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.
Showing posts with label Chris. Show all posts
Showing posts with label Chris. Show all posts
Friday, 8 October 2010
Monday, 17 May 2010
My weekend
On Fri I felt a bit more down than usual in the morning but I was ok. I discovered that my slippers were about to fall apart which is frustrating because I've not had them very long. I think that my feet are too wide for them so they've burst the stitches. I definitely need to do a clothes shop soon because all my clothes seem to be falling apart! That morn I had a chat to my parents about my rent and it's been increased slightly but the monthly amount is still manageable out of my benefits money.
That aft me and mum were going to go and see my nan, but I had bad tummy pains again so decided to stay at home while my mum went out. I don't know why my tummy pains have got a lot worse over the last few days. I did miss one dose of Amitriptyline but wouldn't have thought that would cause this. I'm only on a very small dose of Amitriptyline so am going to ask my Hosp A consultant when I see him in a couple of weeks if increasing my dose might help. My next clinic is now just 2 and a half weeks away and I'm still not happy about completing my transition then, so will let the team there know that when I see them. I'm still waiting to hear back from S about my questions relating to Tac bloods.
I was sorry to miss seeing my nan on Fri so hopefully I'll see her at some point this week. My tummy soon felt a bit better so while mum was out I watched a DVD called Jumper which I enjoyed more than I expected.
Then I heard that Ellie Goulding had announced dates for a UK tour in Oct/Nov and would be coming to a seated venue near me. I saw her supporting Little Boots last Oct but didn't know her or her music then so would love to see her again now I know more of her songs. The tickets go on pre-sale on Wed morn so I'm going to try to get some then. I'm waiting to hear from Claire about whether she'll be free to come with me and mum.
On Fri I really struggled with eating my tea. Generally I'm finding eating a bit easier at the mo but sometimes I do really struggle with it. That eve I really enjoyed watching the penultimate episode of Ashes to Ashes with my parents. I can't wait for the final episode on Fri but also really don't want it to end. Before I went to bed that night I listened to Diana Vickers' album, Songs from the Tainted Cherry Tree, and Little Boots' album, Hands. I've been listening to Diana Vickers' album a lot but that was the first time I'd listened to Little Boots' album in a while so I enjoyed that.
I didn't feel too good on Sat but I didn't feel too ill. I really struggled to get up in the morn, I was more tired than usual, my feet ached all day (not the pain I usually get but just lots of aching like I'd done too much walking the previous day, but I hadn't) and I felt quite lightheaded at one point.
Something I struggle with at the moment is wearing clean clothes. They often feel very uncomfortable for an hour or two when I first put them on, especially my jeans. I thought this was just me being weird but I've recently discovered that having oversensitive skin can actually be a symptom of ME. I don't think there's anything I can do about it though. I also find that finding new clothes that are comfortable is very difficult so I'm not looking forward to having to replace all my clothes that are starting to fall apart.
That morn I watched Embarrassing Bodies: Kids on 4OD. I was very excited to receive a text as I thought that meant my mobile was working again, but it wasn't. I had a little look at my DLA forms and I relieved that they don't look too hard to fill out as it's mostly just ticking boxes. Not sure how I fit into their categories though, so I suspect I might end up losing my DLA. I've decided that I'm going to try to get them completed and sent off before my parents and brother head off to Glastonbury in just over a month. I just need to find a time when dad can have a look at them with me.
While I wasn't feeling so good I listened to The Family Jewels by Marina and the Diamonds on my iPod. Then Chris popped round. It was nice to see him and he stayed for tea. He's going to try a different job so he was telling us about that. He currently helps to manage a restaurant that is attached to a hotel and he's always worked in bar work or catering (not actually cooking, but managing). However he's decided to go across to the hotel and work there with administration, finances and working at the reception etc. The pay is the same and it's the same hours though at more sociable times. He's interested to learn more about how the hotel works and it'll look good on his CV too. He's starting a few hotel shifts this week and then increasing them over the next couple of weeks. Hopefully it'll all go well for him. His car's broken again and isn't reparable this time. That's what happens if you buy cars from eBay! Chris also had a fiddle with my phone but had no idea what the problem was. Mum remembered that there is a Nokia repair place nearer than a T-Mobile shop so we thought about taking my phone in to be looked at there.
On Sat eve I enjoyed watching Doctor Who with my family. I thought Sat's episode was really good and very original. After that I watched the music channels for a little while and then a good film on BBC3 called Flightplan. That eve I had tummy ache, which isn't a time I usually have tummy ache. This was just an ache though rather than a pain so I managed to get to sleep ok with it.
On Sun I got up about 2/3 hours earlier than I usually would and with my parents I headed out to the annual carboot sale at my old secondary school. I was quite worried about bumping into people I knew there, but I only saw 2 and managed to avoid them seeing me :P At the carboot sale I picked up a couple of things for Claire (an old Take That annual and a Tardis tin), 3 books (the Script book of Juno because I love the film, the novel Stardust which I hope to read at some point because I recently enjoyed watching the film and a children's book by Malorie Blackman which I used to enjoy reading) and 4 DVDs (Beaches, The Magic Bubble, Down with Love and Aardman Classics). When I met up with my parents at the end mum showed me a Nokia 3310 that she'd picked up to me. I've been using it since then and it's fantastic to be able to phone and text again :D The only thing I miss with using an older phone is the camera, but apart from that it does everything I need and should last me til Chris passes his iPhone onto me at the end of Sept.
I felt a bit odd that afternoon which I think was probably due to getting up much earlier than usual. And I also had more dizzy spells than I had been having for the past week or two. Hopefully my dizziness will clear up completely soon, fingers crossed. When I got home from the carboot sale I was really pleased to hear that Tori had received her transplant call. Since then she's had her transplant and it sounds like she's been making really good progress. I don't know Tori personally but have been following her blog for a while now.
