing up a lot recently and the heel cushions and arch supports I bought for my shoes don't appear to be making any difference at all. They're often very painful when I've done a little bit of walking, though not always. And sometimes they're painful for no reason at all. But I had a physio appt last week (which I'll write more about later in another update) and the physio I saw said that she'll have a look at my feet when I see her again in a couple of weeks. I really hope she'll have some suggestions.

Although it's lovely to see some sun and not be cold all the time my body doesn't seem to react very well to the heat at all. When I'm out on a warm or hot day I often feel very lethargic, headachy and generally quite ill. But if it's cool or cold I'm constantly freezing. I can't win! :P I wore loads of layers over the winter but over the last few weeks I've gradually lost a few of them. I'm now no longer wearing leggings under my jeans or t-shirts over my polonecks :) I am still in polonecks though and still wearing vests for now :P

I've had my ears pierced for about 8 years now and my piercings have always been fine, I've never had any problems at all - up til now. Over the last couple of months my piercings have got very sore after wearing some earrings - not infected, just sore. I've tried wearing different earrings, including some that I was quite sure were gold, but my ears are still getting sore. I've had no earrings in for the last week or so because it seems that's all I can do at the mo. I'm going to try to find some that I'm certain are gold and see how they go.

My energy levels and levels of exhaustion have been up and down as usual. Surprisingly I coped quite well with my hectic fortnight, but did have some bad days.

I'll blog again tomorrow :)

Organ donation in the news, trips out, an AYME meet-up and politics

Whoops for leaving it so long since my last update again. Looking at my notes from this week I think this update shouldn't be too long, but I never know until I've finished writing it, so fingers crossed.

At the end of last week I developed a rash on my hands and face after going in the sun, despite having factor 50 suncream on. At first I assumed it was a reaction to the sun, but after using a different suncream it seems more likely that it was a reaction to the suncream I used.

I forgot to weigh myself last Tue morn, so did it on Wed instead. My weight was 53.3kg, which was 0.3kg more than the previous week but exactly the same as the week before. It was the week I have to email my dieticians so I let them both know. My Hosp B dietician replied promptly and said she was impressed with how stable my weight was so would be happy for me to weigh myself monthly now. My dietician from Hosp A took a bit longer to reply as she was away for Easter, but she was happy with that too, so I don't need to email them my weight again until May. I'm a bit concerned about how much weight I could potentially lose in a month if I was to start losing weight, so I'm going to weigh myself fortnightly at home for the time being.

Last Wed I took some blood at home from a fingerprick and posted it off to Hosp B for them to check my Tac levels from. I also phoned them to let them know that the blood sample was on its way. I've not heard the result yet, so will chase them up about it later this week.

On Tue I got a phone call from the company who currently deliver my Tac asking how much I had in stock so they could decide if I needed another delivery or not. I was out at the time so they said they'd phone back the next day. They rang back on Wed while I was still in bed, so mum took the phone call. They'll deliver some more Tac a week on Wed.

Rachy is still continuing to make steady progress, so don't forget to keep following her updates here. Rachy had an article in her local paper last week which you can see here.

You may have seen that there was a story about organ donation all over the news yesterday. You can see the story on the Telegraph website here. It's a shame that the media seem to have completely blown the story out of proportion, I really hope it doesn't put people off registering to be an organ donor. You can read LLTGL's blog response here and Sarah has also written about it in her latest blog update here.

Once again I seem to have been quite busy since my last update. On Wed I went into Barnardo's for an hour. For the whole time I was there I was hanging clothes up, which got quite boring. It was very busy and noisy because there were lots of volunteers in. I was the only one doing any work though, the rest of them were just chatting. At least I didn't knock over any boxes of size cubes this time! When I'd finished I wandered round the charity shops in town. From Barnardo's I bought a copy of the DVD Nicholas' Gift which I'd rented and watched just a couple of weeks ago. I was pleasantly surprised to find that I get a staff discount of 20%. In another charity shop I picked up Jungle Book on DVD. I saw a PS1 game in a charity shop that I bought on eBay recently for significantly more money, but never mind.

