Following my last blog post I received a comment from Indigo Jo containing some interesting questions that I'd not previously answered in my blog. So rather than just leaving a comment with my responses I thought I'd post them up here so everyone can read them.
The comment I will be responding to was:
I've looked through your blog and I had one question that doesn't seem to have been answered, which is what it was like not eating for so long? Did you never eat, or even have water (e.g. when it was a hot day) - you couldn't have waited until the night if you were dehydrated, surely? Did you ever see others eating and want some for yourself, and how did you and your parents deal with that?
When I was little my parents used to try to tempt to me to eat but I could never tolerate anything more than a teaspoon of food. If I had any more I'd be sick. There were also numerous attempts to feed me enterally (into my digestive system), rather than intravenously (into my bloodstream) but these all failed.
I could drink a small amount of water pre-transplant - I'd have sips of it with my tablets but I could never drink anywhere near normal volumes of it, I wouldn't have been able to keep it down. I never had problems with dehydration though. Thinking back on it I'm not really sure how that worked though as now it seems odd to me, but somehow dehydration was never a problem for me.
I never missed eating because it was something I'd never known. I'm sure it'd be very different if someone was suddenly unable to eat after being able to eat normally for many years though. Most of the time it didn't bother me at all and I never had any interest in food. I'd sit at the dining room table with a book and read my the rest of my family ate meals. I found a lot of celebrations were very centred around food though, especially in my extended family where every Christmas or other gathering would revolve around a big meal. So I sometimes found it difficult on those occasions, but it would be more that I'd get bored with all the fuss about the food, rather than wanting to join in.
I hope this answers the questions and if anyone has any more then please leave a comment and I'll try to respond to them. I also hope to get back to blogging properly soon. Thanks for reading.
Showing posts with label transplant. Show all posts
Showing posts with label transplant. Show all posts
Wednesday, 16 March 2011
Friday, 19 November 2010
My 4th transplant anniversary
Today is my 4 year transplant anniversary. I'm having quite a reflective day and I've been doing lots of thinking about the last 4 years and of course thinking of my amazing donor family too. I feel very privileged to be in contact with my donor family and emailed my donor's sisters this morning to let them know that their family is in my thoughts today.
To me it doesn't feel right celebrating my transplant anniversary when I know what my donor family are going through, but some years I like to do a little something with my family. My parents asked me to choose our evening meal today because one of the biggest changes since my transplant has been me learning to eat. Mum is at work til 8pm, but when she gets in we'll all be sitting down together and having Chinese crispy duck with pancakes, yum.
If you aren't already on the organ donor register then please sign up here, you can save lives like mine. If you've already signed up then please spread the word. Thanks.
To me it doesn't feel right celebrating my transplant anniversary when I know what my donor family are going through, but some years I like to do a little something with my family. My parents asked me to choose our evening meal today because one of the biggest changes since my transplant has been me learning to eat. Mum is at work til 8pm, but when she gets in we'll all be sitting down together and having Chinese crispy duck with pancakes, yum.
If you aren't already on the organ donor register then please sign up here, you can save lives like mine. If you've already signed up then please spread the word. Thanks.
Monday, 18 October 2010
GFR and clinic at Hosp A
Today (18th Oct 2010) I spent most of the day at Hosp A. I'd asked for two appts to be on the same day so we could save ourselves a 60 mile round trip. It made it into quite a long day though. I am aware I've used some medical terminology in this post but I hope I've explained everything ok. If there's anything I need to explain but haven't, just let me know in a comment :)
We set off in plenty of time this morn (which meant me getting up at 7.45am, eek!) and left ourselves an hour and a quarter to travel the 30 miles to Hosp A as that usually works out fine. The hosp is in a city and we have to use a few major roads to get there which is why it takes so long to cover 30 miles. Unfortunately there was a traffic accident on our route this morn which delayed us and then the traffic just seemed very heavy at a couple of other places on our route. So I had to ring the department up and let them know we'd be a little bit late. Think I was about 15/20mins late in the end.
When we got to the hosp we nipped into the main toilets in the concourse and weren't impressed to find that only 2 out of 5 cubicles had toilet roll. When I was there last Thur only 3 out of 5 had. When we returned to the toilets about an hour later we couldn't believe that only 1 of the 5 cubicles had toilet roll so we complained at the reception desk. The lady there said she's already phoned up about it but phoned again. When we called back later there were toilet rolls in all the cubicles :)
I then headed to the nuclear medicine department for my kidney function test, known as a GFR. The antirejection medication I take, Tacrolimus, can damage your kidneys so they have to keep a close eye on mine. I had this test once at Hosp B in the 4 years following my transplant but my consultant at Hosp A suggested I had it 3 monthly. I persuaded him to make it 6 monthly, but if my results from today's test come back fine I'm going to ask him if I can have it annually. The test consisted of an injection of radioactive material into one hand and then blood taken from the other hand (via a cannula) 2, 3 and 4 hours later. So lots of waiting around.
I was a bit nervous about the injection and the cannula because sometimes phlebotomists struggle with my veins. The doctor I had for the injection didn't seem very friendly but she listened to me when I told her which my best veins were and said she'd be fine using veins in my hands (as the ones in my elbows are rubbish, but sometimes phlebs won't accept my word from that and want to try them). So she inserted a butterfly needle into my right hand, flushed it and then gave me the radioactive injection. As she gave me the injection I felt the cold liquid and then felt a bit hot and slightly faint. I didn't think anything of it as I sometimes feel a little bit faint after blood tests, but I took my fleece off and told her how I felt.
Then things got a lot worse and I felt really really ill. I've felt a bit faint after blood tests before, but not like what happened today. I felt like I was boiling up, my heart was pounding, I felt really faint, my hearing went funny (everything went echoey), everything seemed really distant and it was really scary, I was terrified. I'm not entirely sure what happened next but I think I was helped onto a bed and was wheeled to a different part of the department. Mum said it was all over quickly but it felt like a while to me.
I gradually started to feel a bit better and could sit up. Most of the radioactive team were away on a training morning so there weren't many people around, just the doctor who'd given me the injection and two nurses. We spoke to them a bit and apparently there isn't anything in the injection that people can react to and no-one had ever had any problems with it before. They seemed to think that I'd just felt funny after having an injection, but I know it was more than that.
Mum thinks my body has problems with adrenaline because often I seem to get extreme reactions to relatively harmless things. Apparently the radioactive material is seen as a waste product by your body so I think mine reacted to that for some reason. Although I'd had the test at Hosp B once before I don't know if they used the same radioactive material. I felt back to normal within about 20/30mins I think, but I don't really know what length of time it was. I felt light headed and my hearing went funny on a couple of occasions over the next few hours but it wasn't too bad. I don't understand my body! :P
The waiting around between blood tests wasn't as bad as I expected. There is free wireless Internet in the concourse, so I surfed the Internet on my iPhone and listened to some new music I'd downloaded last night. I decided not to have a cannula inserted just after the injection but to have it when I returned for my first blood test after 2 hours. We hadn't been told we had to return to a different reception so were waiting in the wrong place for a little while! I told the doctor which was my best vein on my left hand and she said it wouldn't take a cannula. But it did! :) I thought their way of protecting the cannula was funny, they didn't bandage it like Hosp B used to do, they just put a tubigrip over my hand :P That was much more comfortable once a nurse suggested cutting a thumb hole in it :) The cannula was fine for my first and second blood tests and just lasted for the third one, phew!
As a result of being late for my GFR and then having some of my blood tests a little late we were a bit late to my transplant clinic which had been scheduled after that. But I'd already text S, the transplant co-ordinator, to let her know, so that was fine. Mum attended the clinic appt with me and also in the room were my consultant, Dr W, the transplant co-ordinator, S, and my dietician, C. While we were waiting for Dr W to arrive we chatted to S and C. I'm still not sure about S but I really like C :)
Dr W took my dizziness seriously which I was really pleased with. He took my sitting and standing blood pressure which were both exactly the same and within the normal range so that suggests it's not related to my blood pressure. He thought that lying down when I get dizzy might still help though. He said when I get dizzy he wants me to do a couple of things to get some more information about it. He wants me to monitor my pulse and see if it speeds up or is irregular at all. And he wants someone else to look at my eyes and see if they flicker at all. He's also going to contact my GP about me getting a 24 hour tape (where your heart rhythm is monitored for 24 hours at home) done at my local hospital.
Dr W thought my headaches might be tension headaches as they tend to occur in the evenings and are in my forehead. Apparently there's not really anything that can be done though. Amitriptyline sometimes helps but I'm on that already. So he said just to see how they go and be aware that they might be caused by tension, but apparently there's nothing I do to fix that so I'm not sure why being aware of it will be helpful! S thought some gel pads that you can buy from the supermarket for migraines might help. And Dr W suggested it might be a good idea for me to try drinking more, or at least to spread my drinks out more evenly throughout the day, rather than drinking most of them at night, in case the headaches are caused by dehydration.
I told Dr W how my gynaecology stuff is going and asked him what he thought about me trying the combined pill. I'm currently on a progesterone only pill (POP) as I'd been told because I had liver problems in the past I couldn't have a pill containing oestrogen. But my new liver is healthy and has never had any problems. And I'm having trouble with my periods at the moment, which the POP doesn't control but a combined pill would. He couldn't see any problems with me having a combined pill so suggested I talk to my gynaecologist about that when I see her next (on Dec 23rd). So I'm hoping she'll say yes and that'll sort my periods out, fingers crossed.
I mentioned that my abdominal pains are better at the moment, but I'm not sure if that's due to doubling the dose of my amitriptyline, starting some fibre supplements or varying my diet more. Or maybe a mixture of those things. Dr W was pleased with that but wasn't surprised that I'm still getting some pains because my body is still getting used to what's normal for me.
Everyone was very pleased that my weight is so stable, that I'm finding eating easier at the moment and that I'm being a bit more adventurous with trying new foods.
I told my consultant how I'd corrected my sleep pattern for about 6 weeks but hadn't found that my productive time (11pm onwards) came at any other time of the day, I'd just lost it completely. Then when it slipped I couldn't motivate myself to correct it again. He suggested I tried to correct it again but more gradually this time. I've not decided if I'm going to do that yet - it's so hard fighting my body.
Dr W couldn't offer any help for my frequent coldsores so I guess I'll just have to put up with them. He didn't have any ideas about my eye ache and was as puzzled as everyone else has been about the rash I get under my eyes from the sun, but thought sunglasses might be a good idea, so I'll look into them again next summer.
After I told Dr W about my reaction to the GFR he was very puzzled as he didn't think there was anything in it that I could react to either. I told him I was worried about my next one following my experience today so he said before that he'll arrange for me to have an injection of a small quantity of the radioactive material to see if I react to that.
