Yesterday I received an appt to see my gynaecologist through the post for a Tue in Dec. Unfortunately it's a date my mum is going to give a knitting talk at another library so to attend that appt I'd either have to get a lift there and back from dad when he went to work, so spend all day at the hosp/in the city, or come home on the buses which isn't simple. Due to having no idea how I'll feel on that day I decided to try to rearrange it to a time when mum will be able to take me. I was worried I'd have to wait a lot longer because my gynaecologist is often very busy, but I've got an appt for less than a fortnight later on a date my mum isn't working. It is the day before Christmas Eve though.
At my last clinic appt I mentioned to my consultant that I had an uncomfortable bulge in the side of my abdomen when I lay down. It's not a hernia but it is a weakening of the muscles in my abdomen as a result of all my operations. I can't do anything about it though. Luckily it's not causing me any problems at the moment but sometimes it's quite uncomfortable.
I was struggling with dizzy spells when I wrote my last update. They got a lot better but I've had a few spells of them since then. I thought things had settled down til yesterday when they returned again.
Since I've put on the last couple of kilograms of weight I've developed stretch marks on my legs. When I mentioned this to my consultant he said that I'm more prone to them because I'm on steroids.
I've been having lots of coldsores recently. I wondered if they were being triggered by the sun but they don't seem to be because they come up even when I've not been out in the sun. I hate them, grrr.
I've had my ears pierced since I was about 10 and have always been very lucky in that I've been able to wear any earrings. But recently I seem to have developed an allergy to cheap earrings. It's nothing major in the grand scheme of things but it is frustrating because I have lots of earrings that aren't gold or silver.
I found that my skin was very itchy last month ago and I couldn't work out why. It turned out that mum had changed the soap and I must have reacted to it. So swapping back to our normal soap solved the problem :)
In May I received the dreaded DLA renewal forms in the post, eek! They were last filled out quite soon after my transplant so quite a lot had changed since then - I'd recovered from the transplant but had developed ME. Dad used to fill my DLA forms in for me, but this time I did it myself, with some assistance from dad. I did it online in June and didn't find it too stressful. I heard the result in July - my care rate had dropped from higher rate to lower rate. I think that was a fair outcome, but that now means I'm adjusting to quite a drop in income. And I was very relieved I didn't have to have a medical assessment.
We were able to have our loft properly insulated last month for free because I receive DLA, so that should enable us to save some money on our heating.
I've recently set myself up a second bank account which will be better for saving money as it's got a higher interest rate than my original account.
I also renewed my CEA card earlier in the year.
I think I'd stopped volunteering at Barnardo's last time I updated, but I can't remember. Anyway I quit that because none of the other volunteers spoke to me so I found it very lonely work. I intended to find another volunteering job (like my Pathways to Work advisor encouraged me to) but haven't done that yet. Although I do do some voluntary work for AYME - I write (although not as regularly as I should) to a girl who is severely affected by ME, I provide feedback on each issue of AYME's bi-monthly magazine and I am the local contact for my county (so I put young people within my county in touch with each other and hope to organise a local meet-up soon). I did apply for a postion as a moderator on the AYME forums in the summer, but I didn't get the job. I suspect it may have been because I've not been on the forums very long - it's just over a year now but it was less than a year when I applied for this position a few months ago. My Pathway to Work advisor was made redundant so I won't be seeing her any more.
As I just mentioned, I've been a member of AYME for just over a year now. They are a fantastic charity which provides lots of support for young people aged under 26 who suffer from ME. I've found their forums invaluable as through them I've met lots of people who understand what I'm going through and I've made some great friends :)
My focus and concentration (which are affected by my ME) haven't changed significantly but I did manage to read some short stories and even a whole novel in the summer :D I'm still struggling to read though and I've not read any novels since that one as it just takes too much effort to make it enjoyable. Although having said that, a novel by an author I like came into the library recently so I think I'll give that a try. I can still manage to watch films and TV when I'm not too exhausted, but I think I'll talk about that more in another update.
I've recently made a new friend with ME. I've got lots of online friends, but Rebecca lives in the same village as me. She met mum through using the library a lot and then mum introduced her to me. We've only met up a couple of times so far but we got on really well (despite her being quite a bit older than me) and I'm looking forward to seeing her more :)
In July it was my 2 year ME anniversary. And back in May it was my 3 and a half year transplant anniversary, next month it'll be 4 years. I've not been in touch with my donor's sisters for a while so I need to get back in touch with them soon.
I recently heard from the chair of a fantastic charity called PINNT which supports people on enteral and IV feeding. I used to be quite involved with this support group when I was younger but obviously since my transplant I've become a bit more distant from them because I'm no longer on TPN. I did go to the meet-up in my county earlier in the year though. I know C, the chair, very well, so it was lovely to get an email from her. She asked about how I was and then asked if I'd like to give a presentation about being on TPN and then the decision to have a transplant and the PINNT weekend next year. So of course I said yes :) Mum or dad will talk too and maybe my consultant from Hosp A. I've got a further email since then with a few more details. C has asked me to talk for about 20mins which is a very long time, but hopefully if I can include a question and answer session then that should be fine. C thinks it'll be a very thought provoking session and I'm hoping that as well as getting people thinking (and hopefully signing up to the organ donor register), it will also reassure people who may need a small bowel transplant in the future.
On May 19th I gave a talk about organ donation to a group of teenagers. I was very nervous beforehand because although I'd spoken to hundreds of adults before I'd never given a talk to teenagers. However it went really well and I got them all talking about organ donation and a couple even filled out the forms there and then. One girl misunderstood what I was asking of her and thought that I wanted her to donate her organs while she was still alive. Despite that she still filled out the form.
Please don't forget to spread the word about organ donation by sharing the video I posted here to help to prevent unnecessary deaths like Kennedy's.
Showing posts with label organ donation. Show all posts
Showing posts with label organ donation. Show all posts
Monday, 11 October 2010
Thursday, 7 October 2010
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
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
Monday, 13 September 2010
Sad news
You may have seen the link I posted to the Transplant Kids 2010 slideshow last week. If you missed it you can view it here. The little girl Kennedy who is featured in that is the K I've referred to in my blog before. Tragically she died this morning as she didn't receive her second transplant in time. She was only 6 years old. Everyone who knew Kennedy is devastated at the news as she was an inspirational girl who will never be forgotten - I'll always remember her cheekiness, sense of humour, beautiful smile, spirit, strength and determination. Always loved and never forgotten.