On Thur it was lovely and sunny so me and mum decided not to go to the cinema but instead to wander round a local town that I'd not been to for a while. While we were out we stopped for drinks and found 7 charity shops :) In the charity shops I bought a book called Ten Thousand Sorrows by Elizabeth Kim for 75p, The Weakest Link PS1 game for £1 and 2 DVDs (Maybe Baby and Silkwood) for just 19p each as they'd originally come free with newspapers. In one of the charity shops I saw a woman who was there with her daughter. This lady was quite demanding with the shop assistants and rude to her daughter. When her daughter was talking to her she responded with 'Am I bothered?' just like the Catherine Tate character, but she wasn't doing it as a joke, that was her genuine response! :P While we were out we also bumped into a lovely nurse from Hosp H that we used to know well, so it was nice to have a quick chat to her.

On Fri morn before I got up, mum and dad went out to a fishing shop in a local city to look for a fishing bag to carry mum's giant knitting needles. They found the perfect one. Alf had planned to go to the cinema with his friends that evening, but they decided to go in the afternoon instead. They couldn't contact Alf because his mobile phone battery was flat, so they just turned up at our house at 12.30pm. Of course at this point Alf was still in bed, so there was chaos as he tried to get himself up and ready to go, especially as I was in the shower at this point! He got out eventually though and enjoyed seeing the film Kick Ass with his college friends.

On Fri aft Claire came round. We did lots of chatting, played a great card game called Ligretto, watched the DVD Coraline together and played on New Super Mario Bros Wii. As well as playing on New Super Mario Bros Wii with Claire, I've also played on it a bit on my own this week and am getting closer to completing it :) Claire is coming round again tomorrow and we're going to see if we can finish it, fingers crossed! I've bought myself a new Wii game this week from Amazon called Boom Blox Bash Party, so hopefully that'll be delivered later this week. I've not played on my PS2 for a little while, but am looking forward to playing on it again :)

On Fri night Alf went round to a friend's house in the village and none of us knew what time he'd be home. Usually we lock up and hide a key somewhere where he can find it to let himself in, but on Fri night the spare key seemed to have disappeared, so my parents decided to leave the door unlocked. At about 1am I was ready for bed, my parents were already asleep but Alf wasn't back yet. I didn't feel comfortable for the front door to be unlocked when we were all in bed, so I crept downstairs, found my spare key and put that out for Alf. I'd just locked the door and crept back upstairs and Alf came in!

On Sat I went to Lucy's AYME meet-up. To get there my parents drove me to a train station about 30mins away. I then got the train to Lucy's town, which took 40mins, where I met up with 2 other people and we shared a taxi to Lucy's house. There were 14 people (more than I expected) at the meet-up, so I became very shy and didn't talk much. I was very annoyed and upset at myself afterwards for that. No-one swapped seats either, so I didn't get chance to talk to some of the people I wanted to and one girl I was looking forward to seeing wasn't able to make it. I was quite tired while I was there, but I wasn't too bad. I'd not given my cat allergy a thought, but my eyes soon started watering thanks to Lucy's 4 cats! One part of the conversation that I found really funny was when some people started talking about blood tests. They'd clearly only ever had a couple of bloods tests because they were talking about cannulas blocking and needles missing veins like really unusual, traumatic events! I've experienced too many of them to count! I was quite tired when I got home, but felt ok the next day.