I asked about the results of the DEXA scan I had about a month ago and I'm glad I did because I don't think Dr W would have told me otherwise. Apparently my bone density was -1.9 which is right at the bottom of the normal range. I asked if that could be due to my steroids but he thought it was more likely to be due to things in my body being a bit delayed due to me being so ill. He said they'd keep a close eye on it but wants to start me on a calcium supplement as a precaution. He gave me a prescription for that to take to the pharmacy there but when we tried that they said we'd have to wait 40mins! That would have meant we'd have had to drive home in the rush hour so we decided against that. We were supposed to go back and ask for a different prescription to take to my GP but I've just emailed my GP the details from that prescription and I'm sure he'll prescribe it for me.
Finally I mentioned to Dr W that I'd volunteered him to talk at the PINNT weekend next year that I'm going to speak at. He didn't seem to mind :)
It was nice to head home after a long day, I think we'd spent about 6 hours at the hosp. I've got a 2 and a half week break before my next hosp appt. I'll next be seeing Dr W when I have my annual scope at Hosp A sometime in Dec and I think I'll see him properly in clinic in Jan or Feb.
I'm just having a quiet evening. Alf had some friends round briefly earlier and mum was chatting to one about knitting because she'd started her off knitting last time she came round! Mum also got chatting to two fellow knitters at the hosp today, she must attract them in some way! :P
I've got a few nice plans for the next few days. Tomorrow aft a friend with ME is coming round and on Wed eve I'm going to the cinema with Claire to see Eat, Pray, Love. Then on Sat I've got my first concert of this spell of them - Marina and the Diamonds! I'm so excited :D And next Mon is my second concert - Eliza Doolittle :)
We set off in plenty of time this morn (which meant me getting up at 7.45am, eek!) and left ourselves an hour and a quarter to travel the 30 miles to Hosp A as that usually works out fine. The hosp is in a city and we have to use a few major roads to get there which is why it takes so long to cover 30 miles. Unfortunately there was a traffic accident on our route this morn which delayed us and then the traffic just seemed very heavy at a couple of other places on our route. So I had to ring the department up and let them know we'd be a little bit late. Think I was about 15/20mins late in the end.
When we got to the hosp we nipped into the main toilets in the concourse and weren't impressed to find that only 2 out of 5 cubicles had toilet roll. When I was there last Thur only 3 out of 5 had. When we returned to the toilets about an hour later we couldn't believe that only 1 of the 5 cubicles had toilet roll so we complained at the reception desk. The lady there said she's already phoned up about it but phoned again. When we called back later there were toilet rolls in all the cubicles :)
I then headed to the nuclear medicine department for my kidney function test, known as a GFR. The antirejection medication I take, Tacrolimus, can damage your kidneys so they have to keep a close eye on mine. I had this test once at Hosp B in the 4 years following my transplant but my consultant at Hosp A suggested I had it 3 monthly. I persuaded him to make it 6 monthly, but if my results from today's test come back fine I'm going to ask him if I can have it annually. The test consisted of an injection of radioactive material into one hand and then blood taken from the other hand (via a cannula) 2, 3 and 4 hours later. So lots of waiting around.
I was a bit nervous about the injection and the cannula because sometimes phlebotomists struggle with my veins. The doctor I had for the injection didn't seem very friendly but she listened to me when I told her which my best veins were and said she'd be fine using veins in my hands (as the ones in my elbows are rubbish, but sometimes phlebs won't accept my word from that and want to try them). So she inserted a butterfly needle into my right hand, flushed it and then gave me the radioactive injection. As she gave me the injection I felt the cold liquid and then felt a bit hot and slightly faint. I didn't think anything of it as I sometimes feel a little bit faint after blood tests, but I took my fleece off and told her how I felt.
Then things got a lot worse and I felt really really ill. I've felt a bit faint after blood tests before, but not like what happened today. I felt like I was boiling up, my heart was pounding, I felt really faint, my hearing went funny (everything went echoey), everything seemed really distant and it was really scary, I was terrified. I'm not entirely sure what happened next but I think I was helped onto a bed and was wheeled to a different part of the department. Mum said it was all over quickly but it felt like a while to me.
I gradually started to feel a bit better and could sit up. Most of the radioactive team were away on a training morning so there weren't many people around, just the doctor who'd given me the injection and two nurses. We spoke to them a bit and apparently there isn't anything in the injection that people can react to and no-one had ever had any problems with it before. They seemed to think that I'd just felt funny after having an injection, but I know it was more than that.
Mum thinks my body has problems with adrenaline because often I seem to get extreme reactions to relatively harmless things. Apparently the radioactive material is seen as a waste product by your body so I think mine reacted to that for some reason. Although I'd had the test at Hosp B once before I don't know if they used the same radioactive material. I felt back to normal within about 20/30mins I think, but I don't really know what length of time it was. I felt light headed and my hearing went funny on a couple of occasions over the next few hours but it wasn't too bad. I don't understand my body! :P
The waiting around between blood tests wasn't as bad as I expected. There is free wireless Internet in the concourse, so I surfed the Internet on my iPhone and listened to some new music I'd downloaded last night. I decided not to have a cannula inserted just after the injection but to have it when I returned for my first blood test after 2 hours. We hadn't been told we had to return to a different reception so were waiting in the wrong place for a little while! I told the doctor which was my best vein on my left hand and she said it wouldn't take a cannula. But it did! :) I thought their way of protecting the cannula was funny, they didn't bandage it like Hosp B used to do, they just put a tubigrip over my hand :P That was much more comfortable once a nurse suggested cutting a thumb hole in it :) The cannula was fine for my first and second blood tests and just lasted for the third one, phew!
As a result of being late for my GFR and then having some of my blood tests a little late we were a bit late to my transplant clinic which had been scheduled after that. But I'd already text S, the transplant co-ordinator, to let her know, so that was fine. Mum attended the clinic appt with me and also in the room were my consultant, Dr W, the transplant co-ordinator, S, and my dietician, C. While we were waiting for Dr W to arrive we chatted to S and C. I'm still not sure about S but I really like C :)
Dr W took my dizziness seriously which I was really pleased with. He took my sitting and standing blood pressure which were both exactly the same and within the normal range so that suggests it's not related to my blood pressure. He thought that lying down when I get dizzy might still help though. He said when I get dizzy he wants me to do a couple of things to get some more information about it. He wants me to monitor my pulse and see if it speeds up or is irregular at all. And he wants someone else to look at my eyes and see if they flicker at all. He's also going to contact my GP about me getting a 24 hour tape (where your heart rhythm is monitored for 24 hours at home) done at my local hospital.
Dr W thought my headaches might be tension headaches as they tend to occur in the evenings and are in my forehead. Apparently there's not really anything that can be done though. Amitriptyline sometimes helps but I'm on that already. So he said just to see how they go and be aware that they might be caused by tension, but apparently there's nothing I do to fix that so I'm not sure why being aware of it will be helpful! S thought some gel pads that you can buy from the supermarket for migraines might help. And Dr W suggested it might be a good idea for me to try drinking more, or at least to spread my drinks out more evenly throughout the day, rather than drinking most of them at night, in case the headaches are caused by dehydration.
I told Dr W how my gynaecology stuff is going and asked him what he thought about me trying the combined pill. I'm currently on a progesterone only pill (POP) as I'd been told because I had liver problems in the past I couldn't have a pill containing oestrogen. But my new liver is healthy and has never had any problems. And I'm having trouble with my periods at the moment, which the POP doesn't control but a combined pill would. He couldn't see any problems with me having a combined pill so suggested I talk to my gynaecologist about that when I see her next (on Dec 23rd). So I'm hoping she'll say yes and that'll sort my periods out, fingers crossed.
I mentioned that my abdominal pains are better at the moment, but I'm not sure if that's due to doubling the dose of my amitriptyline, starting some fibre supplements or varying my diet more. Or maybe a mixture of those things. Dr W was pleased with that but wasn't surprised that I'm still getting some pains because my body is still getting used to what's normal for me.
Everyone was very pleased that my weight is so stable, that I'm finding eating easier at the moment and that I'm being a bit more adventurous with trying new foods.
I told my consultant how I'd corrected my sleep pattern for about 6 weeks but hadn't found that my productive time (11pm onwards) came at any other time of the day, I'd just lost it completely. Then when it slipped I couldn't motivate myself to correct it again. He suggested I tried to correct it again but more gradually this time. I've not decided if I'm going to do that yet - it's so hard fighting my body.
Dr W couldn't offer any help for my frequent coldsores so I guess I'll just have to put up with them. He didn't have any ideas about my eye ache and was as puzzled as everyone else has been about the rash I get under my eyes from the sun, but thought sunglasses might be a good idea, so I'll look into them again next summer.
After I told Dr W about my reaction to the GFR he was very puzzled as he didn't think there was anything in it that I could react to either. I told him I was worried about my next one following my experience today so he said before that he'll arrange for me to have an injection of a small quantity of the radioactive material to see if I react to that.
I asked about the results of the DEXA scan I had about a month ago and I'm glad I did because I don't think Dr W would have told me otherwise. Apparently my bone density was -1.9 which is right at the bottom of the normal range. I asked if that could be due to my steroids but he thought it was more likely to be due to things in my body being a bit delayed due to me being so ill. He said they'd keep a close eye on it but wants to start me on a calcium supplement as a precaution. He gave me a prescription for that to take to the pharmacy there but when we tried that they said we'd have to wait 40mins! That would have meant we'd have had to drive home in the rush hour so we decided against that. We were supposed to go back and ask for a different prescription to take to my GP but I've just emailed my GP the details from that prescription and I'm sure he'll prescribe it for me.
Finally I mentioned to Dr W that I'd volunteered him to talk at the PINNT weekend next year that I'm going to speak at. He didn't seem to mind :)
It was nice to head home after a long day, I think we'd spent about 6 hours at the hosp. I've got a 2 and a half week break before my next hosp appt. I'll next be seeing Dr W when I have my annual scope at Hosp A sometime in Dec and I think I'll see him properly in clinic in Jan or Feb.
I'm just having a quiet evening. Alf had some friends round briefly earlier and mum was chatting to one about knitting because she'd started her off knitting last time she came round! Mum also got chatting to two fellow knitters at the hosp today, she must attract them in some way! :P
I've got a few nice plans for the next few days. Tomorrow aft a friend with ME is coming round and on Wed eve I'm going to the cinema with Claire to see Eat, Pray, Love. Then on Sat I've got my first concert of this spell of them - Marina and the Diamonds! I'm so excited :D And next Mon is my second concert - Eliza Doolittle :)
Monday, 11 October 2010
Other health stuff
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.
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.
Friday, 8 October 2010
Abdominal pains, gynae problems and orthodontics
I spent a week alone in June when the rest of my family went to Glastonbury Festival. Unfortunately over that weekend they were away I had horrendous abdominal pains that were constant and agonising. I didn't seek medical advice about them as I didn't want to be admitted to a new hospital (Hosp A, where I'd never stayed overnight before) while my parents were away. The pain went away completely after a couple of days and didn't return. I don't know if that was related to any of my medical problems or just one of those things. My consultant thought it was probably gastro related.