Kennedy wouldn't have died if there were more people on the organ donor register. To prevent more children and adults dying unnecessarily please sign the organ donor register here. Talk to your family and friends about loved ones and feel free to repost or email the Transplant Kids 2010 slideshow around to raise awareness.
Kennedy wouldn't have died if there were more people on the organ donor register. To prevent more children and adults dying unnecessarily please sign the organ donor register here. Talk to your family and friends about loved ones and feel free to repost or email the Transplant Kids 2010 slideshow around to raise awareness.
Thursday, 9 September 2010
Transplant Kids 2010
Sorry I've not blogged in a while. I'll try to get blogging properly again soon, but today I just wanted to make a little post for something very important. My friend Cat has created a fantastic slideshow to promote organ donation. Please watch it here and then share it. And don't forget to look out for me in it :) Thank you.
Sunday, 4 July 2010
National Transplant Week 2010
Today marks the start of National Transplant Week 2010. Rather than writing a post about it, I'm going to direct you to a great blog that Live Life Then Give Life have written. Please click here. And I've just seen that Rachy has written a blog dispelling some common myths about organ donation which you can read here.
Tuesday, 15 June 2010
Organ donation in the news again
Over the last couple of days there has been a story in the news about a woman who received lungs from a donor who had smoked and then she died a few months later. You can see this story on the BBC news website here. My friend Emily has written a brilliant blog post in response to this story which you can read here. It's well worth a read.
Tor was on the radio today talking about that story too. You can listen online here. The talk about organ donation is at 1 hour 10mins in and Tor speaks from 1 hour 13mins in.
Tor was on the radio today talking about that story too. You can listen online here. The talk about organ donation is at 1 hour 10mins in and Tor speaks from 1 hour 13mins in.
Friday, 14 May 2010
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
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
Monday, 10 May 2010
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
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
Wednesday, 5 May 2010
Getting up to date with April - part 6 (more day to day stuff)
On Tue 27th April I didn't do much. I did pop out to the local shop though to buy the latest Radio Times and in the evening I helped Alf cash the IOU I'd given him for his birthday at the start of month. He didn't have an iPod charger of his own so kept borrowing mine. If I let him take it out my room he'd forget to give it back so I then told him that he had to use mine in my bedroom. That wasn't ideal though so for his birthday I gave him an IOU for an iPod charger of his own up to the value of £10. The official charger in the local Apple shop cost an astonishing £37, but Alf found one on Amazon that looked fine but wasn't branded for just under £5 (including P&P) so I bought that for him on Tue. When the charger arrived on Fri I was a bit nervous that it might not be compatible with Alf's own iPod Mini or might not work, but it worked fine :)
On the morn of Wed 28th April I popped round to the surgery to collect my new suncream. It's only factor 30 (my previous one that I reacted to was factor 50), but I guess that'll do. It's a huge heavy tube, so I wont want to carry it around with me when I'm out, but it'll be fine to put on at home or in the car before I go out. After that I phoned Barnardo's and talked to the deputy manager again. She said that they would have some work for me to do that day so I agreed to go in after lunch.
As we were heading out I got bad stomach pains but decided to go anyway and see how they were when I got to Barnardo's. They were still quite bad when I got there but I decided to start volunteering and I could always finish early if I was in too much pain. I volunteered for an hour and my tummy was very painful for the first half hour :( But fine for the second half hour :) It was much quieter than the previous time I'd been in and I liked that. However some furniture had been moved around in the back room so I had even less room to move! The only other volunteer in was the deputy manager and she was quite grumpy so I didn't manage to get into conversation with her. It was nice that the clothes I had to hang up were folded and piled on the floor rather than just thrown in a heap.
I then met up with mum and we went for drinks in a cafe in town. After that we looked in a few charity shops where I picked up an Agatha Christie short story book, a 4 DVD set of 80s films (containing Pretty in Pink, Ferris Bueller's Day Off, Some Kind of Wonderful and Planes Trains and Automobiles) and a CD of rainforest sounds which I thought I might be able to listen to when trying to get to sleep at night. When I was in hospital for my transplant I found a CD called Temple in the Forest on the ward, which contained relaxing music that sounded like a forest. That helped me to relax and get to sleep but when I listen to it now it brings back memories of hosp which doesn't help to relax me. So I was pleased to find a CD that looked similar that I thought I might be able to listen to instead. However when I tried it out I discovered that it wasn't music, it was just rainforest sounds. I didn't find it very relaxing to listen to as there was an annoying background chirping sound constantly and then every so often there'd be another animal noise over the top of that which would make me jump! Then me and mum did a supermarket shop before heading home.
On Wed eve Claire came round. We had a lovely evening chatting, having tea, playing on the Wii and watching a film together. A few months ago Claire had asked me about giving a talk on organ donation to some of the students she teaches. She works at a unit which teaches children who can't attend school for behavioural or medical reasons - I met her when she taught me when I was too ill to go to school before my transplant. I'd said I'd get back to her about it but it was just one of those things I'd not managed to get round to. So on Wed I asked Claire if there was still time for me to do this before the end of term. Claire said that'd be great so we decided on a date - Wed 19th May. I'll be speaking to up to twelve GCSE year students, so they'll be about 16. Before then I need to look through the organ donation resources I've got and check I've got enough leaflets, fluffy bugs etc and I also need to plan my talk. I'm confident giving talks to adults, but teenagers seem quite a bit more daunting. And then of course I have no idea how well I'll be on the day. But it'll be great if I can do it to raise awareness of organ donation :)
On Thur 29th April I slept through my alarm (which always goes off at 10.30am so I can get up in time to take my morn Tac 12 hours after my eve Tac) and didn't wake up til 11.40am! Whoops. That put me out of sync for the whole day :P In the post I received some raffle tickets to sell to raise money for AYME and a very cute sock monster that I'd ordered from Lou's Folksy Shop (you can also see Lou's blog here). That morn I wrapped and parcelled up Rosie's birthday presents before taking the parcel round to the post office to send off to make sure it reached Rosie in time for her 18th birthday tomorrow. I was very surprised that she actually received it just 2 days later (I sent it 2nd class)! I also wrote and posted a long overdue letter to Kate - my AYME buddy.