I enjoyed doing a couple of little jigsaws and then sorted through the HDR and deleted some recordings. While I was doing that I rewatched the first part of the first episode of the current series of Doctor Who with mum, watched last week's Friday Night with Jonathan Ross (to see Alexandra Burke being interviewed and Ellie Goulding performing) and watched the music channels for a short while. Then I put out all my tablets for the week and made a note of which ones I was running short of.
On Sun eve I rewatched Mamma Mia with my mum. We quite enjoyed watching it together but I don't think it's as brilliant as everyone seems to say it is - it's so cheesy and some of the songs have no relevance at all to the plot (especially The Winner Takes it All which had me and mum in fits of the giggles much to dad's bemusement!).
Later that eve I felt really down about everything and kept crying. I know it's silly as I've not really got anything to be upset about and I know that my health and my life is much better than lots of people I know, so I shouldn't get upset, but you know how it is sometimes.
To try to cheer myself up after that I decided to try out a new Wii game called Okami which had some really good reviews. It looked great but unfortunately the game requires drawing lines with the Wiimote and my hands aren't steady enough to do that so I can't play the game, which is very disappointing. Before I went to sleep I started listening to the latest ONM podcast.
This morn I helped mum out with some errands around the village. We went to the surgery (to drop off a prescription for me and pick up mum's tabs), the library (for mum to do some cleaning and I picked up a Scoubidou book and a DVD), the post box (to post back one of my rental DVDs), a shop (to buy some croissants, milk etc) and another shop (to buy some bread).
While me and mum had lunch we watched the music channels and part of a stand up comedy programme by Dylan Moran. I was also given a link on Facebook to a letter written by Nick Clegg about ME which you can view here. I was very impressed with it.
This aft I had a bit of a meltdown. I don't really want to go into detail about it but I just got really really upset for no real reason and ended up going back to bed for a few hours. I don't know what's up with me at the mo.
This eve I listened to Ellie Goulding being interviewed on a radio programme which you can listen to here. After tea I ate my final high calorie pudding, yay! :D I'm now going to see how my weight goes without having one high calorie pudding each eve. I'll weigh myself tomorrow and then hopefully when I weigh myself again 2 weeks later my weight won't have dropped. I've just watched the 2nd part of Wormwood Scrubs and the 3rd episode of Bizarre ER. I'm currently watching The Graham Norton Show because Ruth Jones is being interviewed and Katie Melua will be performing The Flood later. I'm never been a Katie Melua fan before, but I do like The Flood. I've just been laughing aloud at them talking about accents, very funny.
LLTGL are currently looking for opinions on their new t-shirt designs so please pop over to their blog here and leave a comment about which design you like the best.
That aft me and mum were going to go and see my nan, but I had bad tummy pains again so decided to stay at home while my mum went out. I don't know why my tummy pains have got a lot worse over the last few days. I did miss one dose of Amitriptyline but wouldn't have thought that would cause this. I'm only on a very small dose of Amitriptyline so am going to ask my Hosp A consultant when I see him in a couple of weeks if increasing my dose might help. My next clinic is now just 2 and a half weeks away and I'm still not happy about completing my transition then, so will let the team there know that when I see them. I'm still waiting to hear back from S about my questions relating to Tac bloods.
I was sorry to miss seeing my nan on Fri so hopefully I'll see her at some point this week. My tummy soon felt a bit better so while mum was out I watched a DVD called Jumper which I enjoyed more than I expected.
Then I heard that Ellie Goulding had announced dates for a UK tour in Oct/Nov and would be coming to a seated venue near me. I saw her supporting Little Boots last Oct but didn't know her or her music then so would love to see her again now I know more of her songs. The tickets go on pre-sale on Wed morn so I'm going to try to get some then. I'm waiting to hear from Claire about whether she'll be free to come with me and mum.
On Fri I really struggled with eating my tea. Generally I'm finding eating a bit easier at the mo but sometimes I do really struggle with it. That eve I really enjoyed watching the penultimate episode of Ashes to Ashes with my parents. I can't wait for the final episode on Fri but also really don't want it to end. Before I went to bed that night I listened to Diana Vickers' album, Songs from the Tainted Cherry Tree, and Little Boots' album, Hands. I've been listening to Diana Vickers' album a lot but that was the first time I'd listened to Little Boots' album in a while so I enjoyed that.
I didn't feel too good on Sat but I didn't feel too ill. I really struggled to get up in the morn, I was more tired than usual, my feet ached all day (not the pain I usually get but just lots of aching like I'd done too much walking the previous day, but I hadn't) and I felt quite lightheaded at one point.
Something I struggle with at the moment is wearing clean clothes. They often feel very uncomfortable for an hour or two when I first put them on, especially my jeans. I thought this was just me being weird but I've recently discovered that having oversensitive skin can actually be a symptom of ME. I don't think there's anything I can do about it though. I also find that finding new clothes that are comfortable is very difficult so I'm not looking forward to having to replace all my clothes that are starting to fall apart.
That morn I watched Embarrassing Bodies: Kids on 4OD. I was very excited to receive a text as I thought that meant my mobile was working again, but it wasn't. I had a little look at my DLA forms and I relieved that they don't look too hard to fill out as it's mostly just ticking boxes. Not sure how I fit into their categories though, so I suspect I might end up losing my DLA. I've decided that I'm going to try to get them completed and sent off before my parents and brother head off to Glastonbury in just over a month. I just need to find a time when dad can have a look at them with me.