I can't remember exactly what was happening when I last posted, but my consultant at Hosp A had prescribed me two medications to try taking for my abdominal pains. Spasmonal was an anti-spasmodic that I had to take before every meal. That didn't help the pains at all. Amitriptyline makes the nerves less sensitive to pain and I had to take it every evening. That seemed to work well for a couple of weeks but then the effect wore off. When I told my consultant about the results of trialling those medications he was fine that I'd stopped taking Spasmonal and suggested I increased the dose of my Amitriptyline from 10mg daily to 20mg daily in the hope that that would help. He said he'd even be happy for me to take up to 50mg if I needed to. I've also started taking a fibre supplement most days (it's supposed to be everyday, but I don't remember everyday). Either one or both of those seem to have done the trick and my abdominal pains are now much more manageable. I usually just get tummy ache now rather than a pain, although I do still get bad days and can't work out why.
It was hoped that the Amitriptyline would help my sleep and nocturnalism too but it hasn't. I made a big effort in Aug to normalise my sleep pattern and kept it up for over a month, but it was such a struggle fighting my body. I'd hoped that if I went to bed earlier and got up earlier then my productive period which used to come from about 11pm and last to the early hours of the morn would come earlier, but it didn't, I just lost it completely. Then my sleep pattern started to slip a bit and I can't motivate myself to correct it again. I did have to temporarily though (although that was actually more a case of me going to bed late and being awoken early) as our next door neighbours had builders making a din every day from 8am til 5pm for over 3 weeks! My sleep pattern isn't as bad as it used to be, but it's not the same as 'normal' people.
I really can't remember how much about this particular health problem I've mentioned before, so sorry if I'm repeating myself. Before my transplant my periods stopped because I was so ill. Just after they returned when I was recovering after my transplant (so summer 2007), I was admitted to hospital on a few occasions suffering with intense abdominal pain. I was given IV Morphine for the pain each time. Lots of explanations were suggested from pancreatitis (which I'd had immediately post transplant), to adhesions (as a result of all my operations). In Dec 2007 I had an ultrasound scan which showed that I had an ovarian cyst. It was suggested that taking the pill would stop the monthly pain but because of my past liver problems my consultant wasn't happy for me to have a pill containing oestrogen, so I was started on a progesterone only pill instead. That kept the pain away. Unfortunately that pill caused my periods to become very heavy and irregular.
The gynaecologist who originally diagnosed me and started me on the pill hadn't offered me any follow up so I was referred to see a gynaecologist at Hosp A. On 31st Aug I saw her for the second time and together we came up with a plan of action. I was supposed to see her about 12 weeks before that but because my older brother, Chris, let me down with a lift very last minute, I had to cancel that appt and reschedule another one, but the waiting list was 12 weeks. The plan we came up with was that I'd have an ultrasound scan to see how the cyst was doing. If it had shrunk or disappeared then I'd come off the pill and see if my periods settled down on my own. I didn't want to just stop the pill without having a scan because I was scared of the pain returning. I also had some bloods taken to check my hormone levels. I had a pelvic ultrasound on 27th Sept and managed to confuse all the doctors because they couldn't work out what was what in my anatomy :P Unfortunately though that scan showed that I had cysts. My gynaecologist has requested a second scan on 5th Nov and another blood test which I think I'll be having next week. Then she'll arrange me an appt to discuss the results of the tests with her. I'm confident that she'll be able to come up with a good plan of action because she really seems to know her stuff.
I had my braces tightened at an orthodontist appt on 4th June and then again on 16th July. My braces are supposed to be tightened every 6 to 8 weeks but when I tried to make my next appt I was told that I wouldn't be able to be seen for another 10 weeks and then later I received a letter cancelling that appt and rescheduling it for 3 weeks later, meaning a 13 week gap between appts. I wasn't very happy with that because the less frequent the tightenings, the longer I'll have to have the braces for. However on 18th July my braces broke so I returned to the orthodontist on 22nd July for an emergency appt to get them repaired. I then had a good spell with them until they broke again on 21st Sept, so I had another emergency appt on 23rd Sept to have them fixed. I've got a proper appt coming up on 14th Oct to have them tightened. I'm going to ask my orthodontist again about when I'll be able to have them off because it clearly won't be Oct like he said last time I saw him. I suspect it'll be a while off yet because my gaps still haven't fully closed. I find my braces so frustrating though, as well as all the emergency appts to get them fixed when they break (it's a 60 mile round trip to the hospital), they also cut the inside of my mouth a lot which can be very painful.
I was seeing a hygienist at Hosp A but she didn't work the same days as my orthodontist so we'd have to make another 60 mile round trip there each time to see her. My mum told my orthodontist how she wasn't happy to do that, so he said I could find a more local hygienist, but he did want me to continue to see one while I had my braces. When I had a dental check-up locally this summer (which went fine) we enquired about seeing the hygienist there but she's private and charges £42 for half an hour! I wasn't happy to pay that as the one I was seeing at Hosp A was an NHS one, so we need to see if we can find an NHS one closer to home.
I can't remember exactly what was happening when I last posted, but my consultant at Hosp A had prescribed me two medications to try taking for my abdominal pains. Spasmonal was an anti-spasmodic that I had to take before every meal. That didn't help the pains at all. Amitriptyline makes the nerves less sensitive to pain and I had to take it every evening. That seemed to work well for a couple of weeks but then the effect wore off. When I told my consultant about the results of trialling those medications he was fine that I'd stopped taking Spasmonal and suggested I increased the dose of my Amitriptyline from 10mg daily to 20mg daily in the hope that that would help. He said he'd even be happy for me to take up to 50mg if I needed to. I've also started taking a fibre supplement most days (it's supposed to be everyday, but I don't remember everyday). Either one or both of those seem to have done the trick and my abdominal pains are now much more manageable. I usually just get tummy ache now rather than a pain, although I do still get bad days and can't work out why.
It was hoped that the Amitriptyline would help my sleep and nocturnalism too but it hasn't. I made a big effort in Aug to normalise my sleep pattern and kept it up for over a month, but it was such a struggle fighting my body. I'd hoped that if I went to bed earlier and got up earlier then my productive period which used to come from about 11pm and last to the early hours of the morn would come earlier, but it didn't, I just lost it completely. Then my sleep pattern started to slip a bit and I can't motivate myself to correct it again. I did have to temporarily though (although that was actually more a case of me going to bed late and being awoken early) as our next door neighbours had builders making a din every day from 8am til 5pm for over 3 weeks! My sleep pattern isn't as bad as it used to be, but it's not the same as 'normal' people.
I really can't remember how much about this particular health problem I've mentioned before, so sorry if I'm repeating myself. Before my transplant my periods stopped because I was so ill. Just after they returned when I was recovering after my transplant (so summer 2007), I was admitted to hospital on a few occasions suffering with intense abdominal pain. I was given IV Morphine for the pain each time. Lots of explanations were suggested from pancreatitis (which I'd had immediately post transplant), to adhesions (as a result of all my operations). In Dec 2007 I had an ultrasound scan which showed that I had an ovarian cyst. It was suggested that taking the pill would stop the monthly pain but because of my past liver problems my consultant wasn't happy for me to have a pill containing oestrogen, so I was started on a progesterone only pill instead. That kept the pain away. Unfortunately that pill caused my periods to become very heavy and irregular.
The gynaecologist who originally diagnosed me and started me on the pill hadn't offered me any follow up so I was referred to see a gynaecologist at Hosp A. On 31st Aug I saw her for the second time and together we came up with a plan of action. I was supposed to see her about 12 weeks before that but because my older brother, Chris, let me down with a lift very last minute, I had to cancel that appt and reschedule another one, but the waiting list was 12 weeks. The plan we came up with was that I'd have an ultrasound scan to see how the cyst was doing. If it had shrunk or disappeared then I'd come off the pill and see if my periods settled down on my own. I didn't want to just stop the pill without having a scan because I was scared of the pain returning. I also had some bloods taken to check my hormone levels. I had a pelvic ultrasound on 27th Sept and managed to confuse all the doctors because they couldn't work out what was what in my anatomy :P Unfortunately though that scan showed that I had cysts. My gynaecologist has requested a second scan on 5th Nov and another blood test which I think I'll be having next week. Then she'll arrange me an appt to discuss the results of the tests with her. I'm confident that she'll be able to come up with a good plan of action because she really seems to know her stuff.
I had my braces tightened at an orthodontist appt on 4th June and then again on 16th July. My braces are supposed to be tightened every 6 to 8 weeks but when I tried to make my next appt I was told that I wouldn't be able to be seen for another 10 weeks and then later I received a letter cancelling that appt and rescheduling it for 3 weeks later, meaning a 13 week gap between appts. I wasn't very happy with that because the less frequent the tightenings, the longer I'll have to have the braces for. However on 18th July my braces broke so I returned to the orthodontist on 22nd July for an emergency appt to get them repaired. I then had a good spell with them until they broke again on 21st Sept, so I had another emergency appt on 23rd Sept to have them fixed. I've got a proper appt coming up on 14th Oct to have them tightened. I'm going to ask my orthodontist again about when I'll be able to have them off because it clearly won't be Oct like he said last time I saw him. I suspect it'll be a while off yet because my gaps still haven't fully closed. I find my braces so frustrating though, as well as all the emergency appts to get them fixed when they break (it's a 60 mile round trip to the hospital), they also cut the inside of my mouth a lot which can be very painful.
I was seeing a hygienist at Hosp A but she didn't work the same days as my orthodontist so we'd have to make another 60 mile round trip there each time to see her. My mum told my orthodontist how she wasn't happy to do that, so he said I could find a more local hygienist, but he did want me to continue to see one while I had my braces. When I had a dental check-up locally this summer (which went fine) we enquired about seeing the hygienist there but she's private and charges £42 for half an hour! I wasn't happy to pay that as the one I was seeing at Hosp A was an NHS one, so we need to see if we can find an NHS one closer to home.
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.
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
Tuesday, 4 May 2010
Getting up to date with April - part 5 (more day to day stuff)
On Wed 21st April I was woken early by dad shouting Alf because he'd missed his bus to college. Dad ended up running him to a nearby bus stop in the car and Alf caught the bus there. I managed to get back to sleep after that though :) A science GCSE certificate from my secondary school arrived in the post that morn. I realised a little while ago that I'd never received it so Claire chased it up for me. That morn I had to wait in for some deliveries because my mum was out. My Tac was delivered and dad received a waterproof MP3 player for him to listen to while swimming. He'd got one a few weeks ago but it didn't work, so he'd sent it back for an exchange. Luckily the second one he received worked fine and dad seems very happy with it.