I had a lovely evening watching a film with my mum. Then I got a bit frustrated because Facebook was playing up, but luckily it got sorted out within a couple of hours. Me and mum discussed the possibility of going on a family holiday to Center Parcs later in the year, but she's not mentioned this to dad yet, so it's only a dream at the moment. I'll let you know if it progresses any further.
Thur was one of those days where I realised how fantastic some of my friends are. I got a lovely PM from Rosie as I do every day, when I asked Lou if I could buy another sock monster from her for Mia's 4th birthday she said that she was happy to send her one for free, I received 2 very understanding responses from Michelle and J (who I met at the PINNT meet-up) when I sent them both a brief email to them to let them know that it might take me a few days to reply to their emails and I also received a lovely eCard from Michelle :)
On the morn of Fri 30th April me and mum headed out to a local garden centre that also sells books, clothes, pets, crafts and food for a browse round. We had some drinks in the cafe there and I saw a cute ferret in the pets section. Mum bought some plants for the garden and we bought a new house card for nan in preparation for her move the following day.
After that we headed into town to wander round the shops and do a supermarket shop. When I say town I mean one of our two local towns, we don't go into the same town each time :P I bought a Some Like it Hot DVD in Cash Converters and a deodorant. I also picked up a free local magazine in a charity shop because it included an interview with Marina and the Diamonds. Mum rarely buys DVDs and if she does she buys cheap ones (either reduced or second hand), but that day she bought Avatar on DVD! Mum saw it at the cinema with Alf so she was keen to see it again and for me to watch it too. We've not seen it yet though. We ate our lunch as we were walking round. While we were in Sainsburys I spotted a funny sign on the box of a Wii game which said "Warning! This product contains a security tag which is NOT MICROWAVABLE" I'm not sure why anyone would try to microwave a Wii game! :P Mum said that apparently some security tags can be removed by microwaving the product which might explain that label, but I still thought it was funny.
That eve Chris and Sophie popped round again.
On Sat 1st May my nan moved to another flat in her building. The flat she moved to is more spacious and lighter (due to more windows) than her old flat. Dad and Alf went to help out with her move in the morn and were joined by my uncle Danny and his wife Diane. Mum was at work in the morn and I stayed at home because I wasn't feeling too well but we went to join them after lunch. I didn't feel v well while we were there so wasn't of much help but it was nice to see my nan and my uncle and aunt. The move went smoothly :) I was made official photographer, but because everyone was busy it was difficult to get good photos. I had a go though so thought I'd share a few with you :)
Dad busy at work
Dad showing off the dancing he's practising for Glastonbury, eek!
Alf not very impressed that I'd taken a photo of him!
My aunt Diane with my mum
My nan
To be continued...
On the morn of Wed 28th April I popped round to the surgery to collect my new suncream. It's only factor 30 (my previous one that I reacted to was factor 50), but I guess that'll do. It's a huge heavy tube, so I wont want to carry it around with me when I'm out, but it'll be fine to put on at home or in the car before I go out. After that I phoned Barnardo's and talked to the deputy manager again. She said that they would have some work for me to do that day so I agreed to go in after lunch.
As we were heading out I got bad stomach pains but decided to go anyway and see how they were when I got to Barnardo's. They were still quite bad when I got there but I decided to start volunteering and I could always finish early if I was in too much pain. I volunteered for an hour and my tummy was very painful for the first half hour :( But fine for the second half hour :) It was much quieter than the previous time I'd been in and I liked that. However some furniture had been moved around in the back room so I had even less room to move! The only other volunteer in was the deputy manager and she was quite grumpy so I didn't manage to get into conversation with her. It was nice that the clothes I had to hang up were folded and piled on the floor rather than just thrown in a heap.
I then met up with mum and we went for drinks in a cafe in town. After that we looked in a few charity shops where I picked up an Agatha Christie short story book, a 4 DVD set of 80s films (containing Pretty in Pink, Ferris Bueller's Day Off, Some Kind of Wonderful and Planes Trains and Automobiles) and a CD of rainforest sounds which I thought I might be able to listen to when trying to get to sleep at night. When I was in hospital for my transplant I found a CD called Temple in the Forest on the ward, which contained relaxing music that sounded like a forest. That helped me to relax and get to sleep but when I listen to it now it brings back memories of hosp which doesn't help to relax me. So I was pleased to find a CD that looked similar that I thought I might be able to listen to instead. However when I tried it out I discovered that it wasn't music, it was just rainforest sounds. I didn't find it very relaxing to listen to as there was an annoying background chirping sound constantly and then every so often there'd be another animal noise over the top of that which would make me jump! Then me and mum did a supermarket shop before heading home.
On Wed eve Claire came round. We had a lovely evening chatting, having tea, playing on the Wii and watching a film together. A few months ago Claire had asked me about giving a talk on organ donation to some of the students she teaches. She works at a unit which teaches children who can't attend school for behavioural or medical reasons - I met her when she taught me when I was too ill to go to school before my transplant. I'd said I'd get back to her about it but it was just one of those things I'd not managed to get round to. So on Wed I asked Claire if there was still time for me to do this before the end of term. Claire said that'd be great so we decided on a date - Wed 19th May. I'll be speaking to up to twelve GCSE year students, so they'll be about 16. Before then I need to look through the organ donation resources I've got and check I've got enough leaflets, fluffy bugs etc and I also need to plan my talk. I'm confident giving talks to adults, but teenagers seem quite a bit more daunting. And then of course I have no idea how well I'll be on the day. But it'll be great if I can do it to raise awareness of organ donation :)
On Thur 29th April I slept through my alarm (which always goes off at 10.30am so I can get up in time to take my morn Tac 12 hours after my eve Tac) and didn't wake up til 11.40am! Whoops. That put me out of sync for the whole day :P In the post I received some raffle tickets to sell to raise money for AYME and a very cute sock monster that I'd ordered from Lou's Folksy Shop (you can also see Lou's blog here). That morn I wrapped and parcelled up Rosie's birthday presents before taking the parcel round to the post office to send off to make sure it reached Rosie in time for her 18th birthday tomorrow. I was very surprised that she actually received it just 2 days later (I sent it 2nd class)! I also wrote and posted a long overdue letter to Kate - my AYME buddy.
I had a lovely evening watching a film with my mum. Then I got a bit frustrated because Facebook was playing up, but luckily it got sorted out within a couple of hours. Me and mum discussed the possibility of going on a family holiday to Center Parcs later in the year, but she's not mentioned this to dad yet, so it's only a dream at the moment. I'll let you know if it progresses any further.