While I wasn't feeling so good I listened to The Family Jewels by Marina and the Diamonds on my iPod. Then Chris popped round. It was nice to see him and he stayed for tea. He's going to try a different job so he was telling us about that. He currently helps to manage a restaurant that is attached to a hotel and he's always worked in bar work or catering (not actually cooking, but managing). However he's decided to go across to the hotel and work there with administration, finances and working at the reception etc. The pay is the same and it's the same hours though at more sociable times. He's interested to learn more about how the hotel works and it'll look good on his CV too. He's starting a few hotel shifts this week and then increasing them over the next couple of weeks. Hopefully it'll all go well for him. His car's broken again and isn't reparable this time. That's what happens if you buy cars from eBay! Chris also had a fiddle with my phone but had no idea what the problem was. Mum remembered that there is a Nokia repair place nearer than a T-Mobile shop so we thought about taking my phone in to be looked at there.
On Sat eve I enjoyed watching Doctor Who with my family. I thought Sat's episode was really good and very original. After that I watched the music channels for a little while and then a good film on BBC3 called Flightplan. That eve I had tummy ache, which isn't a time I usually have tummy ache. This was just an ache though rather than a pain so I managed to get to sleep ok with it.
On Sun I got up about 2/3 hours earlier than I usually would and with my parents I headed out to the annual carboot sale at my old secondary school. I was quite worried about bumping into people I knew there, but I only saw 2 and managed to avoid them seeing me :P At the carboot sale I picked up a couple of things for Claire (an old Take That annual and a Tardis tin), 3 books (the Script book of Juno because I love the film, the novel Stardust which I hope to read at some point because I recently enjoyed watching the film and a children's book by Malorie Blackman which I used to enjoy reading) and 4 DVDs (Beaches, The Magic Bubble, Down with Love and Aardman Classics). When I met up with my parents at the end mum showed me a Nokia 3310 that she'd picked up to me. I've been using it since then and it's fantastic to be able to phone and text again :D The only thing I miss with using an older phone is the camera, but apart from that it does everything I need and should last me til Chris passes his iPhone onto me at the end of Sept.
I felt a bit odd that afternoon which I think was probably due to getting up much earlier than usual. And I also had more dizzy spells than I had been having for the past week or two. Hopefully my dizziness will clear up completely soon, fingers crossed. When I got home from the carboot sale I was really pleased to hear that Tori had received her transplant call. Since then she's had her transplant and it sounds like she's been making really good progress. I don't know Tori personally but have been following her blog for a while now.
I enjoyed doing a couple of little jigsaws and then sorted through the HDR and deleted some recordings. While I was doing that I rewatched the first part of the first episode of the current series of Doctor Who with mum, watched last week's Friday Night with Jonathan Ross (to see Alexandra Burke being interviewed and Ellie Goulding performing) and watched the music channels for a short while. Then I put out all my tablets for the week and made a note of which ones I was running short of.
On Sun eve I rewatched Mamma Mia with my mum. We quite enjoyed watching it together but I don't think it's as brilliant as everyone seems to say it is - it's so cheesy and some of the songs have no relevance at all to the plot (especially The Winner Takes it All which had me and mum in fits of the giggles much to dad's bemusement!).
Later that eve I felt really down about everything and kept crying. I know it's silly as I've not really got anything to be upset about and I know that my health and my life is much better than lots of people I know, so I shouldn't get upset, but you know how it is sometimes.
To try to cheer myself up after that I decided to try out a new Wii game called Okami which had some really good reviews. It looked great but unfortunately the game requires drawing lines with the Wiimote and my hands aren't steady enough to do that so I can't play the game, which is very disappointing. Before I went to sleep I started listening to the latest ONM podcast.
This morn I helped mum out with some errands around the village. We went to the surgery (to drop off a prescription for me and pick up mum's tabs), the library (for mum to do some cleaning and I picked up a Scoubidou book and a DVD), the post box (to post back one of my rental DVDs), a shop (to buy some croissants, milk etc) and another shop (to buy some bread).
While me and mum had lunch we watched the music channels and part of a stand up comedy programme by Dylan Moran. I was also given a link on Facebook to a letter written by Nick Clegg about ME which you can view here. I was very impressed with it.
This aft I had a bit of a meltdown. I don't really want to go into detail about it but I just got really really upset for no real reason and ended up going back to bed for a few hours. I don't know what's up with me at the mo.
This eve I listened to Ellie Goulding being interviewed on a radio programme which you can listen to here. After tea I ate my final high calorie pudding, yay! :D I'm now going to see how my weight goes without having one high calorie pudding each eve. I'll weigh myself tomorrow and then hopefully when I weigh myself again 2 weeks later my weight won't have dropped. I've just watched the 2nd part of Wormwood Scrubs and the 3rd episode of Bizarre ER. I'm currently watching The Graham Norton Show because Ruth Jones is being interviewed and Katie Melua will be performing The Flood later. I'm never been a Katie Melua fan before, but I do like The Flood. I've just been laughing aloud at them talking about accents, very funny.
LLTGL are currently looking for opinions on their new t-shirt designs so please pop over to their blog here and leave a comment about which design you like the best.
Friday, 14 May 2010
A busy few days
My older brother Chris has always been very unreliable. He was going to come round to see us on Tue but then on Tue when I phoned him he said he'd come round the next day instead. He didn't show on Wed either. I'm always surprised when he doesn't turn up, but I really shouldn't be after all this time! :P
On Sun night I had another dizzy spell so I got a GP appt for the following morn :) After looking in my ears, making me move my head and follow his finger etc he told me that I had viral labyrinthitis. I was so relieved to hear that it's nothing to worry about and isn't related to any of my other medical problems, phew! Apparently it occurs when a mild virus affects one of the balance centres which slows the signals down so they're not in sync any more. And that means that when you turn your head you feel dizzy. He was very surprised I'd not looked my symptoms up on the Internet - I'd never do that, I'm sure that would scare me to death! :P There is no cure but medicines can be given for the symptoms if necessary. Sometimes it goes withing 24 hours, sometimes it takes a week or so. But he thought mine was definitely on the way out, so it should go completely soon. I've had a few more dizzy spells since though, so I really hope it disappears soon. My GP also said that sometimes it reoccurs a second time so I've got to keep an eye out for that but if it does, the second time usually isn't as bad as the first. And while I was there we also reviewed all my medications.