Mum had to go to the village library for a lesson in emails. Mum doesn't use her emails at work because the library is single manned so she hasn't got time to read through all her emails (most of which are county council ones that are sent to lots of people and have no relevance to my mum) and reply to the ones that need replying to while serving customers. And she's not going to go in and do it in her own time and not get paid for it. Mum's opinion is that if it's important people can phone her! However the higher people think that because mum doesn't use her emails she can't use her emails so arranged for her to have a lesson. But the lesson was a complete waste of time. The email programme my mum has to use looked different to the one that the teacher used, so she didn't know what she was doing! My mum hasn't had anything to do with her emails for a couple of years now so she had 1500 unwanted emails to reply to. Between them they couldn't find a way to delete them all so the teacher made my mum delete them one-by-one and then delete them one-by-one from the deleted items folder! And that was the lesson over because that took a couple of hours! How ridiculous. I think my mum is attempting to learn the basics of her emails now because there's a qualification she wants to get but she'll need to use emails to get it.
When my mum got back we popped round to the local shop and the village butchers together. We couldn't believe that the butchers had no free range chicken! So we didn't get any chicken for them - mum changed the meal we were going to have for tea and based it around ham instead of chicken. If we'd have wanted free range chicken we would have had to drive into town to go to a supermarket. I thought it was ridiculous that the village butchers had no free range chicken, I think I might write a letter to them about it - it's on my list of things to do.
That evening Chris and Sophie popped round again and I spoke to Lizzy on the phone to confirm Sat.
On Thur 22nd April I attended my first physio appt at Hosp H. I was very nervous beforehand in case I had another physio who knew nothing about ME but it went much better than I expected. The physio I saw knew a lot about ME and was very easy to talk to. We talked about the importance of pacing (a technique for managing energy levels in ME). It sounds like her idea of pacing would be for me to work out my baseline for various activities (how much I can do comfortably) and then try to gradually increase that. She gave me an activity diary to fill out for a week (which I've already done) and asked me to find my walking baseline by timing how long I can walk for on a good day, an ok day and a bad day and then averaging the times out. I did try this once on an ok day but found I could just keep walking until I got to where I was going. I recorded when my legs felt more tired though and would have recorded when my heels started hurting but they were fine that day. I'll show that and the activity diary to my physio when I see her again on Wed 12th May. I also mentioned the pain I'm getting in my feet due to plantar fasciitis so she said that she'll have a look at my feet next time for me.
After my physio appt I met mum on a bench outside the hosp where she'd struck up conversation with a stranger. Hehe. Then we had our packed lunches in the hospital quadrangle, which brought back some memories of spending time there when I was younger. After lunch we went to visit my Nan who at this point hoped to be discharged the following day. She hadn't had an xray as the doctors had decided that she didn't have a broken rib. I think that they thought that her feeling ill had just been related to her heart problem. That evening Chris popped round.
I didn't go out on Fri 23rd April but had a busy morning wrapping some presents for friends. It was Claire's birthday the following Mon (26th April), but she was coming round that evening so I wanted to be able to give her her wrapped presents then. I bought Claire the Radio Times exclusive Doctor Who book and 2 DVDs (Speed and Memoirs of a Geisha). I also wrapped up the doll we'd bought for Mia's 4th birthday. It isn't her birthday until this Thur (6th May), but because her and Lizzy were coming round the following day we wanted to give Lizzy Mia's present then. That afternoon I decluttered and tidied my room a little bit and then Claire came round in the evening.
On Sat 24th April my Nan was discharged from hospital and dad helped her settle back at home in her flat :) Lizzy and Mia came round about lunchtime to spend the afternoon with us. It was a lovely warm sunny day so we sat out in the garden and I had to get changed out of my poloneck and into a t-shirt! We chatted a lot, went to a local jumble sale (where I bought the Joseph soundtrack on CD and A Series of Unfortunate Events audiobook for 25p each) and had a BBQ for tea. Me and Lizzy also played on my Wii together but Mia decided she wanted to play too so that was good fun :) I asked Lizzy to record Holly's Battlefront prog when it was on TV again a little while ago and write it to DVD for me, so when she came round she bought 5 DVDs each with a copy of the programme on :) Lizzy also lent me some short story books that she thought I could try because I can't read novels at the moment. I've only tried one so far but I managed to read it :)
On the morn of Sun 25th April lots of old Mr Gumpy style cars came driving down our road. Mum sat out on the front bench and waved to each of them but she often didn't get a response from the snooty drivers. Mum thought she saw about 70 in total. We only live in a little village so this was quite intriguing! Mum heard from someone that they were going to a posh house in the next village (not really sure why), so we had a walk there to look for the cars. Unfortunately they'd all left by this point - they must have gone a different way as they didn't go back past our house. Then we walked to the village bowls club where dad was playing bowls. We stopped and chatted to people there for about an hour. I had no idea who most of the people were but everyone seemed to know me and everything about my health too! Thanks mum - she tells everyone everything whereas I like to be a bit more private! I wanted a drink there but they didn't have any milk or apple juice. They only had J2Os (which I think would be too strong for me), fizzy drinks (yuk) and alcoholic drinks.
I heard from Becky that the Telegraph were giving away Dr Who audiobooks. I'd missed Sat's because I didn't know at that time but wandered round to the local shop on Sun to have a look. The Sun Telegraph only had half of the audiobook (the second half would be in Mon's paper) and cost almost £2 so I decided against it. I'm sure they'll turn up at carboot sales and in charity shops soon.
On the morn of Mon 26th April I phoned Barnardo's to see if they had anything for me to do if I went in that afternoon. Usually the manager (who I know) answers the phone, but she wasn't in that day so the deputy manager answered the phone instead. She had no idea who I was so had to go off to ask if anyone else had heard of me! Then when she got back to the phone after speaking to someone else she said "Does you mum bring you in?". I'd prefer not to be known as the volunteer who's mum brings her in! Then I was told that there was no work for me that day.
Me and mum went into town anyway. On the way we went via someone's house to pick up a Doctor Who DVD (Utopia from series 3) that they had been offering on Freecycle and I'd got. We went into all the usual charity shops. In a charity shop I nearly bought the Blue Planet DVD boxset for £5 but I left it to think about it and when I went back for it it had been sold. Never mind. I bought 3 Agatha Christie audio books in one charity shop for 75p each and bought both parts of a Dr Who audiobook called The Stone Rose (which had originally been free with the Radio Times) for 50p in another charity shop. Me and mum stopped for drinks in a cafe, but again I didn't have much luck with drinks. They couldn't sell drinks of milk and didn't have any clear apple juice so I had cloudy apple juice instead (which I don't like as much). Me and mum did the crossword while we had our drinks. Then we called in at 2 supermarkets before heading home.
Once we got back to the village I called in at the surgery to pick up some tablets I'd ordered. I also found out that a new suncream had been ordered for me.
Mum had to go to the village library for a lesson in emails. Mum doesn't use her emails at work because the library is single manned so she hasn't got time to read through all her emails (most of which are county council ones that are sent to lots of people and have no relevance to my mum) and reply to the ones that need replying to while serving customers. And she's not going to go in and do it in her own time and not get paid for it. Mum's opinion is that if it's important people can phone her! However the higher people think that because mum doesn't use her emails she can't use her emails so arranged for her to have a lesson. But the lesson was a complete waste of time. The email programme my mum has to use looked different to the one that the teacher used, so she didn't know what she was doing! My mum hasn't had anything to do with her emails for a couple of years now so she had 1500 unwanted emails to reply to. Between them they couldn't find a way to delete them all so the teacher made my mum delete them one-by-one and then delete them one-by-one from the deleted items folder! And that was the lesson over because that took a couple of hours! How ridiculous. I think my mum is attempting to learn the basics of her emails now because there's a qualification she wants to get but she'll need to use emails to get it.
When my mum got back we popped round to the local shop and the village butchers together. We couldn't believe that the butchers had no free range chicken! So we didn't get any chicken for them - mum changed the meal we were going to have for tea and based it around ham instead of chicken. If we'd have wanted free range chicken we would have had to drive into town to go to a supermarket. I thought it was ridiculous that the village butchers had no free range chicken, I think I might write a letter to them about it - it's on my list of things to do.
That evening Chris and Sophie popped round again and I spoke to Lizzy on the phone to confirm Sat.
On Thur 22nd April I attended my first physio appt at Hosp H. I was very nervous beforehand in case I had another physio who knew nothing about ME but it went much better than I expected. The physio I saw knew a lot about ME and was very easy to talk to. We talked about the importance of pacing (a technique for managing energy levels in ME). It sounds like her idea of pacing would be for me to work out my baseline for various activities (how much I can do comfortably) and then try to gradually increase that. She gave me an activity diary to fill out for a week (which I've already done) and asked me to find my walking baseline by timing how long I can walk for on a good day, an ok day and a bad day and then averaging the times out. I did try this once on an ok day but found I could just keep walking until I got to where I was going. I recorded when my legs felt more tired though and would have recorded when my heels started hurting but they were fine that day. I'll show that and the activity diary to my physio when I see her again on Wed 12th May. I also mentioned the pain I'm getting in my feet due to plantar fasciitis so she said that she'll have a look at my feet next time for me.
After my physio appt I met mum on a bench outside the hosp where she'd struck up conversation with a stranger. Hehe. Then we had our packed lunches in the hospital quadrangle, which brought back some memories of spending time there when I was younger. After lunch we went to visit my Nan who at this point hoped to be discharged the following day. She hadn't had an xray as the doctors had decided that she didn't have a broken rib. I think that they thought that her feeling ill had just been related to her heart problem. That evening Chris popped round.
I didn't go out on Fri 23rd April but had a busy morning wrapping some presents for friends. It was Claire's birthday the following Mon (26th April), but she was coming round that evening so I wanted to be able to give her her wrapped presents then. I bought Claire the Radio Times exclusive Doctor Who book and 2 DVDs (Speed and Memoirs of a Geisha). I also wrapped up the doll we'd bought for Mia's 4th birthday. It isn't her birthday until this Thur (6th May), but because her and Lizzy were coming round the following day we wanted to give Lizzy Mia's present then. That afternoon I decluttered and tidied my room a little bit and then Claire came round in the evening.