Yesterday morn some spare Glasto tickets went on sale. Dad had managed to get his and Alf's when they originally went on sale, but he'd not managed to get mum one. Luckily he got her one yesterday morning though. So at the end of June my parents and Alf will be going away to Glasto, which means I'll be at home alone for 6 days! That's exciting but a bit scary! If my health was better I might think about going to Glasto, but I'm not well enough to this year and to be honest I'm not too fussed about missing it - the yukky toilets, lack of showers and mud don't really appeal to me. So while the rest of my family are there in the mud I'll be watching the BBC coverage of it at home all cosy on the sofa :)

Yesterday morn we went to the local carboot sale again. It was much better than it's been for a while and I came home with loads. I bought a 500 piece dolphins jigsaw for 50p, a PS2 game (21 Card Games) for £1, a PS1 game (Harry Potter and the Chamber of Secrets) for 50p and 14 DVDs, all for £1 each! :D I bought 3 DVDs I've already seen - The Breakfast Club, Music and Lyrics and Rachel Getting Married. I bought 11 DVDs I've not seen before - The Pelican Brief, Brokeback Mountain, Clueless, Signs, The Blair Witch Project, Shakespeare in Love, iRobot, Becoming Jane, The Heartbreak Kid, P.S. I Love You and The Notebook. Mum bought the version of Pride and Prejudice featuring Colin Firth on DVD, some bits and pieces for herself and a book for me about films called Cinematherapy - The Girl's Guide to Movies for Every Mood, which was published in 1999, but still looks like I'll be able to get some DVD suggestions from it.

Yesterday afternoon we went to see my Nan but only stayed for about an hour and a half because dad wanted to get back to watch the football. Yesterday evening mum was listening to her iPod and was singing and dancing to Mika around the house and in the garden, but of course she was the only one who could hear the music! :P

Today my mum has gone to the library in the city to talk to an audience there about her knitting group to inspire them to set up their own. Mum wanted to take loads with her to show the people who come to her talk - her giant needles, lots of different types of yarn, lots of her knitted projects, a cushion she's just knitted etc - she'll be disappointed if only a few people turned up! She didn't have to carry her stuff too far as dad dropped her off as close to the library as he could, just outside the shopping centre that it's situated in, so she only had to walk through the shopping centre and up an escalator. To prevent her having to carry too many bags she put lots of stuff into a backpack. And she's got her giant needles in a fishing rod case. But she looks like a terrorist! Her backpack is one of the camouflage coloured Glasto ones and it's really big in comparison to my mum and the knitting needles in their case look rifle shaped! :P We were worried she might get arrested, but I've spoken to her on the phone and the shopping centre was very empty when she walked through it just before 9am this morning, so there was nobody there to get suspicious.

Last week dad heard that a local bike shop might have a vacancy so after much nagging Alf wrote them a letter to express his interest. Today my dad noticed that Alf had mistyped our phone number in the letter, so Alf phoned them to correct it. I've only been out to the surgery and local shop today. I've been relaxing this afternoon and don't have any plans for this evening. While I was writing this I had to go downstairs to ask Alf to turn his music down as even with my door closed I could hear it and it's horrible! So now he's very grumpy :P

On Wed there was an interesting piece on the local news about what the different political parties want to do about disability benefits. There was a disabled lady asking representatives from the different parties questions about how things will change for her if they get into power. This will be the first election I've been able to vote in, but rather than just copying my parents I wanted to know a bit about what the different parties believe and how their plans differ. However I struggled to find anything on the Internet that told me this in a way I could understand. A couple of days ago someone told me about a guide on the Telegraph website which helps you to find out how the different parties policies match your views. I didn't understand all of the questions in the guide, but I answered as many as I could. It said my views matched the Green Party 75% and matched Lib Dems 69%. My views least matched the Tories, but I didn't bother to include the BNP in my comparison. My parents vote Lib Dem and after looking at their policies in the guide I think I probably will too. The Telegraph guide is definitely worth having a look at, you can find it here.

I've not watched much on TV since my last update. When a programme name is displayed as a link on my blog, that link will take you to the place to watch it online if you're interested. I've watched Embarrassing Bodies: Charlotte's Story, the first episode of series 3 of Outnumbered (which was brilliant) and the second episode of series 3 of Ashes to Ashes twice :) I had to record Dr Who from Sat because I was out, but hope to watch it soon.

One of the DVDs I'm currently renting is the first series of the Catherine Tate Show, so I've watched the first 2 episodes of that. I've not decided what I think of it yet, but am going to persevere. Some of the sketches are funny, but some aren't.