Thur was one of those days where I realised how fantastic some of my friends are. I got a lovely PM from Rosie as I do every day, when I asked Lou if I could buy another sock monster from her for Mia's 4th birthday she said that she was happy to send her one for free, I received 2 very understanding responses from Michelle and J (who I met at the PINNT meet-up) when I sent them both a brief email to them to let them know that it might take me a few days to reply to their emails and I also received a lovely eCard from Michelle :)
On the morn of Fri 30th April me and mum headed out to a local garden centre that also sells books, clothes, pets, crafts and food for a browse round. We had some drinks in the cafe there and I saw a cute ferret in the pets section. Mum bought some plants for the garden and we bought a new house card for nan in preparation for her move the following day.
After that we headed into town to wander round the shops and do a supermarket shop. When I say town I mean one of our two local towns, we don't go into the same town each time :P I bought a Some Like it Hot DVD in Cash Converters and a deodorant. I also picked up a free local magazine in a charity shop because it included an interview with Marina and the Diamonds. Mum rarely buys DVDs and if she does she buys cheap ones (either reduced or second hand), but that day she bought Avatar on DVD! Mum saw it at the cinema with Alf so she was keen to see it again and for me to watch it too. We've not seen it yet though. We ate our lunch as we were walking round. While we were in Sainsburys I spotted a funny sign on the box of a Wii game which said "Warning! This product contains a security tag which is NOT MICROWAVABLE" I'm not sure why anyone would try to microwave a Wii game! :P Mum said that apparently some security tags can be removed by microwaving the product which might explain that label, but I still thought it was funny.
That eve Chris and Sophie popped round again.
On Sat 1st May my nan moved to another flat in her building. The flat she moved to is more spacious and lighter (due to more windows) than her old flat. Dad and Alf went to help out with her move in the morn and were joined by my uncle Danny and his wife Diane. Mum was at work in the morn and I stayed at home because I wasn't feeling too well but we went to join them after lunch. I didn't feel v well while we were there so wasn't of much help but it was nice to see my nan and my uncle and aunt. The move went smoothly :) I was made official photographer, but because everyone was busy it was difficult to get good photos. I had a go though so thought I'd share a few with you :)
My mum looking like a pixie
My uncle Danny
Dad busy at work
Dad showing off the dancing he's practising for Glastonbury, eek!
Alf not very impressed that I'd taken a photo of him!
My aunt Diane with my mum
My nan
Tuesday, 4 May 2010
Holly in the paper
Just a quick post to let you know that my friend Holly C is in the Independent newspaper today :) You can read the article online here or if you pick up a copy of the Independent it's spread over a double page (pg 42 and 43) and includes some more photographs. You can see Holly's health blog here, her photography blog here and her photography website here.
Saturday, 1 May 2010
Getting up to date with April - part 2 (organ donation)
I'm not feeling too well tonight (just exhaustion, a headache and dizziness again), so this probably won't be a very long update. I'm going to get an appt with my GP after the bank holiday if I'm still struggling with dizziness then. I thought that this update could be about organ donation in the news and news on my friends in the transplant community.
Rachy is continuing to make very good progress after her transplant and has now got her trachy out so she can talk again and has left ICU :) You can keep up to date on Rachy's progress on her blog here. Last month Rachy was in her local newspaper which you can see here and had an article on her hospital's website which you can see here.
Following the organ donation story in the news at the start of the month (about people's wishes about which organs they wanted to donate being wrongly recorded), which I blogged about here, Tor went on GMTV to talk about it. You can see the video on her blog here.
Organ donation was in the news again later in the month when the suggestion of donors being paid for organ donation was raised. You can see The Independent's article about it here. I agree that things need to be done to try to increase the numbers on the organ donor register to stop 3 people here in the UK dying every day while waiting for transplants, but don't think this is the way to do it.
I am not a fan of the Daily Mail, but they published a fantastic article a couple of weeks ago about a day in the life of a transplant co-ordinator. You can see it here and it's well worth a read.
My friend Holly was admitted to hospital earlier in the month after feeling unwell and was soon discovered to have pneumonia. Luckily she's back at home and on the mend now though.
K spent a spell in Hosp B recently also with pneumonia. It hit her quite hard and she very unwell for a few days. She's a fighter though and was soon feeling much better. While she was in Hosp B the doctors had a meeting about her to decide what organs she would need to receive in her second transplant. Shortly after K returned home she was relisted for another small bowel and liver transplant. I hope she gets her call soon and that her second transplant goes as smoothly as possible.
Through blogging I recently met a lovely lady called Michelle. She lives in Canada and has had a transplant like mine. If you don't read her blog please pop over and have a look by clicking on her name where it is highlighted just above. We've been emailing each other since and it's great to be able to chat to someone who can relate what I've been through :)
Rachy is continuing to make very good progress after her transplant and has now got her trachy out so she can talk again and has left ICU :) You can keep up to date on Rachy's progress on her blog here. Last month Rachy was in her local newspaper which you can see here and had an article on her hospital's website which you can see here.
Following the organ donation story in the news at the start of the month (about people's wishes about which organs they wanted to donate being wrongly recorded), which I blogged about here, Tor went on GMTV to talk about it. You can see the video on her blog here.
Organ donation was in the news again later in the month when the suggestion of donors being paid for organ donation was raised. You can see The Independent's article about it here. I agree that things need to be done to try to increase the numbers on the organ donor register to stop 3 people here in the UK dying every day while waiting for transplants, but don't think this is the way to do it.
I am not a fan of the Daily Mail, but they published a fantastic article a couple of weeks ago about a day in the life of a transplant co-ordinator. You can see it here and it's well worth a read.
My friend Holly was admitted to hospital earlier in the month after feeling unwell and was soon discovered to have pneumonia. Luckily she's back at home and on the mend now though.
K spent a spell in Hosp B recently also with pneumonia. It hit her quite hard and she very unwell for a few days. She's a fighter though and was soon feeling much better. While she was in Hosp B the doctors had a meeting about her to decide what organs she would need to receive in her second transplant. Shortly after K returned home she was relisted for another small bowel and liver transplant. I hope she gets her call soon and that her second transplant goes as smoothly as possible.