On Mon aft me and mum went to see my nan. I took her a copy of The Family Jewels CD by Marina and the Diamonds and taught her how to play that through her laptop :) I also installed a new printer cartridge for her. We then put the music on in the background and me and mum helped my nan sort through all her books. She didn't get rid of many though and wanted to keep loads that me and mum disagreed with her about :P
While I was at my nan's I was disappointed to put my finger through my jeans, they've got a small hole in the back :( I hate shopping for clothes and always struggle to find ones that fit well and are comfortable so I was very happy to find 2 pairs of perfect jeans a year or two ago, but now one pair has a hole. I'm sure I'll put off shopping for some more for as long as I possibly can but I'll have to do it soon. The cuffs of my favourite hooded jacket and poloneck are starting to fall apart too. And while I was at my nan's I discovered holes in the socks I was wearing, but I don't mind about that - socks are easy to buy and I have plenty of pairs.
After we got back from my nan's I sent off an application for a new CEA card (the card that allows a carer into the cinema with me for free because I receive DLA) because they only last a year and my old one is about to expire. I thought I'd have to try to sort out a passport sized photo (I hate having my photo taken) but luckily I found one tucked away, phew!
As you'll probably know from reading my past blog updates there is a fantastic charity called AYME which supports young people with ME and has been invaluable to me since I was diagnosed with ME last Aug, especially the message boards where I can talk to other people who know what I'm going through. A couple of weeks ago a post was put up on the message boards saying they were looking to recruit some new voluntary peer support moderators (PSMs). The PSMs keep the board running smoothly, support users, provide information in response to posts and remove any inappropriate messages etc. Because I'm already very active on the boards I really liked the sound of this but didn't know whether to apply or not because I tend to commit to too much and then can't keep up with everything. But the day before the deadline I decided to go for it. I'll let you know when I hear anything.
On Mon eve I watched Young, Austistic and Stagestruck and the first 2 episodes of the new series of Bizarre ER on TV. I also watched 2 episodes of the second series of Outnumbered from my DVD.
On Tue in the post I received a bank statement and my new phone battery. Unfortunately replacing the battery in my phone hasn't fixed the problems. Although the new battery lasts longer than the previous battery did it still runs down in about a day. And I still can't send or receive texts or phone calls. Grrrr. It's so frustrating not having a working mobile. I tried swapping my SIM with mum's SIM to find out whether the problem was with my SIM or the phone itself. However my SIM worked in mum's phone and mum's SIM worked in my phone, but my SIM doesn't work in my phone - how odd! I think my best bet would be to go into a T-Mobile shop and ask for their advice, but the nearest one is in the city and I don't have any plans to go there at the mo and it's a bit far to ask mum to go just for that. I thought I'd try using an old phone for now so found 2 old Nokia phones in the house. Unfortunately neither of them work so I've put out a request on Facebook asking if any of my friends have a phone I can borrow until I get my phone looked at at a T-Mobile shop. It might be completely broken, but I'm not sure yet if it's going to be fixable or not. And I don't want to buy a new phone because I'm getting Chris' iPhone in Sept so I guess if my phone isn't fixable I can just use an old basic phone til then.
I didn't do much on Tue but did a few odd jobs like going to the local shop for the new Radio Times and sorting the dishwasher and washing out for mum because she was at work. I watched the music channels for a while during the day and a programme I'd recorded the previous night about a prison called Wormwood Scrubs.
I received a reply from my dietician at Hosp A saying that she's happy for me to stop the high calorie puddings :) I'm currently finishing up the ones I've got (I think I'll have my last one on Mon eve) and we'll then see how my weight goes without them. I think I'll be fine without them, but I'll let you know how it goes.
I heard that the page that me and Emma wrote for Transplant Kids has been added to the main website :) You can find it by going to the main TK page here, clicking on 'info' and then clicking on the red box on the right side of the page just before half way down. Or you can go directly to it by clicking here.
After my braces behaving so well for a while I wasn't happy on Tue when I realised that one of the brackets was cutting my lip. I put some wax on the offending bracket overnight to protect my lip and it's been fine since then :)
On Tue eve I watched Children's Hospital and Children's Emergency on TV. I also watched the last 3 episodes of the second series of Outnumbered plus all the extra features from my DVD.
That night I forgot to take my Amitriptyline for the first time. I don't think it makes any difference to my sleeping so wasn't worried there but was a bit fearful of getting more tummy pains the next day. I did get some the yesterday but they didn't last too long and weren't too painful so I think the Amitriptyline has probably built up a bit in my body. When I had those tummy pains I realised they were the first I'd had for a few days :)
Yesterday (Wed) aft I went into town with mum. While I was there I bought Sonic and Sega All-Stars Racing for the Wii (which was released down from £30 to £20 in the GAME sale) and Super Bust-A-Move for the PS2 (which was 99p in Cash Converters).
After that I headed to my physio appt. My physio had a look at my feet and my legs and I had to do some walking for her. She said that she thinks that the pain I'm getting in my heels isn't being caused by a problem with my feet because I'm not flat footed (my GP said I was, but I trust her opinions more in that area) but the muscles down the backs of my legs and feet are tight which could be causing the pain because my feet have to compensate for it when I walk. So I've got some calf stretches to do which should help, fingers crossed. She also gave me some general conditioning exercises to do at least 3 times a week. That'll be a challenge for me because I've never stuck at doing physio exercises before, but I'll give it a try. She suggested I set a goal to try to gradually build up the length of time that I do the exercises for and maybe set a goal to try to gradually work towards about being able to walk for a certain length of time. She wants to hear my goals when I next see her in 5 weeks time. She also told me that a colleague of hers had told her about a local ME clinic so she wondered if I'd heard of it. That's where I was diagnosed so I told her about my experiences with them - they couldn't offer me any more than a diagnosis and one appt with an occupational therapist due to a lack of funding. She suggested I should phone them to ask if they can offer me anything else (that's already on my to-do list) because the physio dept I'm being seen at is mainly for pain.