As well as re-watching Coraline on DVD (which I love), I've also watched Sex and the City (which was better than I expected it to be), Little Women (the 1994 version with Winona Ryder, which was very good) and How to Lose a Guy in 10 Days (a predictable but funny romcom). I also attempted to watch The Pelican Brief, but wasn't able to follow it so I'll have to try it again when my brain is working a bit better.

On Tue night I listened to Taylor Swift through my pillow speaker, but it didn't help me sleep. On Wed I listened to some music from a CD called Temple in the Forest and I fell asleep while listening to that :) I discovered it when I was in hospital after my transplant and it helped me to relax then. A girl I know though AYME is very musical and she's recently released some of her music which is available to buy on iTunes or through Amazon. I'm not sure about her style myself but she is very talented so please have a listen for free on her MySpace page here. A few days ago I discovered that Marina and the Diamonds is performing at a festival that's just down the road from me this summer. I'm not well enough to go, but it's frustrating that she's coming so close yet I'm not going to be able to see her :( I couldn't see her on tour either because all the gigs were standing only. I think I might write to Marina and ask her to include some seated gigs in her next tour ;) Ellie Goulding's latest video has just been uploaded to Youtube today. The song is called Guns and Horses and will be released next month. You can see the video here.

I've also done some crosswords with my mum and some Sudoku.

Long update part 1

Sorry that I've not managed to update my blog for a little while. The update I've written is too long to post as one, so I've just split it in half and will publish it as 2 posts. Part 2 will be posted up tonight. So here's part 1...

My health has been quite up and down since my last update. I'm used to good weeks and bad weeks or good days and bad days, but this week I seem to have been going between feeling great and feeling awful within the same day. I'm finding this really frustrating, at least if I used to wake up feeling good I'd know I'd feel like that all day, but now I don't even know that. It's making it very hard to plan anything too. When I say I feel awful I often have a headache and/or a tummy ache and feel exhausted, just too tired to do anything. Last Mon morn I felt awful, I was worried about a few different things, I felt down and completely exhausted. I felt better that afternoon though after going back to sleep for an hour and a half. Tue was generally a good day but I became very exhausted at one point. This Sat just gone I felt ok in the morning, completely exhausted in the afternoon (which resting in bed for an hour listening to music didn't help at all) and fantastic in the evening! The rest of the days have been more stable though.

My tummy pains have been very bad some days, so I don't think the Amitriptyline is working. I tried the Spasmonal first for one week and then the Amitriptyline for a fortnight. A couple of days ago I started back on the Spasmonal again but am going to continue the Amitriptyline and see if taking them both together helps. Hopefully it will.

My nocturnalism seems to have been as bad as ever despite the Amitriptyline, I've had a few earlier nights but the late nights have been 3am ish. My younger brother Alf has stayed up through the night twice this week. This isn't when he goes out, this is when he's at home, but he just doesn't sleep all night. Think it's because he's bored and it seems a good idea to a teenage boy! His sleep pattern is now even more messed up than mine!

My weight last Tue was down a little bit from 53.3kg to 53.0kg, but that small decrease is nothing to worry about. I forgot to weigh myself this morning to email my weight to my dieticians, so I'll do that tomorrow morning instead.

My Hosp B consultant said at my joint clinic last month that my bloods can go back to 3 monthly now as all of the previous results were within the normal range. That means my next blood tests should be in June. However a couple of weeks before my last set of bloods were taken (at the start of March), my Tac dose was lowered from 2mg twice a day to 1.5mg twice a day because my last Tac level had been 13. My normal range is 5 to 8, so luckily when my bloods were last done my Tac level was about 5. However because it dropped from 13 to 5 in just a couple of weeks on the new dosage I'm worried that since then it could potentially have dropped more (making it too low) and that wouldn't be picked up til June. So I've decided I'm going to take some blood via a fingerprick this week (probably tomorrow) and post it to Hosp B for them to process for my Tac level.