On Sat 24th April my Nan was discharged from hospital and dad helped her settle back at home in her flat :) Lizzy and Mia came round about lunchtime to spend the afternoon with us. It was a lovely warm sunny day so we sat out in the garden and I had to get changed out of my poloneck and into a t-shirt! We chatted a lot, went to a local jumble sale (where I bought the Joseph soundtrack on CD and A Series of Unfortunate Events audiobook for 25p each) and had a BBQ for tea. Me and Lizzy also played on my Wii together but Mia decided she wanted to play too so that was good fun :) I asked Lizzy to record Holly's Battlefront prog when it was on TV again a little while ago and write it to DVD for me, so when she came round she bought 5 DVDs each with a copy of the programme on :) Lizzy also lent me some short story books that she thought I could try because I can't read novels at the moment. I've only tried one so far but I managed to read it :)
On the morn of Sun 25th April lots of old Mr Gumpy style cars came driving down our road. Mum sat out on the front bench and waved to each of them but she often didn't get a response from the snooty drivers. Mum thought she saw about 70 in total. We only live in a little village so this was quite intriguing! Mum heard from someone that they were going to a posh house in the next village (not really sure why), so we had a walk there to look for the cars. Unfortunately they'd all left by this point - they must have gone a different way as they didn't go back past our house. Then we walked to the village bowls club where dad was playing bowls. We stopped and chatted to people there for about an hour. I had no idea who most of the people were but everyone seemed to know me and everything about my health too! Thanks mum - she tells everyone everything whereas I like to be a bit more private! I wanted a drink there but they didn't have any milk or apple juice. They only had J2Os (which I think would be too strong for me), fizzy drinks (yuk) and alcoholic drinks.
I heard from Becky that the Telegraph were giving away Dr Who audiobooks. I'd missed Sat's because I didn't know at that time but wandered round to the local shop on Sun to have a look. The Sun Telegraph only had half of the audiobook (the second half would be in Mon's paper) and cost almost £2 so I decided against it. I'm sure they'll turn up at carboot sales and in charity shops soon.
On the morn of Mon 26th April I phoned Barnardo's to see if they had anything for me to do if I went in that afternoon. Usually the manager (who I know) answers the phone, but she wasn't in that day so the deputy manager answered the phone instead. She had no idea who I was so had to go off to ask if anyone else had heard of me! Then when she got back to the phone after speaking to someone else she said "Does you mum bring you in?". I'd prefer not to be known as the volunteer who's mum brings her in! Then I was told that there was no work for me that day.
Me and mum went into town anyway. On the way we went via someone's house to pick up a Doctor Who DVD (Utopia from series 3) that they had been offering on Freecycle and I'd got. We went into all the usual charity shops. In a charity shop I nearly bought the Blue Planet DVD boxset for £5 but I left it to think about it and when I went back for it it had been sold. Never mind. I bought 3 Agatha Christie audio books in one charity shop for 75p each and bought both parts of a Dr Who audiobook called The Stone Rose (which had originally been free with the Radio Times) for 50p in another charity shop. Me and mum stopped for drinks in a cafe, but again I didn't have much luck with drinks. They couldn't sell drinks of milk and didn't have any clear apple juice so I had cloudy apple juice instead (which I don't like as much). Me and mum did the crossword while we had our drinks. Then we called in at 2 supermarkets before heading home.
Once we got back to the village I called in at the surgery to pick up some tablets I'd ordered. I also found out that a new suncream had been ordered for me.
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 :)
Friday, 30 April 2010
Getting up to date with April - part 1 (health)
I'm sorry I've left it so long to update, I just seem to have had a really busy couple of weeks. Getting up to date will take a few updates so I've decided that starting from tonight, each evening I'm going to type up some of my notes for a set amount of time and then post up what I've written. This way hopefully it won't be too daunting for me and won't be too long for you to read either. Fingers crossed! So part 2 will hopefully be up tomorrow evening.
I'm not sure where to start, hehe. Think I'll do a bit about my health first :)
After I last emailed my dieticians my weight, as I said in a past blog update they said that I could now start weighing myself monthly. I was a bit concerned about how much weight I could potentially lose in a month, so agreed to that but decided to weigh myself fortnightly at home. On Tue 20th April I weighed myself and my weight had risen 0.4kg in a fortnight up to 53.7kg :) Next Tue (4th May) I'll weigh myself again and email my weight to my dieticians.
I had to chase up Hosp B about my Tac level, but when I did I was told that it was 6.9, which is perfect as my target Tac level is 5 to 8. That'll be rechecked with the rest of my bloods at the start of June. I also received a Tac delivery from the homecare company that supply me with it, so I've got plenty now.
I've still not heard back from S, the tx co-ordinator at Hosp A. I'm meant to be completing my transition on 7th June, which is now just 5 and a half weeks away, and yet nothing more has been sorted since my last clinic (8 and a half weeks ago) and the lack of communication from the team at Hosp A is more of a concern than it's ever been! Following the last transition clinic at the start of March, S asked me to email her about how everything currently works under Hosp B. I sent that email on 22nd March and on 23rd March S replied. She said that everything looked similar to how it'll work at Hosp A so she thought transition would be simple. She then said that she would be away for a week from the following day but would be in touch when she got back. Since then I've heard nothing. I sent S an email on 20th April just saying that I hoped she'd had a nice week off and a lovely Easter. So not really chasing her up, just reminding her that I'm here. She's not replied, so within the next few days I'm going to send her a more specific email asking for a reply to my email from 22nd March. This is not helping my confidence in the transition!
At my transition clinic in March I asked my consultant for another referral to the gynaecologist there. I saw her previously but at that point everything was fine so she said she didn't need to see me again. I'm currently taking a form of the Pill called Cerazette because I was diagnosed with an ovarian cyst (using just an ultrasound scan) in Dec 2007 after being admitted to hospital monthly for a few months with intense pains that I required IV Morphine for. I was started on the Pill after that and haven't had the pains since. After I started on the Pill my periods continued to be very heavy (they always had been) and became more irregular. After talking to my GP about this he recommended doubling my dose of the Pill which he said would stop my periods, so I did this. It has stopped my periods for the most part but in Feb I was on my period for 3 weeks of the month and I've been surprised with one or two more random periods since then. So hopefully the gynaecologist will have some suggestions. I received an appt letter a couple of weeks ago for an appt on a Tue in June. My mum works on Tues' but Chris said him or Sophie will be able to give me a lift.
My tummy pains do seem to have improved since starting on the Spasmonal and Amitriptyline that I was prescribed at my last clinic. I'm still getting them and they're still very painful some days, but I think generally they're slightly less infrequent and slightly less painful. I gave up taking the Spasmonal about a week ago because from accidentally missing a few doses I realised it wasn't doing anything. I'm continuing with the Amitriptyline though and will talk to my consultant at Hosp A about it when I see him again in May. It was also hoped that the Amitriptyline would help my nocturnalism but it hasn't and I'm still as nocturnal as ever. And no matter how late I get to bed I always lie there for an hour or so before falling asleep.
From last night til this afternoon I felt constantly dizzy which is something that's never happened to me before. It was especially bad when I was in bed trying to get to sleep last night, it felt like I was moving. I have no idea why it happened but hopefully it wont come back again, fingers crossed.
My heels have been playing up a lot recently and the heel cushions and arch supports I bought for my shoes don't appear to be making any difference at all. They're often very painful when I've done a little bit of walking, though not always. And sometimes they're painful for no reason at all. But I had a physio appt last week (which I'll write more about later in another update) and the physio I saw said that she'll have a look at my feet when I see her again in a couple of weeks. I really hope she'll have some suggestions.
Although it's lovely to see some sun and not be cold all the time my body doesn't seem to react very well to the heat at all. When I'm out on a warm or hot day I often feel very lethargic, headachy and generally quite ill. But if it's cool or cold I'm constantly freezing. I can't win! :P I wore loads of layers over the winter but over the last few weeks I've gradually lost a few of them. I'm now no longer wearing leggings under my jeans or t-shirts over my polonecks :) I am still in polonecks though and still wearing vests for now :P
I've had my ears pierced for about 8 years now and my piercings have always been fine, I've never had any problems at all - up til now. Over the last couple of months my piercings have got very sore after wearing some earrings - not infected, just sore. I've tried wearing different earrings, including some that I was quite sure were gold, but my ears are still getting sore. I've had no earrings in for the last week or so because it seems that's all I can do at the mo. I'm going to try to find some that I'm certain are gold and see how they go.
My energy levels and levels of exhaustion have been up and down as usual. Surprisingly I coped quite well with my hectic fortnight, but did have some bad days.
I'll blog again tomorrow :)
I'm not sure where to start, hehe. Think I'll do a bit about my health first :)
After I last emailed my dieticians my weight, as I said in a past blog update they said that I could now start weighing myself monthly. I was a bit concerned about how much weight I could potentially lose in a month, so agreed to that but decided to weigh myself fortnightly at home. On Tue 20th April I weighed myself and my weight had risen 0.4kg in a fortnight up to 53.7kg :) Next Tue (4th May) I'll weigh myself again and email my weight to my dieticians.
I had to chase up Hosp B about my Tac level, but when I did I was told that it was 6.9, which is perfect as my target Tac level is 5 to 8. That'll be rechecked with the rest of my bloods at the start of June. I also received a Tac delivery from the homecare company that supply me with it, so I've got plenty now.
I've still not heard back from S, the tx co-ordinator at Hosp A. I'm meant to be completing my transition on 7th June, which is now just 5 and a half weeks away, and yet nothing more has been sorted since my last clinic (8 and a half weeks ago) and the lack of communication from the team at Hosp A is more of a concern than it's ever been! Following the last transition clinic at the start of March, S asked me to email her about how everything currently works under Hosp B. I sent that email on 22nd March and on 23rd March S replied. She said that everything looked similar to how it'll work at Hosp A so she thought transition would be simple. She then said that she would be away for a week from the following day but would be in touch when she got back. Since then I've heard nothing. I sent S an email on 20th April just saying that I hoped she'd had a nice week off and a lovely Easter. So not really chasing her up, just reminding her that I'm here. She's not replied, so within the next few days I'm going to send her a more specific email asking for a reply to my email from 22nd March. This is not helping my confidence in the transition!
At my transition clinic in March I asked my consultant for another referral to the gynaecologist there. I saw her previously but at that point everything was fine so she said she didn't need to see me again. I'm currently taking a form of the Pill called Cerazette because I was diagnosed with an ovarian cyst (using just an ultrasound scan) in Dec 2007 after being admitted to hospital monthly for a few months with intense pains that I required IV Morphine for. I was started on the Pill after that and haven't had the pains since. After I started on the Pill my periods continued to be very heavy (they always had been) and became more irregular. After talking to my GP about this he recommended doubling my dose of the Pill which he said would stop my periods, so I did this. It has stopped my periods for the most part but in Feb I was on my period for 3 weeks of the month and I've been surprised with one or two more random periods since then. So hopefully the gynaecologist will have some suggestions. I received an appt letter a couple of weeks ago for an appt on a Tue in June. My mum works on Tues' but Chris said him or Sophie will be able to give me a lift.
My tummy pains do seem to have improved since starting on the Spasmonal and Amitriptyline that I was prescribed at my last clinic. I'm still getting them and they're still very painful some days, but I think generally they're slightly less infrequent and slightly less painful. I gave up taking the Spasmonal about a week ago because from accidentally missing a few doses I realised it wasn't doing anything. I'm continuing with the Amitriptyline though and will talk to my consultant at Hosp A about it when I see him again in May. It was also hoped that the Amitriptyline would help my nocturnalism but it hasn't and I'm still as nocturnal as ever. And no matter how late I get to bed I always lie there for an hour or so before falling asleep.