Through blogging I recently met a lovely lady called Michelle. She lives in Canada and has had a transplant like mine. If you don't read her blog please pop over and have a look by clicking on her name where it is highlighted just above. We've been emailing each other since and it's great to be able to chat to someone who can relate what I've been through :)
Monday, 12 April 2010
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.
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.
Tuesday, 6 April 2010
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:
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.
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."
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.
Saturday, 20 March 2010
Good week, PS2 and new Mika song
My good week has continued :) I've been feeling less tired than usual and have had more energy, despite being as nocturnal as ever :P I've still been feeling tired at some points, but overall I've been feeling much better this week than I usually do and have been able to do more. Fingers crossed it lasts.
Yesterday my heels were the most painful they've ever been with the plantar fasciitis. Luckily they're not too bad today.
The Spasmonal tablets that I've been taking before meals since last Fri haven't helped my tummy pains and have given me indigestion a lot. So I stopped taking those yesterday after trying them for a week. I'll be starting Amitriptyline tonight, so hopefully that'll help.
I received a letter this week with an appt for my next clinic at Hosp A on June 7th. At this clinic the plan will be to complete my transition. I've drafted the email I need to send to S about how things currently work at Hosp B, but I've not sent it yet because I'm going to ask dad to read through it and see if he can think of anything to add. And I've emailed my GP, Dr I, to let him know that once my transition is complete my Tacrolimus wont be delivered by the health care company any more but instead I'll need to get it on prescription.
And the extra Tacrolimus that I needed because I was running short was delivered on Wed.
Yesterday would have been Jessica Wales' 21st birthday. I thought of her family and close friends a lot yesterday, I can't imagine how hard the day must have been for them. RIP Jess xxx
There's been some great news on Rachy since my last update. You can read about her progress and see photos here.
Earlier in the week I was given the link to a clip of Victoria Tremlett talking about organ donation on GMTV. You can see it here.
And the second Give And Let Live Photo book that I ordered from Holly C for mum arrived in the post this week.
Holly S' Battlefront programme was repeated on Channel 4 in the early hours of yesterday morning. We have it recorded on our hard disc recorder, but that is dying and I don't want to lose the programme when it does. So my friend Lizzy recorded it onto her hard disc recorder when it was repeated yesterday and is hoping to now burn it to a DVD (she's never done it before, but hopes she'll be able to) for us. It's really frustrating not being able to record things at the moment, I think if I can watch one more programme on the hard disc recorder then I'll try wiping and reformatting it to see if we can get it to work again. If not I'll try to persuade my parents that we need to buy a new one.
My Playstation 2 was due to be delivered yesterday but I wanted to go out. I knew that the parcel would need to be signed for so I asked Alf if he would stay in and sign for it for me. He agreed but I had to pay him £2 the night before, so I did. As it turned out the PS2 was delivered before we went out yest. I eagerly unpacked it but was disappointed to find that although I had the PS2, a memory card, 2 controllers and 10 games, I had no leads to connect the PS2 to my TV or to the mains power. I was worried that the seller was deliberately not going to sell me these so I emailed her to check. While I was waiting for a response Alf contacted a friend who said he had some spare leads I could have, but it might be a few days before he could get them to me. I just wanted to play with my new toy! Later that day I got a response to the email and discovered that the seller had just forgotten to include the leads in the parcel, so she put them in the post to me first class yesterday. I didn't want to have to wait much longer to play on my PS2, but luckily the leads arrived this morn. The PS2 is now set up and working :D I've only tried out one game so far (Sonic Heroes) but have more that I want to try.
10 games came with the PS2 - 2 of which I know I'll enjoy playing (Sonic Heroes and Lord of the Rings: The Return of the King) and 2 of which I might like playing (The Italian Job LA Heist and Splinter Cell). So that leaves 6-8 that I don't want (children's games, racing games and killing games). I'm waiting to hear if Chris and Sophie want to buy any of them off me because Sophie has a PS2. If not I'll check that they all work and then trade them in at a local game shop when I next go to town. I thought about trading them in at GAME but think I might get a better deal for them at a different game shop in the other local town.
As well as the 10 games that came with the PS2 I've also bought some more. I've had a look on the high street but the prices of the pre-owned PS1 and PS2 games vary greatly as does the quality of the discs. All of Cash Converters PS1 discs look too scratched to play but I did buy a PS2 game (Tony Hawk's Project 8) in there. It was £4 though, so a bit more expensive than I think I'm going to like to pay for games. GAME are selling used PS2 games for £5 so I've not bought any from there yet and wont unless I'm sure I'll like them. And when I went to a different town yesterday I bought a PS1 game (Who Wants to be a Millionaire) and PS2 game (SSX 3) in good condition from a charity shop for £1 each, bargain.
I've also bought a PS2 game (Need for Speed Most Wanted) for £2.70 on eBay which should be on it's way to me soon. And I bought a bundle of 2 PS2 games (Rayman Revolution and Rayman 3) plus a PS1 game (Rayman) for just £3.80 this morning but the seller's PayPal isn't working so I've got to try to pay them by postal order instead.
On Tue I only went out briefly to buy the Radio Times from the local shop. My dad has been on annual leave since Wed and he's off next week too. That's really been confusing me because he's usually only around at the weekends, so each day since Wed I've thought it's Sat! He seems to have been enjoying his annual leave so far - he went fishing on Wed, did loads of work in the garden on Thur and went out with me and mum yest. Next week he's looking forward to staying at the fishing resort where his sister and her partner rent a cabin for a few days.
On Wed I went into town while mum gave a talk at the library there about knitting because they're setting up their own knitting group like mum's Knit Lit at our village library. I successfully bought myself a new pair of slippers because my slipper boots were falling apart. When I'd finished my shopping I went for a drink in the library cafe and then surfed the Internet on one of the computers there til my mum had finished.
Then on Wed eve Claire came round for tea and we had fun playing on New Super Mario Bros Wii together. We didn't make any progress though. Later in the evening we went to the local cinema to see The Lovely Bones. I didn't really like it, it was very weird and quite sad. After that Claire came back briefly for a drink. Later that evening I caught up on my emails.