After my physio appt me and mum went to see my nan and I taught her the basics of how to use her new digital camera. And she insisted on paying for the Wii game I'd just bought because I do so much to help her! I did say that I couldn't accept the money but she wasn't having any of it, hehe.
When we got home I had an email from S (the transplant co-ordinator at Hosp A) saying she's spoken to the phlebotomist I see at Hosp H (my local hosp) for my bloods and that things should work similarly when I'm under Hosp A. However they don't use Tac kits so I'll have to have Tac bloods done with the rest of my bloods too. They'll send me a bloods letter before each clinic so my consultant will have the results by then. Because I have to have Tac bloods done at the hosp I'll have to delay taking my Tac but if I get my bloods done early I shouldn't have to delay it too much and that'll be fine because that's what the rest of their patients have to do. Because Hosp H don't process Tac bloods I'll then have to post that to Hosp A (apparently S is going to provide me with a box to send the sample in) to be processed there.
I chatted to my parents about this over tea and I was a bit concerned that S hadn't thought this through, so I emailed her with some questions about my Tac bloods that eve. If I've got to post the Tac to Hosp A why can't I take the blood via a fingerprick at home? I've got loads of lancets (finger prickers) so will only need the bottles. I need to find out how much blood they need too. If I can do it that way I won't have to delay taking my Tac. If taking Tac is delayed the levels in the blood drop and that creates more rejection risks. The doctors make out that delaying Tac for a few hours to take bloods isn't risky, but I've never done that (because I've always done my bloods at home via a fingerprick) and I've also never had rejection (98% of all small bowel transplant rejections do in the first 2 years after transplant). I suspect there may be a link there so don't want to start delaying Tac doses if it can be avoided. I also need to check that Hosp H have the right Tac bottles because when I ran out of the ones that Hosp B gave me I asked for one at Hosp H but they didn't have them. Maybe Hosp B and Hosp A use different Tac bottles. I also need to know how S is going to get the box for posting the Tac to me because I'll need that before the clinic. Hopefully S will reply soon.
I've been wanting to speak to my parents about all my other transition concerns for a while because my transition date (7th June) is getting closer and I'm really not happy about it. I asked to be told how things would work when I was completely under Hosp A but I've not been given as much info as I'd like and I'd like to be able to spot and then act on potential problems now, rather than when they actually occur. And the team at Hosp A (with the exception of the dietican) haven't proven themselves at being good at communicating with me either. Hopefully I'll be able to talk to my parents about it at the weekend.
Alf is trying to get stronger and beef himself up because he's really skinny. His favourite method of doing this is by standing at the bottom of the stairs, grabbing the landing floor and pulling himself up. I know this probably doesn't make much sense, it's hard to describe :P The other day Alf ordered himself something from Amazon that you attach to a doorway and then it gives you a bar that you can do chin-up type things on. Again this probably makes no sense, but it looks like this. It arrived in the post yesterday and he's really pleased with it.
Yesterday eve I watched the first episode of Junior Apprentice, Embarrassing Bodies: Kids, Lord Sugar being interviewed on Fri Night with Jonathan Ross and Autistic Driving School. Unfortunately our Internet was playing up so watching Embarrassing Bodies (a 45min programme) online took me 90mins and watching Autistic Driving School (a 60min programme) also took me 90mins!
Today (Thur) I went into town and my tummy pains were very bad. Luckily they eased off in time for me to go into Barnardo's to do an hour of volunteering. I'm trying to stick at it but it's so boring and monotonous. Mum popped in to see me during my hour of volunteering today because she was trying to avoid being spotted by someone she knew on the high street :P She'd not seen me volunteering before and couldn't believe how dull what I was doing was! There was only the grumpy lady from last week in and she didn't talk to me. Mum told me later that she hadn't been busy with customers, she'd just been sitting in the front of the shop reading her book - so she could have talked to me! So I just stood and hung clothes up for an hour. I really don't know what to do now, I don't enjoy it but feel like I'm doing something worthwhile and it's good to have something to do outside the house, so I feel like I ought to stick at it. I don't know if I can though.
When I'd finished volunteering I met mum in a cafe where we had drinks. I then bought some presents for a friend who's birthday is at the end of May and I bought myself a few packets of my favourite biscuits from M&S ;)
This eve I made a start on planning the organ donation talk I'm going to give to a group of Claire's students next Wed. I've not done much work on it yet but know have a rough outline so that's a good start :)
I also spoke to my friend Het on FB chat. She lives out of the nearest city in another direction so we don't see each other very often (it can only usually happen if I'm feeling up to going into the city and she's got a free day, which isn't very often!) but her study leave is starting soon (she's in year 12 at sixth form), so she's got some free time and wants to come round and see me. She's got a moped so is going to drive here and she's happy to do that even though the journey will take her about 45mins. It's really lovely to hear from someone (apart from Claire or Lizzy) who wants to see me and doesn't need me to do all the chasing and planning to make it happen :) She's going to be in touch again in a couple of weeks once she's got some exams out the way, so hopefully we'll be able to choose a day then.
I had fun trying out Sonic & Sega All-Stars Racing but found it quite tiring. And I enjoyed watching the latest episode of Outnumbered on TV.