From last night til this afternoon I felt constantly dizzy which is something that's never happened to me before. It was especially bad when I was in bed trying to get to sleep last night, it felt like I was moving. I have no idea why it happened but hopefully it wont come back again, fingers crossed.
My heels have been playing up a lot recently and the heel cushions and arch supports I bought for my shoes don't appear to be making any difference at all. They're often very painful when I've done a little bit of walking, though not always. And sometimes they're painful for no reason at all. But I had a physio appt last week (which I'll write more about later in another update) and the physio I saw said that she'll have a look at my feet when I see her again in a couple of weeks. I really hope she'll have some suggestions.
Although it's lovely to see some sun and not be cold all the time my body doesn't seem to react very well to the heat at all. When I'm out on a warm or hot day I often feel very lethargic, headachy and generally quite ill. But if it's cool or cold I'm constantly freezing. I can't win! :P I wore loads of layers over the winter but over the last few weeks I've gradually lost a few of them. I'm now no longer wearing leggings under my jeans or t-shirts over my polonecks :) I am still in polonecks though and still wearing vests for now :P
I've had my ears pierced for about 8 years now and my piercings have always been fine, I've never had any problems at all - up til now. Over the last couple of months my piercings have got very sore after wearing some earrings - not infected, just sore. I've tried wearing different earrings, including some that I was quite sure were gold, but my ears are still getting sore. I've had no earrings in for the last week or so because it seems that's all I can do at the mo. I'm going to try to find some that I'm certain are gold and see how they go.
My energy levels and levels of exhaustion have been up and down as usual. Surprisingly I coped quite well with my hectic fortnight, but did have some bad days.
I'll blog again tomorrow :)
Friday, 26 March 2010
Discussion group, hair cut and Barnardo's
Sorry it's been a little while since I last updated, hopefully this update wont be too long, fingers crossed.
My tiredness and energy levels have been up and down this week. My mood has too - most of the time I've been fine but I have felt very down on a couple of occasions for no obvious reason. On Sat night my legs were sore which is unusual for me. I started Amitriptyline on Sat night after stopping Spasmonal because it didn't seem to be helping my tummy pains at all. My tummy pains seem to have been different this week than usual and maybe slightly better, but not dramatically better. I'll keep going with the Amitriptyline and see what happens. My nocturnalism seems to have been better some nights this week (but not all) and I seem to have been getting to sleep quicker once I've got into bed, which may be due to the Amitriptyline.
One day this week I received a write-up of my last clinic in the post from Hosp A. The letter has been written to my GP but I received a copy too. On the envelope and in the letter Hosp A got my house number wrong. Hosp B have always had my postcode wrong! :P Most of the letter was accurate but I wasn't very happy with my consultant from Hosp A saying something along the lines of 'It was agreed that Molly's fatigue is probably not due to M.E. but is probably transplant related' That was not agreed, that was just his view!
I finally got my dad to check my email to S, the transplant co-ordinator from Hosp A, and after finalising it I sent it. I received a brief response from S saying that she'd be in touch again after her week off, but the follow up at Hosp B sounds very similar to Hosp A so she thinks my transition should be simple. I wish I was that confident!
On Tue morn my weight was up to 53.3kg. It was 52.1kg a fortnight ago (when I last emailed my dietician at Hosp B) and 52.8kg last week (when I just did my weight for myself). I emailed both of my dieticians to let them know. My dietician from Hosp B was very impressed and I also got a nice reply from my dietician at Hosp A.
On Sun morn me and mum went out to the local carboot sale. We both found it quite disappointing so hopefully it'll be better next time. I didn't buy any DVDs, just one PS2 game.
On Mon I felt quite tired so didn't do much. I wrote a letter to my AYME buddy Kate and went round to the post box to send that and also to the surgery to put in an order for some more high calorie puddings. I didn't feel up to going to Alf's parents' evening with my mum and dad but I'm sure there'll be more chances for me to see his college. That evening dad went away to stay in the fishing lodge that his sister rents for a couple of days while he's on annual leave from work.
On Tue I walked round to the local shop to buy the new Radio Times and some milk and to post a rental DVD back. That morning I phoned Barnardo's to chase up an application form and the manager answered the phone. She asked if I'd been in for an interview so I told her that I'd just been asked to fill out an application form. She said she'd just got back from a holiday but she'd like to see me for an interview, so could I pop in at some point on Wed or Thur. Eeek!
On Tue aft Chris and Soph came round to compare PS games, but Sophie forgot her 4. She told me what they were though and I wouldn't have been interested in borrowing any of them. Chris and Sophie are both quite busy at the mo but they might borrow some of my games another time. We played on my PS2 together which was fun :) After they'd been round for a while I got very tired so went up to my bedroom to relax while they used our Internet because they've not managed to get the Internet set up at their new house yet. Chris did some job hunting. He's still got his current job but they've just lost some housing benefit I think so are struggling to afford the rent on their house. I'm sure they wouldn't have any problems though if they stopped spending so much on things like alcohol, cigarettes, going to the pub etc! So Chris is looking for a job where he can earn more money, but dad doesn't think he'll be able to get a more highly paid job in what he wants to do (bar and restaurant work).
On Tue eve I didn't feel too tired so went to the teenage discussion group in the village. This time rather than being held in a room in the church it was held at B's house because she couldn't get anyone to babysit for her 2 young daughters now we've changed the day. There weren't many of us there - just A and B who run it, me, my friend V and another girl we both know, K. V has told me that she can't stand K, but I thought she did very well at hiding that. The discussion was based around another 10 min video, but it wasn't quite so religious this time. I got a bit frustrated when I was trying to be 'normal' and A briefly mentioned my medical history. I also found it frustrating when B was talking about how her sister had ME and had recovered really quickly when she stopped multitasking and watching TV and I felt like it was pointed at me (I'm sure A had told B about me having ME), but I'm sure nothing was meant by it. I'm really pleased that I didn't say anything either time. The rest of the evening was good though :)
I had quite a busy day on Wed. In the morning I went to my local hair salon for an appt with my normal hairdresser (who has cut my hair since I was tiny). My hair really needed trimming but I'd kept putting it off because I don't like having to be sociable at the hairdressers :P I asked my hairdresser's advice on stopping my hair from looking so thin (I'm sure it's a side effect of some of my medication but it seems to come and go despite the doses of my medications not changing). She said she could see where it went thinner, so the best solution would be to cut my hair there, so I agreed. I don't like other people washing my hair so just went for a spray cut. However when she sprayed my hair it went wildly wavy and stuck out at all angles :P Luckily she managed to tame it a bit before I left the salon. I had 2 or 3 inches cut off which is more than I'd usually have, but my hair still ties up. And I like it, it looks much thicker now and is easier to wash, brush and care for now the split ends have gone.
On Wed aft I went to Barnardo's in town to see the manager. She seemed nice and younger than I'd expected from hearing her on the phone. It wasn't really an interview, just a short informal chat. She asked me if I'd ever done any volunteering like this before (which I haven't) and asked whether I'd like to work out the front or in the back, so I told her about the conversation I'd had with someone on the phone who had suggested that I work out the back so I'm under no pressure to go in unless I feel up to it. She gave me an application form and asked me to return next Thur to be shown around, shown how stuff works and what I'll be doing.
Then I tried to trade in my 5 unwanted PS2 games (there might be more I don't want when I've played them all a bit more, but they're the only ones I'm certain I don't want at the mo) and the shop said they'd definitely be interested and although price would depend on the actual games and the condition of them they would be able to offer me a couple of pounds for each. But they can only buy a certain value of games and consoles each day and they'd already bought their limit that day. So I'll have to go back a bit earlier another day and hope that they wont already have bought their limit. In the charity shops I bought a PS1 game and 2 DVDs (Burn After Reading and He's Just Not That Into You) for £1.50 each. Then I helped mum with a big Tesco shop where I bought The Hangover on DVD for £5.
Yesterday I helped mum with a quick Tesco shop but didn't buy anything myself. Then we called in at the cinema where we pre-booked tickets to see The Blind Side tomorrow. We ate our sandwiches for lunch in the car on our way to visit my Nan. It was lovely to see her and she seemed in good spirits :) But I became very tired while we were there so don't think I was very good company. On the way home we called in at a local shop to buy some croissants and I posted a rental DVD back. I was very tired that evening so relaxed for a while before doing a crossword with my mum which we both enjoyed. Then dad got back from his fishing break which he seemed to have enjoyed. After dad had been back a little while he said there was something different about me so asked if I'd got new glasses. When I told him I hadn't he then realised I'd had my hair cut!
One day this week my mum's friend called round with a big fleecy jacket that she didn't want any more so she wondered if any of us wanted it. It's mine now and I love it, it's so warm :)
On Wed when I'd been telling my hairdresser about Alf's college course and his love of exotic animals she told me about a exotic pet shop that she'd accidentally stumbled upon in a neighbouring village. I'd never heard of it before, but I told Alf who looked it up on the Internet last night. He thought it looked really good so went to have a look at it with dad this afternoon. They don't have any job vacancies for Alf or any chance for him to volunteer but they've taken his details and he will be able to do his work experience there. It's good that it's so close, he'll be able to walk or cycle there across the fields.
This morning I had a shower and it got me thinking. Although I find showering quite tiring at the moment, it's now much easier than it used to be for me because I don't have to spend time before showering waterproofing a central line or spend time after showering changing an illeostomy bag.
I'm having a very down day today :( Firstly Claire text mum to cancel this evening. She was going to come round for tea and bring her mum with her who we've never met before, but she's cancelled and I don't know why. However they're still going to my mum's knitting group, but I don't attend that, so I wont get to see Claire tonight or meet her mum :(
Then I overheard Alf talking to my parents about the possibility of him getting a pet. I've wanted a pet for years and my parents have always said no, so I was surprised that they were thinking about letting Alf have one. So I asked mum if I could have a pet and she said no, which I thought was very unfair so I got quite upset. Mum didn't seem to understand that I like animals as much as Alf and how much I want a pet. Alf isn't going to be getting a pet in the near future but if he makes a big effort with his college work and gets good grades then he might be allowed a chameleon or some other kind of reptile or amphibian in a tank in his room, which he'll have to take full responsibility for. At the end of the conversation it looked more like if Alf is allowed a pet I might be allowed one too, but nothing has been decided yet. If I am allowed a pet then it will have to live in my bedroom (so not a dog or cat) and be totally my responsibility. However due to my transplant I wouldn't be able to have a reptile or a bird, so I think it'll have to be a small mammal. And I'll have to get my consultant's permission too. My consultant at Hosp B has always said no to pets (although I do know other small bowel transplant recipients who have pets), but I think my consultant at Hosp A might say yes ;)
Tomorrow afternoon me and mum are going to the cinema to see The Blind Side which I'm really looking forward to as I've been waiting for the film to be released in UK cinemas for ages! And on Sun if the weather is good we'll go and browse round the local carboot sale. My only plan for next week at the moment is going to Barnardo's on Thur (and maybe getting into town a bit early to try to trade my unwanted PS2 games in), but I'm sure more things will crop up, they always do.