Rachy is still making good progress since her transplant. You can keep up to date with her news here.

Recently there has been an announcement about a slight change in the way organ donation will now work in the UK. You can read more about it here, but put simply it means that under some rare circumstances organ donors or their families will be able to request to donate organs to loved ones. I was quite against this change when I first heard about it, but Emily wrote a great explanation of it which has reassured me:

"For those concerned about requested allocation...

Here's what the announcement means as far as I understand it:

Scenario: a woman dies in a car-crash. Her daughter is in need of a new liver. Previously, this would have absolutely no bearing on the organ allocation, despite the obvious wishes of the deceased being to save her daughter, as well as it being of psychological benefit for the donor family.

What has happened is that they have created a clause to allow medical professionals to acknowledge this exceptional circumstance. It's extremely rare, but similar scenarios have happened. It is not a change in the system, it is to legally allow some flexibility in highly specific cases.

Sally Johnston says: "This guidance will enable us to consider, as we always do, what the donor wanted but also to take into account the health and wellbeing of a sick patient who is known to them."

It is another minor adjustment in the laws surrounding organ donation to try and acknowledge the complexity and individuality of each and every case.

I hope that makes more sense - I was somewhat alarmed when the journalist first explained it to me but on reading what it actually entails I don't see any problem with it."

On Sat (27th March), me and mum went to the cinema to see The Blind Side. I think maybe I'd been expecting too much from the film after Sandra Bullock won an Oscar for her performance in it, but it was a very good film, if a little long. It's quite an American film, I didn't understand the American football stuff at all, but luckily that didn't seem to matter too much. Some of the lines were very funny too and made me and mum laugh.

On Sun (28th March) me and mum went to browse round the local weekly carboot sale. It was better than the previous week, but wasn't great. I did get some bargains though - a PS2 game (Harry Potter Quidditch World Cup - to convert Claire, who loves HP, into a PS fan because she currently hates them due to her ex spending more time playing on his PS than with her), 2 PS1 games (Tomb Raider and Spyro Year of the Dragon) and 3 DVDs (Sliding Doors, the first Pirates of the Caribbean film and Mickey Blue Eyes) totalled me just £5.20 :D I spotted one of the stalls that I'd previously bought a wrong region DVD from, but I didn't have it with me to ask to swap.

That evening Claire and her mum came round because they'd not made it round the previous Friday. They could only stay for a couple of hours before Claire's mum had to head home, but it was really nice to meet her for the first time.

Last Tue (29th March) I only went out to the local shop to buy a Radio Times. That afternoon I really enjoyed chatting to Lou on MSN and my older brother Chris popped round briefly to borrow my USB memory stick

On Wed me and mum had been planning to go out to a local city, but after seeing that the weather forecast predicted low temperatures and rain we decided to go to the other nearby city instead because it has an indoor shopping centre where we could shelter. We thought we might go on the train but ended up going in the car instead. While we were out we stopped at W H Smiths for drinks and to eat our lunch, but I was told off for eating my own sandwiches in there! My tummy was very painful while we were wandering round the shops :( I bought a Meryl Streep DVD called First Do No Harm in a charity shop for just 25p - bargain! I also bought a pillow speaker from Maplins to replace my pathetic pillow speaker. The new one is much better - to hear the music from my old one I had to put my ear in a specific position on the pillow, but with my new one I can hear the music when my head is anywhere on the pillow :) You can see it here (and it does work with an iPod). The only other thing I bought was 2 copies of the Pick Me Up Spring Special. This isn't a magazine I'd usually buy, but Holly S has her story in it (and it's not completely over the top like stories in these magazines usually are)! I'm in one of the photos she's included :) If you can find a copy in a shop, Holly's article is on page 57. At the end of the day my heels were sore and I was quite tired, but I had a lovely time. The other day my dad picked me up some memory foam shoe inserts, so I'm going to try them for my heels. My dad also got me a lockable cash tin this week (he had it at work, but it wasn't being used), so I can safely lock my money away again.