On Thur I had my 3rd Pathways to Work appt. I popped to the shops in town briefly before that. I used to have problems with Alfie helping himself to money from my purse, so I started to lock it away in a lockable box I had. I trust him more now though, so had stopped locking my money away. Dad suggested I restart now we know Alf is smoking again, but when I tried to put my money away I discovered that the lock on my box had broken. So I was looking out for a lockable cash tin in town but the cheapest I could find cost £9 and I thought that was too much. So my money isn't locked away at the moment. As well as the PS2 game from Cash Converters that I've already mentioned, I also bought a t-shirt from Sainsburys.
My Pathways to Work appt went well, my advisor was really pleased that I'd managed to phone the charity shops and was planning to start volunteering at Barnardo's. She suggested I phone them regularly to chase up the application form until I receive it. That appt only took 30mins as it was just updating my records on the computer. And we chatted about nails too because she was surprised to find someone else with long nails like her! Hopefully next month when I see her we'll be able to talk about how my volunteering is going.
Yesterday I went out with my parents. Firstly we headed to Tesco for a very quick shop and mum needed to return 2 items of clothing. They were both in the same bag yet she only remembered to return one! After that we headed to a town about 40mins away because mum had heard that there was a wool shop there. We all went in a few charity shops were we all got some good bargains. Dad bought himself a pair of jeans and as well as getting a PS1 and a PS2 game (mentioned earlier), I also bought a Victoria Wood DVD for my mum and a DVD of comedy clips for us all. The PS1 game, PS2 game and 2 DVDs all came to less than £4! While mum and dad went in the wool shop I went in Blockbuster, but didn't buy anything.
After that we headed to my uncle (dad's brother) and aunt's house. They were the 2 who celebrated their 45th wedding anniversary last month at a local restaurant. They've lived in their current house, about an hour's drive from us, for nearly 5 years now but we'd never visited them before yesterday. So because they live in the same direction as the town with the wool we went to see them. My uncle made us lunch. I'd planned to take sandwiches with me, but had left them at home. Whoops. The curry he made was nice, but a bit spicy for me so I couldn't eat as much as I would have liked to. We spent about 3 hours there in total which involved lots of chatting, trying to help my uncle sort his computer out (but both him and dad ignored my suggestions so that wasn't very successful!), admiring their knitted toilet roll covers (and sending a photo to Claire of course!), helping my aunt send some photos from her phone to their daughter, listening to some of my uncle's 100 year old records, walking round their land and seeing all their animals (2 cats, 4 geese, chickens...), talking about knitting (no surprise with my mum) and looking at their wedding photos from 45 years ago and laughing at the photos of my dad when he was 15. My uncle is the one who made my mum's giant knitting needles, so we took them with us so he could finish them off by gluing the ends in place. It was a nice but long afternoon so I fell asleep in the car on the way home :P
Today I'm home on my own, but I like it :) Alf stayed at a friend's last night, dad has gone out fishing and mum has gone to a knitting show in London with Claire and another of her friends. I phoned her when I got up this morning and she was on the train on the way there. She'd prebooked tickets for the 3 of them as that works out cheaper than buying on the door. But she'd left the tickets at home, so they'd have to buy new tickets once they got there. Whoops! My mum makes me laugh a lot. Last night when she got home from work she told me that she'd asked someone how old you have to be to join the Over Sixties Club, hehe! :P
Tomorrow morn I'm looking forward to browsing round the local carboot sale for bargain PS games and DVDs :D I'm also going to see if I can recognise the 2 stalls where I bought the wrong region DVDs last week and if so I'm going to ask if I can swap them. On Mon I might go into town to try to trade in my unwanted PS2 games and to chase Barnardo's up about the application form. That aft is Alf's parents' eve, so if I feel up to it I'm going to accompany my parents to that because I've not seen Alf's college before so that'll be interesting. On Tue eve I'm hoping to attend the teenage discussion group in the village.
Once again I've not done much reading this week but I did enjoy flicking through the latest issue of Cheers (AYME's bi-monthly magazine) which arrived in the post this week. I've also played on my DSi a bit more but am getting stuck on my current game, Yoshi's Island DS, now.
I discovered a few days ago that Mika sings the theme tune for a new film that is coming out soon called Kick Ass. The film, about Marvel Superheroes, doesn't interest me at all, but it's exciting that Mika sings the theme tune and that it will be released as a single. Some of Mika's singles don't get much publicity but hopefully this will because it's linked to a film and because it's produced by the famous music producer Red One (this song doesn't have the shout-out at the beginning though). You can see it here. I'm not that keen on the video because it's clips of the film interspersed with clips of Mika and I'd much prefer it all to be clips of Mika :P But I understand why they've done it that way. I like Mika with glasses, I think they suit him. I wasn't sure about the song to start with because it sounds much more computerised than his songs usually do, but it still has that distinctive Mika sound. After just one listen it was firmly stuck in my head, it's definitely catchy, and I've decided I like it :)
Since my last update I've watched a couple of films. I rewatched The Incredibles, but didn't enjoy it as much as I remembered I did last time. Hmmm. I also watched a Sandra Bullock film called The Net (and its extra features) which I rented. I loved it and would highly recommend it. It's got a very original plot, is quite a tense thriller and Sandra Bullock is as great as ever. In fact I then bought the DVD from eBay because I knew it was a film that I wanted to share with mum and would want to rewatch. I bought it for just £2. The DVD arrived this morning, just 2 days after I bought it, and is in perfect condition :) And today I found a trailer for Shrek Forever After on the Internet. You can see it here. I've loved all 3 Shrek films so far, but that trailer doesn't excite me. I'm sure I'll be seeing it in the cinema in 3D anyway when it's released this summer and hopefully it'll be as good as the other Shrek films, fingers crossed.
Since my last update I've also watched the first ever episode of Blackadder because I rented the DVD of the first series. I didn't enjoy it as much as I thought I would though, so I've not watched any more episodes and have returned the DVD.
I've not watched much on TV since my last update but do have loads to watch on iPlayer because the hard disc recorder isn't working, grrr. I've watched Sport Relief does Dragons' Den, One Born Every Minute and Sport Relief. I watched Sport Relief in the background while I was doing other stuff, but was waiting for interesting parts. There weren't many. James Corden's sketch as Smithy was the highlight of the programme for me, it was brilliant :D I was looking forward to seeing Annie Lennox perform but would much rather her perform one of her own songs than Bridge Over Troubled Water. And the Ashes to Ashes special didn't live up to my expectations either. They clearly didn't worry about the plot because it was all about spotting the 80s celebs in it. But of course I didn't recognise any of them, but did notice the poor plot. I was very excited to find out the other day that series 3 of Ashes to Ashes is starting on Friday April 2nd at 9pm. I can't wait! I'm a bit disappointed it will be shown on Fridays though as that will mean that mum wont be able to watch every other one live due to Knit Lit. So we need to have some kind of working hard disc recorder by then if not before.