I've played on my PS2 a bit more since my last update. On Sat I played on Sonic Heroes a bit more on my own and tried out World Rally Championship 3 with dad. It was his choice but we both had a lot of laughs playing it because we were both appalling! I was marginally better though, so beat him :) On Sun I tried out a few games - Who Wants to be a Millionaire (just like the TV prog), Tom Clancy's Splinter Cell (not sure if it's my kind of game, so need to spend a bit more time playing it), Lord of the Rings: The Return of the King (I expected it to be some exploring and some fighting but it is all fighting so I didn't enjoy it), The Italian Job: LA Heist (I am awful at racing games, so that wasn't very successful!) Tony Hawk's Project 8 (bashing the buttons doesn't work, I need to spend some time learning and practising) and SSX3 (same thoughts as Tony Hawk's). On Tue I tried out the multiplayer options on Sonic Heroes with Chris and Sophie and then played Who Wants to be a Millionaire with Sophie. And on Tue I also tried out a new game, Lemmings for the PS1, which I loved (it's just classic Lemmings), but I got really frustrated when it would save and even complained to the eBay seller who I bought it from. After Googling the problem I discovered that you can't save PS1 games onto a PS2 memory card, but instead need a PS1 memory card. So I apologised to the person who sold me Lemmings and bought a PS1 memory card from eBay which I'm now waiting to be delivered. At the moment Alf is trying out my Need for Speed game.
This week I bought a PS2 game called Canis Canem Edit (aka Bully) from the carboot sale and a PS1 game called Jak and Daxter from a charity shop in town. I've not tried either of them out yet though. I've bought some PS2 games from eBay such as Escape from Monkey Island and Sonic Mega Collection. Escape from Monkey Island has arrived in the post already along with Need For Speed Most Wanted which I bought last week but I've not tried either of them out yet. I'm waiting for Sonic Mega Collection to be delivered. The PS1 games I've bought from eBay are Lemmings and Oh No More Lemmings and Crash Bandicoot 3, which have already arrived though I've not tried out Crash Bandicoot 3 yet, and Croc 1, which I'm waiting for. On Wed eve I decided I'd stop buying PS games from eBay while I tried out the ones I'd got but that didn't even last 24 hours because yesterday evening I couldn't resist buying the PS1 game Spyro Gateway to Glimmer from eBay :P But I checked my bank balance online the other day and it's looking good so I'm ok to buy a few games until the novelty of the PS2 wears off :)
A few days ago the next handheld Nintendo console (which will come after the DS series) was announced. The current name for it is 3DS, but I'm sure that'll change before it's launched. It will incorporate 3D without the user needing to wear special 3D glasses. You can read more about it here. I think it sounds quite exciting.
I've only watched one film since my last update which was called Fish Tank. It wasn't a cheerful film, but was very well made and acted and definitely thought-provoking. I'd recommend it if you want a gritty realistic film that makes you think. On the DVD was also a short film called Wasp that had been the inspiration for Fish Tank so I watched that too.
Since my last update I've discovered the BBC series Outnumbered as I rented the first series on DVD from Tesco DVD rental. I'd seen odd parts of the special episodes for Comic Relief and Sports Relief before so wanted to see more. This week I've watched all 6 episodes of series 1 (plus the cast interviews on the DVD) and I love it :D The first disc of the second series arrived this morning from rental and the second disc is in the post to me, so I'm looking forward to watching series 2 before series 3 starts a week tomorrow. This week I've also begun rewatching series 2 of Ashes to Ashes in preparation series 3 starting on TV next Fri. So far I've rewatched the first 3 episodes of series 2. I can't wait for series 3 :D You can see the BBC trailer here.
I seem to have watched quite a lot on TV, from the hard disc recorder and on online TV catch up services since my last update. I watched the last episode in the current series (and the last ever with Jonathan Ross of Film 2010, 2 episodes of Tracy Beaker Returns, the latest episode of Married Single Other which was very sad (the first 3 episodes were light-hearted and funny, but the next 2 episodes were very moving and a depressing. I wonder how it'll conclude on Mon), a really interesting documentary about refugees from Burma moving to the UK called True Stories: Moving to Mars (I was especially interested in this because Lizzy's husband is from Burma), the first episode in the new series of Children's Hospital, the latest episode of One Born Every Minute, both parts of an interesting BBC programme called Famous Rich and Jobless, 4Music: 4Play: Marina and the Diamonds (It's on the hard disc recorder and I've watched it a few times now), a Neil Sidaka prog with mum, Fri Night with Jonathan Ross featuring Lady Gaga (I thought watching it might help me to understand her but it didn't!), Boyzone Tribute to Stephen Gately (I only watched because I heard Mika had sung on it), Alexandra Burke performing her next single, All Night Long, on Dancing on Ice and Pixie Lott performing her latest single, Gravity, on the Alan Titchmarsh Show. I've now watched everything that I wanted to on the hard disc recorder in preparation for reformatting it, but there are still a few programmes on it that mum wants to watch.
I've had 2 songs stuck in my head a lot since my last update. I got Caravan of Love stuck in head after it was sung on Married Single Other and then again after I heard it on the radio a few days later. I don't mind that song though. More annoying was getting Telephone stuck in my head. Usually when the video comes on the music channels I flick to another channel but I thought I'd watch it through - big mistake! I don't like the song but it's very very catchy! While I was looking for that on Youtube I spotted a link on the side of the page to a Lady Gaga video I was sure I'd not seen before. Although I don't really like Lady Gaga I thought I'd have a look because her videos are always really weird, but to my surprise this one is quite normal!
I'm currently listening to The Family Jewels by Marina and the Diamonds to cheer me up. It's definitely my favourite album at the moment.
Mika was interviewed by Jools Holland on Radio 2 on Mon eve but I missed it on the radio so listened to it on iPlayer last night instead. You can listen to it here but only til Mon (Mika comes in 24 mins into the recording). Mika's latest single Kick Ass (the theme tune to the film of the same title) will be released on Mon and I'll certainly be buying it.
My tiredness and energy levels have been up and down this week. My mood has too - most of the time I've been fine but I have felt very down on a couple of occasions for no obvious reason. On Sat night my legs were sore which is unusual for me. I started Amitriptyline on Sat night after stopping Spasmonal because it didn't seem to be helping my tummy pains at all. My tummy pains seem to have been different this week than usual and maybe slightly better, but not dramatically better. I'll keep going with the Amitriptyline and see what happens. My nocturnalism seems to have been better some nights this week (but not all) and I seem to have been getting to sleep quicker once I've got into bed, which may be due to the Amitriptyline.
One day this week I received a write-up of my last clinic in the post from Hosp A. The letter has been written to my GP but I received a copy too. On the envelope and in the letter Hosp A got my house number wrong. Hosp B have always had my postcode wrong! :P Most of the letter was accurate but I wasn't very happy with my consultant from Hosp A saying something along the lines of 'It was agreed that Molly's fatigue is probably not due to M.E. but is probably transplant related' That was not agreed, that was just his view!
I finally got my dad to check my email to S, the transplant co-ordinator from Hosp A, and after finalising it I sent it. I received a brief response from S saying that she'd be in touch again after her week off, but the follow up at Hosp B sounds very similar to Hosp A so she thinks my transition should be simple. I wish I was that confident!
On Tue morn my weight was up to 53.3kg. It was 52.1kg a fortnight ago (when I last emailed my dietician at Hosp B) and 52.8kg last week (when I just did my weight for myself). I emailed both of my dieticians to let them know. My dietician from Hosp B was very impressed and I also got a nice reply from my dietician at Hosp A.
On Sun morn me and mum went out to the local carboot sale. We both found it quite disappointing so hopefully it'll be better next time. I didn't buy any DVDs, just one PS2 game.
On Mon I felt quite tired so didn't do much. I wrote a letter to my AYME buddy Kate and went round to the post box to send that and also to the surgery to put in an order for some more high calorie puddings. I didn't feel up to going to Alf's parents' evening with my mum and dad but I'm sure there'll be more chances for me to see his college. That evening dad went away to stay in the fishing lodge that his sister rents for a couple of days while he's on annual leave from work.
On Tue I walked round to the local shop to buy the new Radio Times and some milk and to post a rental DVD back. That morning I phoned Barnardo's to chase up an application form and the manager answered the phone. She asked if I'd been in for an interview so I told her that I'd just been asked to fill out an application form. She said she'd just got back from a holiday but she'd like to see me for an interview, so could I pop in at some point on Wed or Thur. Eeek!
On Tue aft Chris and Soph came round to compare PS games, but Sophie forgot her 4. She told me what they were though and I wouldn't have been interested in borrowing any of them. Chris and Sophie are both quite busy at the mo but they might borrow some of my games another time. We played on my PS2 together which was fun :) After they'd been round for a while I got very tired so went up to my bedroom to relax while they used our Internet because they've not managed to get the Internet set up at their new house yet. Chris did some job hunting. He's still got his current job but they've just lost some housing benefit I think so are struggling to afford the rent on their house. I'm sure they wouldn't have any problems though if they stopped spending so much on things like alcohol, cigarettes, going to the pub etc! So Chris is looking for a job where he can earn more money, but dad doesn't think he'll be able to get a more highly paid job in what he wants to do (bar and restaurant work).
On Tue eve I didn't feel too tired so went to the teenage discussion group in the village. This time rather than being held in a room in the church it was held at B's house because she couldn't get anyone to babysit for her 2 young daughters now we've changed the day. There weren't many of us there - just A and B who run it, me, my friend V and another girl we both know, K. V has told me that she can't stand K, but I thought she did very well at hiding that. The discussion was based around another 10 min video, but it wasn't quite so religious this time. I got a bit frustrated when I was trying to be 'normal' and A briefly mentioned my medical history. I also found it frustrating when B was talking about how her sister had ME and had recovered really quickly when she stopped multitasking and watching TV and I felt like it was pointed at me (I'm sure A had told B about me having ME), but I'm sure nothing was meant by it. I'm really pleased that I didn't say anything either time. The rest of the evening was good though :)
I had quite a busy day on Wed. In the morning I went to my local hair salon for an appt with my normal hairdresser (who has cut my hair since I was tiny). My hair really needed trimming but I'd kept putting it off because I don't like having to be sociable at the hairdressers :P I asked my hairdresser's advice on stopping my hair from looking so thin (I'm sure it's a side effect of some of my medication but it seems to come and go despite the doses of my medications not changing). She said she could see where it went thinner, so the best solution would be to cut my hair there, so I agreed. I don't like other people washing my hair so just went for a spray cut. However when she sprayed my hair it went wildly wavy and stuck out at all angles :P Luckily she managed to tame it a bit before I left the salon. I had 2 or 3 inches cut off which is more than I'd usually have, but my hair still ties up. And I like it, it looks much thicker now and is easier to wash, brush and care for now the split ends have gone.