While I've been writing this up I've listened to Diana Vickers' album, Songs From The Tainted Cherry Tree, on Spotify and am now listening to Pixie Lott's Album, Turn It Up, on iTunes. I found an interesting interview with Diana Vickers on the Internet which you can read here. I also found this interesting video on the Internet that goes behind the scenes of Ellie Goulding's latest music video.
I found out on the Internet that Selfridges in London have allowed 10 music artists to design a window display about one of their songs or albums. Marina did one based on I Am Not A Robot, so I had a look at the photos of that on the Internet. You can see more about the window displays including photos here.
I'm sorry this has ended up so long, I didn't expect it to be. I probably ought to try to write less but I find that so hard! :P My blog is now completely up to date for the first time in over a month :D
On Sun night I had another dizzy spell so I got a GP appt for the following morn :) After looking in my ears, making me move my head and follow his finger etc he told me that I had viral labyrinthitis. I was so relieved to hear that it's nothing to worry about and isn't related to any of my other medical problems, phew! Apparently it occurs when a mild virus affects one of the balance centres which slows the signals down so they're not in sync any more. And that means that when you turn your head you feel dizzy. He was very surprised I'd not looked my symptoms up on the Internet - I'd never do that, I'm sure that would scare me to death! :P There is no cure but medicines can be given for the symptoms if necessary. Sometimes it goes withing 24 hours, sometimes it takes a week or so. But he thought mine was definitely on the way out, so it should go completely soon. I've had a few more dizzy spells since though, so I really hope it disappears soon. My GP also said that sometimes it reoccurs a second time so I've got to keep an eye out for that but if it does, the second time usually isn't as bad as the first. And while I was there we also reviewed all my medications.
On Mon aft me and mum went to see my nan. I took her a copy of The Family Jewels CD by Marina and the Diamonds and taught her how to play that through her laptop :) I also installed a new printer cartridge for her. We then put the music on in the background and me and mum helped my nan sort through all her books. She didn't get rid of many though and wanted to keep loads that me and mum disagreed with her about :P
While I was at my nan's I was disappointed to put my finger through my jeans, they've got a small hole in the back :( I hate shopping for clothes and always struggle to find ones that fit well and are comfortable so I was very happy to find 2 pairs of perfect jeans a year or two ago, but now one pair has a hole. I'm sure I'll put off shopping for some more for as long as I possibly can but I'll have to do it soon. The cuffs of my favourite hooded jacket and poloneck are starting to fall apart too. And while I was at my nan's I discovered holes in the socks I was wearing, but I don't mind about that - socks are easy to buy and I have plenty of pairs.
After we got back from my nan's I sent off an application for a new CEA card (the card that allows a carer into the cinema with me for free because I receive DLA) because they only last a year and my old one is about to expire. I thought I'd have to try to sort out a passport sized photo (I hate having my photo taken) but luckily I found one tucked away, phew!
As you'll probably know from reading my past blog updates there is a fantastic charity called AYME which supports young people with ME and has been invaluable to me since I was diagnosed with ME last Aug, especially the message boards where I can talk to other people who know what I'm going through. A couple of weeks ago a post was put up on the message boards saying they were looking to recruit some new voluntary peer support moderators (PSMs). The PSMs keep the board running smoothly, support users, provide information in response to posts and remove any inappropriate messages etc. Because I'm already very active on the boards I really liked the sound of this but didn't know whether to apply or not because I tend to commit to too much and then can't keep up with everything. But the day before the deadline I decided to go for it. I'll let you know when I hear anything.
On Mon eve I watched Young, Austistic and Stagestruck and the first 2 episodes of the new series of Bizarre ER on TV. I also watched 2 episodes of the second series of Outnumbered from my DVD.
On Tue in the post I received a bank statement and my new phone battery. Unfortunately replacing the battery in my phone hasn't fixed the problems. Although the new battery lasts longer than the previous battery did it still runs down in about a day. And I still can't send or receive texts or phone calls. Grrrr. It's so frustrating not having a working mobile. I tried swapping my SIM with mum's SIM to find out whether the problem was with my SIM or the phone itself. However my SIM worked in mum's phone and mum's SIM worked in my phone, but my SIM doesn't work in my phone - how odd! I think my best bet would be to go into a T-Mobile shop and ask for their advice, but the nearest one is in the city and I don't have any plans to go there at the mo and it's a bit far to ask mum to go just for that. I thought I'd try using an old phone for now so found 2 old Nokia phones in the house. Unfortunately neither of them work so I've put out a request on Facebook asking if any of my friends have a phone I can borrow until I get my phone looked at at a T-Mobile shop. It might be completely broken, but I'm not sure yet if it's going to be fixable or not. And I don't want to buy a new phone because I'm getting Chris' iPhone in Sept so I guess if my phone isn't fixable I can just use an old basic phone til then.
I didn't do much on Tue but did a few odd jobs like going to the local shop for the new Radio Times and sorting the dishwasher and washing out for mum because she was at work. I watched the music channels for a while during the day and a programme I'd recorded the previous night about a prison called Wormwood Scrubs.
I received a reply from my dietician at Hosp A saying that she's happy for me to stop the high calorie puddings :) I'm currently finishing up the ones I've got (I think I'll have my last one on Mon eve) and we'll then see how my weight goes without them. I think I'll be fine without them, but I'll let you know how it goes.
I heard that the page that me and Emma wrote for Transplant Kids has been added to the main website :) You can find it by going to the main TK page here, clicking on 'info' and then clicking on the red box on the right side of the page just before half way down. Or you can go directly to it by clicking here.
After my braces behaving so well for a while I wasn't happy on Tue when I realised that one of the brackets was cutting my lip. I put some wax on the offending bracket overnight to protect my lip and it's been fine since then :)
On Tue eve I watched Children's Hospital and Children's Emergency on TV. I also watched the last 3 episodes of the second series of Outnumbered plus all the extra features from my DVD.