Yesterday my heels were the most painful they've ever been with the plantar fasciitis. Luckily they're not too bad today.
The Spasmonal tablets that I've been taking before meals since last Fri haven't helped my tummy pains and have given me indigestion a lot. So I stopped taking those yesterday after trying them for a week. I'll be starting Amitriptyline tonight, so hopefully that'll help.
I received a letter this week with an appt for my next clinic at Hosp A on June 7th. At this clinic the plan will be to complete my transition. I've drafted the email I need to send to S about how things currently work at Hosp B, but I've not sent it yet because I'm going to ask dad to read through it and see if he can think of anything to add. And I've emailed my GP, Dr I, to let him know that once my transition is complete my Tacrolimus wont be delivered by the health care company any more but instead I'll need to get it on prescription.
And the extra Tacrolimus that I needed because I was running short was delivered on Wed.
Yesterday would have been Jessica Wales' 21st birthday. I thought of her family and close friends a lot yesterday, I can't imagine how hard the day must have been for them. RIP Jess xxx
There's been some great news on Rachy since my last update. You can read about her progress and see photos here.
Earlier in the week I was given the link to a clip of Victoria Tremlett talking about organ donation on GMTV. You can see it here.
And the second Give And Let Live Photo book that I ordered from Holly C for mum arrived in the post this week.
Holly S' Battlefront programme was repeated on Channel 4 in the early hours of yesterday morning. We have it recorded on our hard disc recorder, but that is dying and I don't want to lose the programme when it does. So my friend Lizzy recorded it onto her hard disc recorder when it was repeated yesterday and is hoping to now burn it to a DVD (she's never done it before, but hopes she'll be able to) for us. It's really frustrating not being able to record things at the moment, I think if I can watch one more programme on the hard disc recorder then I'll try wiping and reformatting it to see if we can get it to work again. If not I'll try to persuade my parents that we need to buy a new one.
My Playstation 2 was due to be delivered yesterday but I wanted to go out. I knew that the parcel would need to be signed for so I asked Alf if he would stay in and sign for it for me. He agreed but I had to pay him £2 the night before, so I did. As it turned out the PS2 was delivered before we went out yest. I eagerly unpacked it but was disappointed to find that although I had the PS2, a memory card, 2 controllers and 10 games, I had no leads to connect the PS2 to my TV or to the mains power. I was worried that the seller was deliberately not going to sell me these so I emailed her to check. While I was waiting for a response Alf contacted a friend who said he had some spare leads I could have, but it might be a few days before he could get them to me. I just wanted to play with my new toy! Later that day I got a response to the email and discovered that the seller had just forgotten to include the leads in the parcel, so she put them in the post to me first class yesterday. I didn't want to have to wait much longer to play on my PS2, but luckily the leads arrived this morn. The PS2 is now set up and working :D I've only tried out one game so far (Sonic Heroes) but have more that I want to try.
10 games came with the PS2 - 2 of which I know I'll enjoy playing (Sonic Heroes and Lord of the Rings: The Return of the King) and 2 of which I might like playing (The Italian Job LA Heist and Splinter Cell). So that leaves 6-8 that I don't want (children's games, racing games and killing games). I'm waiting to hear if Chris and Sophie want to buy any of them off me because Sophie has a PS2. If not I'll check that they all work and then trade them in at a local game shop when I next go to town. I thought about trading them in at GAME but think I might get a better deal for them at a different game shop in the other local town.
As well as the 10 games that came with the PS2 I've also bought some more. I've had a look on the high street but the prices of the pre-owned PS1 and PS2 games vary greatly as does the quality of the discs. All of Cash Converters PS1 discs look too scratched to play but I did buy a PS2 game (Tony Hawk's Project 8) in there. It was £4 though, so a bit more expensive than I think I'm going to like to pay for games. GAME are selling used PS2 games for £5 so I've not bought any from there yet and wont unless I'm sure I'll like them. And when I went to a different town yesterday I bought a PS1 game (Who Wants to be a Millionaire) and PS2 game (SSX 3) in good condition from a charity shop for £1 each, bargain.
I've also bought a PS2 game (Need for Speed Most Wanted) for £2.70 on eBay which should be on it's way to me soon. And I bought a bundle of 2 PS2 games (Rayman Revolution and Rayman 3) plus a PS1 game (Rayman) for just £3.80 this morning but the seller's PayPal isn't working so I've got to try to pay them by postal order instead.
On Tue I only went out briefly to buy the Radio Times from the local shop. My dad has been on annual leave since Wed and he's off next week too. That's really been confusing me because he's usually only around at the weekends, so each day since Wed I've thought it's Sat! He seems to have been enjoying his annual leave so far - he went fishing on Wed, did loads of work in the garden on Thur and went out with me and mum yest. Next week he's looking forward to staying at the fishing resort where his sister and her partner rent a cabin for a few days.
On Wed I went into town while mum gave a talk at the library there about knitting because they're setting up their own knitting group like mum's Knit Lit at our village library. I successfully bought myself a new pair of slippers because my slipper boots were falling apart. When I'd finished my shopping I went for a drink in the library cafe and then surfed the Internet on one of the computers there til my mum had finished.
Then on Wed eve Claire came round for tea and we had fun playing on New Super Mario Bros Wii together. We didn't make any progress though. Later in the evening we went to the local cinema to see The Lovely Bones. I didn't really like it, it was very weird and quite sad. After that Claire came back briefly for a drink. Later that evening I caught up on my emails.
On Thur I had my 3rd Pathways to Work appt. I popped to the shops in town briefly before that. I used to have problems with Alfie helping himself to money from my purse, so I started to lock it away in a lockable box I had. I trust him more now though, so had stopped locking my money away. Dad suggested I restart now we know Alf is smoking again, but when I tried to put my money away I discovered that the lock on my box had broken. So I was looking out for a lockable cash tin in town but the cheapest I could find cost £9 and I thought that was too much. So my money isn't locked away at the moment. As well as the PS2 game from Cash Converters that I've already mentioned, I also bought a t-shirt from Sainsburys.