On Wed aft I went to Barnardo's in town to see the manager. She seemed nice and younger than I'd expected from hearing her on the phone. It wasn't really an interview, just a short informal chat. She asked me if I'd ever done any volunteering like this before (which I haven't) and asked whether I'd like to work out the front or in the back, so I told her about the conversation I'd had with someone on the phone who had suggested that I work out the back so I'm under no pressure to go in unless I feel up to it. She gave me an application form and asked me to return next Thur to be shown around, shown how stuff works and what I'll be doing.
Then I tried to trade in my 5 unwanted PS2 games (there might be more I don't want when I've played them all a bit more, but they're the only ones I'm certain I don't want at the mo) and the shop said they'd definitely be interested and although price would depend on the actual games and the condition of them they would be able to offer me a couple of pounds for each. But they can only buy a certain value of games and consoles each day and they'd already bought their limit that day. So I'll have to go back a bit earlier another day and hope that they wont already have bought their limit. In the charity shops I bought a PS1 game and 2 DVDs (Burn After Reading and He's Just Not That Into You) for £1.50 each. Then I helped mum with a big Tesco shop where I bought The Hangover on DVD for £5.
Yesterday I helped mum with a quick Tesco shop but didn't buy anything myself. Then we called in at the cinema where we pre-booked tickets to see The Blind Side tomorrow. We ate our sandwiches for lunch in the car on our way to visit my Nan. It was lovely to see her and she seemed in good spirits :) But I became very tired while we were there so don't think I was very good company. On the way home we called in at a local shop to buy some croissants and I posted a rental DVD back. I was very tired that evening so relaxed for a while before doing a crossword with my mum which we both enjoyed. Then dad got back from his fishing break which he seemed to have enjoyed. After dad had been back a little while he said there was something different about me so asked if I'd got new glasses. When I told him I hadn't he then realised I'd had my hair cut!
One day this week my mum's friend called round with a big fleecy jacket that she didn't want any more so she wondered if any of us wanted it. It's mine now and I love it, it's so warm :)
On Wed when I'd been telling my hairdresser about Alf's college course and his love of exotic animals she told me about a exotic pet shop that she'd accidentally stumbled upon in a neighbouring village. I'd never heard of it before, but I told Alf who looked it up on the Internet last night. He thought it looked really good so went to have a look at it with dad this afternoon. They don't have any job vacancies for Alf or any chance for him to volunteer but they've taken his details and he will be able to do his work experience there. It's good that it's so close, he'll be able to walk or cycle there across the fields.
This morning I had a shower and it got me thinking. Although I find showering quite tiring at the moment, it's now much easier than it used to be for me because I don't have to spend time before showering waterproofing a central line or spend time after showering changing an illeostomy bag.
I'm having a very down day today :( Firstly Claire text mum to cancel this evening. She was going to come round for tea and bring her mum with her who we've never met before, but she's cancelled and I don't know why. However they're still going to my mum's knitting group, but I don't attend that, so I wont get to see Claire tonight or meet her mum :(
Then I overheard Alf talking to my parents about the possibility of him getting a pet. I've wanted a pet for years and my parents have always said no, so I was surprised that they were thinking about letting Alf have one. So I asked mum if I could have a pet and she said no, which I thought was very unfair so I got quite upset. Mum didn't seem to understand that I like animals as much as Alf and how much I want a pet. Alf isn't going to be getting a pet in the near future but if he makes a big effort with his college work and gets good grades then he might be allowed a chameleon or some other kind of reptile or amphibian in a tank in his room, which he'll have to take full responsibility for. At the end of the conversation it looked more like if Alf is allowed a pet I might be allowed one too, but nothing has been decided yet. If I am allowed a pet then it will have to live in my bedroom (so not a dog or cat) and be totally my responsibility. However due to my transplant I wouldn't be able to have a reptile or a bird, so I think it'll have to be a small mammal. And I'll have to get my consultant's permission too. My consultant at Hosp B has always said no to pets (although I do know other small bowel transplant recipients who have pets), but I think my consultant at Hosp A might say yes ;)
Tomorrow afternoon me and mum are going to the cinema to see The Blind Side which I'm really looking forward to as I've been waiting for the film to be released in UK cinemas for ages! And on Sun if the weather is good we'll go and browse round the local carboot sale. My only plan for next week at the moment is going to Barnardo's on Thur (and maybe getting into town a bit early to try to trade my unwanted PS2 games in), but I'm sure more things will crop up, they always do.
I've played on my PS2 a bit more since my last update. On Sat I played on Sonic Heroes a bit more on my own and tried out World Rally Championship 3 with dad. It was his choice but we both had a lot of laughs playing it because we were both appalling! I was marginally better though, so beat him :) On Sun I tried out a few games - Who Wants to be a Millionaire (just like the TV prog), Tom Clancy's Splinter Cell (not sure if it's my kind of game, so need to spend a bit more time playing it), Lord of the Rings: The Return of the King (I expected it to be some exploring and some fighting but it is all fighting so I didn't enjoy it), The Italian Job: LA Heist (I am awful at racing games, so that wasn't very successful!) Tony Hawk's Project 8 (bashing the buttons doesn't work, I need to spend some time learning and practising) and SSX3 (same thoughts as Tony Hawk's). On Tue I tried out the multiplayer options on Sonic Heroes with Chris and Sophie and then played Who Wants to be a Millionaire with Sophie. And on Tue I also tried out a new game, Lemmings for the PS1, which I loved (it's just classic Lemmings), but I got really frustrated when it would save and even complained to the eBay seller who I bought it from. After Googling the problem I discovered that you can't save PS1 games onto a PS2 memory card, but instead need a PS1 memory card. So I apologised to the person who sold me Lemmings and bought a PS1 memory card from eBay which I'm now waiting to be delivered. At the moment Alf is trying out my Need for Speed game.
This week I bought a PS2 game called Canis Canem Edit (aka Bully) from the carboot sale and a PS1 game called Jak and Daxter from a charity shop in town. I've not tried either of them out yet though. I've bought some PS2 games from eBay such as Escape from Monkey Island and Sonic Mega Collection. Escape from Monkey Island has arrived in the post already along with Need For Speed Most Wanted which I bought last week but I've not tried either of them out yet. I'm waiting for Sonic Mega Collection to be delivered. The PS1 games I've bought from eBay are Lemmings and Oh No More Lemmings and Crash Bandicoot 3, which have already arrived though I've not tried out Crash Bandicoot 3 yet, and Croc 1, which I'm waiting for. On Wed eve I decided I'd stop buying PS games from eBay while I tried out the ones I'd got but that didn't even last 24 hours because yesterday evening I couldn't resist buying the PS1 game Spyro Gateway to Glimmer from eBay :P But I checked my bank balance online the other day and it's looking good so I'm ok to buy a few games until the novelty of the PS2 wears off :)
A few days ago the next handheld Nintendo console (which will come after the DS series) was announced. The current name for it is 3DS, but I'm sure that'll change before it's launched. It will incorporate 3D without the user needing to wear special 3D glasses. You can read more about it here. I think it sounds quite exciting.
I've only watched one film since my last update which was called Fish Tank. It wasn't a cheerful film, but was very well made and acted and definitely thought-provoking. I'd recommend it if you want a gritty realistic film that makes you think. On the DVD was also a short film called Wasp that had been the inspiration for Fish Tank so I watched that too.
Since my last update I've discovered the BBC series Outnumbered as I rented the first series on DVD from Tesco DVD rental. I'd seen odd parts of the special episodes for Comic Relief and Sports Relief before so wanted to see more. This week I've watched all 6 episodes of series 1 (plus the cast interviews on the DVD) and I love it :D The first disc of the second series arrived this morning from rental and the second disc is in the post to me, so I'm looking forward to watching series 2 before series 3 starts a week tomorrow. This week I've also begun rewatching series 2 of Ashes to Ashes in preparation series 3 starting on TV next Fri. So far I've rewatched the first 3 episodes of series 2. I can't wait for series 3 :D You can see the BBC trailer here.
I seem to have watched quite a lot on TV, from the hard disc recorder and on online TV catch up services since my last update. I watched the last episode in the current series (and the last ever with Jonathan Ross of Film 2010, 2 episodes of Tracy Beaker Returns, the latest episode of Married Single Other which was very sad (the first 3 episodes were light-hearted and funny, but the next 2 episodes were very moving and a depressing. I wonder how it'll conclude on Mon), a really interesting documentary about refugees from Burma moving to the UK called True Stories: Moving to Mars (I was especially interested in this because Lizzy's husband is from Burma), the first episode in the new series of Children's Hospital, the latest episode of One Born Every Minute, both parts of an interesting BBC programme called Famous Rich and Jobless, 4Music: 4Play: Marina and the Diamonds (It's on the hard disc recorder and I've watched it a few times now), a Neil Sidaka prog with mum, Fri Night with Jonathan Ross featuring Lady Gaga (I thought watching it might help me to understand her but it didn't!), Boyzone Tribute to Stephen Gately (I only watched because I heard Mika had sung on it), Alexandra Burke performing her next single, All Night Long, on Dancing on Ice and Pixie Lott performing her latest single, Gravity, on the Alan Titchmarsh Show. I've now watched everything that I wanted to on the hard disc recorder in preparation for reformatting it, but there are still a few programmes on it that mum wants to watch.
I've had 2 songs stuck in my head a lot since my last update. I got Caravan of Love stuck in head after it was sung on Married Single Other and then again after I heard it on the radio a few days later. I don't mind that song though. More annoying was getting Telephone stuck in my head. Usually when the video comes on the music channels I flick to another channel but I thought I'd watch it through - big mistake! I don't like the song but it's very very catchy! While I was looking for that on Youtube I spotted a link on the side of the page to a Lady Gaga video I was sure I'd not seen before. Although I don't really like Lady Gaga I thought I'd have a look because her videos are always really weird, but to my surprise this one is quite normal!
I'm currently listening to The Family Jewels by Marina and the Diamonds to cheer me up. It's definitely my favourite album at the moment.
Mika was interviewed by Jools Holland on Radio 2 on Mon eve but I missed it on the radio so listened to it on iPlayer last night instead. You can listen to it here but only til Mon (Mika comes in 24 mins into the recording). Mika's latest single Kick Ass (the theme tune to the film of the same title) will be released on Mon and I'll certainly be buying it.
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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