That night I forgot to take my Amitriptyline for the first time. I don't think it makes any difference to my sleeping so wasn't worried there but was a bit fearful of getting more tummy pains the next day. I did get some the yesterday but they didn't last too long and weren't too painful so I think the Amitriptyline has probably built up a bit in my body. When I had those tummy pains I realised they were the first I'd had for a few days :)
Yesterday (Wed) aft I went into town with mum. While I was there I bought Sonic and Sega All-Stars Racing for the Wii (which was released down from £30 to £20 in the GAME sale) and Super Bust-A-Move for the PS2 (which was 99p in Cash Converters).
After that I headed to my physio appt. My physio had a look at my feet and my legs and I had to do some walking for her. She said that she thinks that the pain I'm getting in my heels isn't being caused by a problem with my feet because I'm not flat footed (my GP said I was, but I trust her opinions more in that area) but the muscles down the backs of my legs and feet are tight which could be causing the pain because my feet have to compensate for it when I walk. So I've got some calf stretches to do which should help, fingers crossed. She also gave me some general conditioning exercises to do at least 3 times a week. That'll be a challenge for me because I've never stuck at doing physio exercises before, but I'll give it a try. She suggested I set a goal to try to gradually build up the length of time that I do the exercises for and maybe set a goal to try to gradually work towards about being able to walk for a certain length of time. She wants to hear my goals when I next see her in 5 weeks time. She also told me that a colleague of hers had told her about a local ME clinic so she wondered if I'd heard of it. That's where I was diagnosed so I told her about my experiences with them - they couldn't offer me any more than a diagnosis and one appt with an occupational therapist due to a lack of funding. She suggested I should phone them to ask if they can offer me anything else (that's already on my to-do list) because the physio dept I'm being seen at is mainly for pain.
After my physio appt me and mum went to see my nan and I taught her the basics of how to use her new digital camera. And she insisted on paying for the Wii game I'd just bought because I do so much to help her! I did say that I couldn't accept the money but she wasn't having any of it, hehe.
When we got home I had an email from S (the transplant co-ordinator at Hosp A) saying she's spoken to the phlebotomist I see at Hosp H (my local hosp) for my bloods and that things should work similarly when I'm under Hosp A. However they don't use Tac kits so I'll have to have Tac bloods done with the rest of my bloods too. They'll send me a bloods letter before each clinic so my consultant will have the results by then. Because I have to have Tac bloods done at the hosp I'll have to delay taking my Tac but if I get my bloods done early I shouldn't have to delay it too much and that'll be fine because that's what the rest of their patients have to do. Because Hosp H don't process Tac bloods I'll then have to post that to Hosp A (apparently S is going to provide me with a box to send the sample in) to be processed there.
I chatted to my parents about this over tea and I was a bit concerned that S hadn't thought this through, so I emailed her with some questions about my Tac bloods that eve. If I've got to post the Tac to Hosp A why can't I take the blood via a fingerprick at home? I've got loads of lancets (finger prickers) so will only need the bottles. I need to find out how much blood they need too. If I can do it that way I won't have to delay taking my Tac. If taking Tac is delayed the levels in the blood drop and that creates more rejection risks. The doctors make out that delaying Tac for a few hours to take bloods isn't risky, but I've never done that (because I've always done my bloods at home via a fingerprick) and I've also never had rejection (98% of all small bowel transplant rejections do in the first 2 years after transplant). I suspect there may be a link there so don't want to start delaying Tac doses if it can be avoided. I also need to check that Hosp H have the right Tac bottles because when I ran out of the ones that Hosp B gave me I asked for one at Hosp H but they didn't have them. Maybe Hosp B and Hosp A use different Tac bottles. I also need to know how S is going to get the box for posting the Tac to me because I'll need that before the clinic. Hopefully S will reply soon.
I've been wanting to speak to my parents about all my other transition concerns for a while because my transition date (7th June) is getting closer and I'm really not happy about it. I asked to be told how things would work when I was completely under Hosp A but I've not been given as much info as I'd like and I'd like to be able to spot and then act on potential problems now, rather than when they actually occur. And the team at Hosp A (with the exception of the dietican) haven't proven themselves at being good at communicating with me either. Hopefully I'll be able to talk to my parents about it at the weekend.
Alf is trying to get stronger and beef himself up because he's really skinny. His favourite method of doing this is by standing at the bottom of the stairs, grabbing the landing floor and pulling himself up. I know this probably doesn't make much sense, it's hard to describe :P The other day Alf ordered himself something from Amazon that you attach to a doorway and then it gives you a bar that you can do chin-up type things on. Again this probably makes no sense, but it looks like this. It arrived in the post yesterday and he's really pleased with it.
Yesterday eve I watched the first episode of Junior Apprentice, Embarrassing Bodies: Kids, Lord Sugar being interviewed on Fri Night with Jonathan Ross and Autistic Driving School. Unfortunately our Internet was playing up so watching Embarrassing Bodies (a 45min programme) online took me 90mins and watching Autistic Driving School (a 60min programme) also took me 90mins!
Today (Thur) I went into town and my tummy pains were very bad. Luckily they eased off in time for me to go into Barnardo's to do an hour of volunteering. I'm trying to stick at it but it's so boring and monotonous. Mum popped in to see me during my hour of volunteering today because she was trying to avoid being spotted by someone she knew on the high street :P She'd not seen me volunteering before and couldn't believe how dull what I was doing was! There was only the grumpy lady from last week in and she didn't talk to me. Mum told me later that she hadn't been busy with customers, she'd just been sitting in the front of the shop reading her book - so she could have talked to me! So I just stood and hung clothes up for an hour. I really don't know what to do now, I don't enjoy it but feel like I'm doing something worthwhile and it's good to have something to do outside the house, so I feel like I ought to stick at it. I don't know if I can though.