My Pathways to Work appt went well, my advisor was really pleased that I'd managed to phone the charity shops and was planning to start volunteering at Barnardo's. She suggested I phone them regularly to chase up the application form until I receive it. That appt only took 30mins as it was just updating my records on the computer. And we chatted about nails too because she was surprised to find someone else with long nails like her! Hopefully next month when I see her we'll be able to talk about how my volunteering is going.
Yesterday I went out with my parents. Firstly we headed to Tesco for a very quick shop and mum needed to return 2 items of clothing. They were both in the same bag yet she only remembered to return one! After that we headed to a town about 40mins away because mum had heard that there was a wool shop there. We all went in a few charity shops were we all got some good bargains. Dad bought himself a pair of jeans and as well as getting a PS1 and a PS2 game (mentioned earlier), I also bought a Victoria Wood DVD for my mum and a DVD of comedy clips for us all. The PS1 game, PS2 game and 2 DVDs all came to less than £4! While mum and dad went in the wool shop I went in Blockbuster, but didn't buy anything.
After that we headed to my uncle (dad's brother) and aunt's house. They were the 2 who celebrated their 45th wedding anniversary last month at a local restaurant. They've lived in their current house, about an hour's drive from us, for nearly 5 years now but we'd never visited them before yesterday. So because they live in the same direction as the town with the wool we went to see them. My uncle made us lunch. I'd planned to take sandwiches with me, but had left them at home. Whoops. The curry he made was nice, but a bit spicy for me so I couldn't eat as much as I would have liked to. We spent about 3 hours there in total which involved lots of chatting, trying to help my uncle sort his computer out (but both him and dad ignored my suggestions so that wasn't very successful!), admiring their knitted toilet roll covers (and sending a photo to Claire of course!), helping my aunt send some photos from her phone to their daughter, listening to some of my uncle's 100 year old records, walking round their land and seeing all their animals (2 cats, 4 geese, chickens...), talking about knitting (no surprise with my mum) and looking at their wedding photos from 45 years ago and laughing at the photos of my dad when he was 15. My uncle is the one who made my mum's giant knitting needles, so we took them with us so he could finish them off by gluing the ends in place. It was a nice but long afternoon so I fell asleep in the car on the way home :P
Today I'm home on my own, but I like it :) Alf stayed at a friend's last night, dad has gone out fishing and mum has gone to a knitting show in London with Claire and another of her friends. I phoned her when I got up this morning and she was on the train on the way there. She'd prebooked tickets for the 3 of them as that works out cheaper than buying on the door. But she'd left the tickets at home, so they'd have to buy new tickets once they got there. Whoops! My mum makes me laugh a lot. Last night when she got home from work she told me that she'd asked someone how old you have to be to join the Over Sixties Club, hehe! :P
Tomorrow morn I'm looking forward to browsing round the local carboot sale for bargain PS games and DVDs :D I'm also going to see if I can recognise the 2 stalls where I bought the wrong region DVDs last week and if so I'm going to ask if I can swap them. On Mon I might go into town to try to trade in my unwanted PS2 games and to chase Barnardo's up about the application form. That aft is Alf's parents' eve, so if I feel up to it I'm going to accompany my parents to that because I've not seen Alf's college before so that'll be interesting. On Tue eve I'm hoping to attend the teenage discussion group in the village.
Once again I've not done much reading this week but I did enjoy flicking through the latest issue of Cheers (AYME's bi-monthly magazine) which arrived in the post this week. I've also played on my DSi a bit more but am getting stuck on my current game, Yoshi's Island DS, now.
I discovered a few days ago that Mika sings the theme tune for a new film that is coming out soon called Kick Ass. The film, about Marvel Superheroes, doesn't interest me at all, but it's exciting that Mika sings the theme tune and that it will be released as a single. Some of Mika's singles don't get much publicity but hopefully this will because it's linked to a film and because it's produced by the famous music producer Red One (this song doesn't have the shout-out at the beginning though). You can see it here. I'm not that keen on the video because it's clips of the film interspersed with clips of Mika and I'd much prefer it all to be clips of Mika :P But I understand why they've done it that way. I like Mika with glasses, I think they suit him. I wasn't sure about the song to start with because it sounds much more computerised than his songs usually do, but it still has that distinctive Mika sound. After just one listen it was firmly stuck in my head, it's definitely catchy, and I've decided I like it :)
Since my last update I've watched a couple of films. I rewatched The Incredibles, but didn't enjoy it as much as I remembered I did last time. Hmmm. I also watched a Sandra Bullock film called The Net (and its extra features) which I rented. I loved it and would highly recommend it. It's got a very original plot, is quite a tense thriller and Sandra Bullock is as great as ever. In fact I then bought the DVD from eBay because I knew it was a film that I wanted to share with mum and would want to rewatch. I bought it for just £2. The DVD arrived this morning, just 2 days after I bought it, and is in perfect condition :) And today I found a trailer for Shrek Forever After on the Internet. You can see it here. I've loved all 3 Shrek films so far, but that trailer doesn't excite me. I'm sure I'll be seeing it in the cinema in 3D anyway when it's released this summer and hopefully it'll be as good as the other Shrek films, fingers crossed.
Since my last update I've also watched the first ever episode of Blackadder because I rented the DVD of the first series. I didn't enjoy it as much as I thought I would though, so I've not watched any more episodes and have returned the DVD.
I've not watched much on TV since my last update but do have loads to watch on iPlayer because the hard disc recorder isn't working, grrr. I've watched Sport Relief does Dragons' Den, One Born Every Minute and Sport Relief. I watched Sport Relief in the background while I was doing other stuff, but was waiting for interesting parts. There weren't many. James Corden's sketch as Smithy was the highlight of the programme for me, it was brilliant :D I was looking forward to seeing Annie Lennox perform but would much rather her perform one of her own songs than Bridge Over Troubled Water. And the Ashes to Ashes special didn't live up to my expectations either. They clearly didn't worry about the plot because it was all about spotting the 80s celebs in it. But of course I didn't recognise any of them, but did notice the poor plot. I was very excited to find out the other day that series 3 of Ashes to Ashes is starting on Friday April 2nd at 9pm. I can't wait! I'm a bit disappointed it will be shown on Fridays though as that will mean that mum wont be able to watch every other one live due to Knit Lit. So we need to have some kind of working hard disc recorder by then if not before.
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