Thur was April Fool's Day. Two of the best April Fools I found on the Internet were Google's which can be seen here and the Guardian's which can be seen here.

On Thur I went to Barnardo's in town. On the way I called in at a games shop and traded in 3 out of 5 of my unwanted PS2 games (they didn't want 2 of them) for £8 in-store credit and bought some very pretty reduced greetings cards in Oxfam. I got to Barnardo's for 11am like I'd said and was met by the manager who I gave in my application form to. Firstly I was shown how to steam the clothes and left to steam a rail of clothes. Then the manager went through all the health and safety stuff with me before showing me how to hang the clothes (which hangers to use for which clothes and where to find the cubes with the sizes on to put on the hangers...) and I then hung lots of clothes. It was ok, but a bit monotonous. And it was tiring because it was a new environment and I was on my feet for the whole time (just over an hour). I did have a little accident when I tipped a box of a few hundred little black size cubes off the surface and all over a pile of clothes on the floor. So when my mum came to collect me (because I was very tired) I was on my hands and knees trying to pick all these little cubes up! :P Apparently I wasn't the first to do that though, hehe. All the other volunteers were really nice and the girl out the front looked about my age so I'm hoping to chat to her a bit more next time I see her.

On Fri me and my mum went to visit my Nan. She's lovely but hard work! After having her current TV for 2 years she'd just discovered that it has built-in Freeview so she asked me to teach her how to use that and I also showed her how to access the radio channels on that. Then I taught her to use her DVD player/recorder to play DVDs and CDs. While I was doing this she wanted to know what every button on each remote did! She also asked me to teach her how to record on her DVD recorder, but I said that would have to wait til next time! I'm not sure how much she'll remember but I did write some key points down, so hopefully that'll help her. When I was writing the notes my hand went very shaky (I suspect that was because of my Tac or maybe just because I was tired), so I hope she can read them ok. I also showed my Nan my iPod (Classic) because she'd never seen an MP3 player before. She couldn't understand how the sound quality on it would be any good, so I said she could have a listen. When I offered her the earphones she had no idea how to fit them in her ears because she'd never used them before! Once we got it sorted she loved listening to my iPod. I played Love Story by Taylor Swift on it and her feet were tapping along and she was shouting excitedly to us :D

Very excitingly, Fri night marked the return of Ashes to Ashes. I've watched both series of Life on Mars and both previous series of Ashes to Ashes and have them all on DVD. I think Life on Mars and Ashes to Ashes are definitely my favourite TV programmes ever. I can't decide which I like best though - I liked the freshness and originality of Life on Mars but I really like that the main character in Ashes to Ashes is female. I'd been eagerly anticipating the first episode of series 3 (the final series) of Ashes to Ashes on Fri and luckily it didn't disappoint, I thought it was a great episode and a very strong start to the series. If you've not yet watched it but would like to, you can see it on iPlayer here. Now don't read any further if you're a fan and haven't yet seen the first episode because the remainder of this paragraph will contain spoilers. Episode 1 raised lots more questions, my parents were completely baffled. Hopefully things will become clearer as the series progresses but I know yet more questions will be raised before we get answers. I can't wait to find out more about where the series is going to go and how Sam Tyler is going to fit into it. I think in that episode they were trying to make us think that Gene killed Sam, but I'm sure he wouldn't have done. I suspect he knows more about Sam's death though. I also wonder if maybe Sam isn't really dead, because his body was never found. Who knows! I'm not sure how the man that kept appearing to Alex was, that wasn't Sam. I assume that was the body that was discovered on the TV too but I'm not sure where that fits yet. Maybe Gene killed him. I was really disappointed that Chris and Shaz had split up :( From the clip of next week's episode it looks like Shaz is going to leave, I really hope not. I loved the use of music again, Sweet Dreams when the Quattro was unveiled was great. And the lines seem to be as sharp and funny as ever, I loved Gene's suggestion to Ray about hazelnuts and squirrels, hehe.

Continued here.