When I'd finished volunteering I met mum in a cafe where we had drinks. I then bought some presents for a friend who's birthday is at the end of May and I bought myself a few packets of my favourite biscuits from M&S ;)
This eve I made a start on planning the organ donation talk I'm going to give to a group of Claire's students next Wed. I've not done much work on it yet but know have a rough outline so that's a good start :)
I also spoke to my friend Het on FB chat. She lives out of the nearest city in another direction so we don't see each other very often (it can only usually happen if I'm feeling up to going into the city and she's got a free day, which isn't very often!) but her study leave is starting soon (she's in year 12 at sixth form), so she's got some free time and wants to come round and see me. She's got a moped so is going to drive here and she's happy to do that even though the journey will take her about 45mins. It's really lovely to hear from someone (apart from Claire or Lizzy) who wants to see me and doesn't need me to do all the chasing and planning to make it happen :) She's going to be in touch again in a couple of weeks once she's got some exams out the way, so hopefully we'll be able to choose a day then.
I had fun trying out Sonic & Sega All-Stars Racing but found it quite tiring. And I enjoyed watching the latest episode of Outnumbered on TV.
While I've been writing this up I've listened to Diana Vickers' album, Songs From The Tainted Cherry Tree, on Spotify and am now listening to Pixie Lott's Album, Turn It Up, on iTunes. I found an interesting interview with Diana Vickers on the Internet which you can read here. I also found this interesting video on the Internet that goes behind the scenes of Ellie Goulding's latest music video.
I found out on the Internet that Selfridges in London have allowed 10 music artists to design a window display about one of their songs or albums. Marina did one based on I Am Not A Robot, so I had a look at the photos of that on the Internet. You can see more about the window displays including photos here.
I'm sorry this has ended up so long, I didn't expect it to be. I probably ought to try to write less but I find that so hard! :P My blog is now completely up to date for the first time in over a month :D
Monday, 10 May 2010
My weekend, health and Rachy
On Fri morn I felt quite depressed at all the election stuff. I'm not going to talk much about it here because I'm sure you're all fed up with politics now, but I was disappointed that Lib Dems did so badly and that the Tories got the most votes. I'm also concerned about what a coalition will mean especially if it ends up being between the Lib Dems and the Tories because they have such contrasting views.
That morn me and mum went out to see my nan though and that really cheered me up :) The first thing she asked me was whether I'd got my iPod with me because she was really keen to listen to some more music. I let her listen to Blue Eyes by Mika which she enjoyed but she said she preferred Marina and the Diamonds, so I let her listen to I Am Not A Robot. She loved that and was tapping her feet and singing along :) Next time I visit her I'm going to take her a copy of Marina's album and teach her how to play it through her DVD player or laptop. Mum and dad have also told me that she's just bought herself a new digital camera so I've got to teach her how to use that. I suspect it'll be a long job because she'll want to know what every button and every function do! :P
My copy of the latest issue to the Official Nintendo Magazine had arrived in the post that morn so I just relaxed and read that in the aft.
On Fri I received the email from S at Hosp A that she'd promised me before the end of the week and I'm not very happy. She basically said that they do things similarly to Hosp B but told me that I'll need to have my Tac blood taken at clinic because they don't use Tac kits. Then she confirmed the dates of the next clinic and said she'd see me there. That was the entire content of the email I'd waited 6 weeks for! The plan for these 3 months was for me to become happier about communication with the team and for me to find out how things will work when I'm under Hosp A. Neither of those things have happened - I've discovered that being told a reply will take one week can turn into 6 weeks and I still have no idea at all how they do things at Hosp A. Aaarrrggghhh! I'm really worried about this transition as I still have no confidence in the Hosp A team. I don't think they'll be any better with communication once Hosp B are out of the picture and that worries me. And I don't want to find out how they do things when they need to do them and then discovering the problems, I want to know in advance so stuff can be sorted out.
On Fri eve Claire came round for tea and we had a nice time together playing a card game called Ligretto, chatting and playing on my Wii :)
Yesterday (Sat) I had a pyjama day and can't think of much interesting to report about it :P I finalised an information page for Transplant Kids with Emma and enjoyed watching Doctor Who, rewatching Ashes to Ashes from the previous night and rewatching episode 6 of the second series of Outnumbered. I also watched a funny film called Zombieland. I don't usually watch horror films but this was a horror comedy and I was surprised at how much I enjoyed it.
I've had a lazy day again today (Sun) because I've been very tired. I enjoyed playing on New Super Mario Bros Wii for a little while and watching a film called Stardust. Lizzy recommended Stardust to me a little while ago but I kept putting off renting it because I don't usually enjoy fantasy films. But Tesco DVD rental sent it out to me so I tried it and was surprised at how much I enjoyed it. Today I also watched 2 episodes from series 2 of Outnumbered with my parents.
This evening I noticed that I'm running short on high calorie puddings so will need to give another prescription in at the surgery soon to get some more. But I thought before I do that I'd email my dieticians and ask them if I can stop having the high calorie puddings now because my weight is doing so well. I sent that email tonight so hope for positive replies within the next couple of days, fingers crossed. The high calorie puddings are the best high calorie supplements I've come across, but they're still not very pleasant and I can think of other foods I'd much rather eat instead.
I'm having serious problems with my mobile phone at the moment, grrr. I don't know if the 2 problems are connected or separate. The battery isn't fully charging and won't hold its charge so it's running down within less than 12 hours at the moment (compared to the week or longer that it used to hold it's charge for) which is really frustrating. The obvious solution to that would be to buy another battery and I've found that they're very cheap on eBay. But I've done some enquiring and it seems that the battery running down so quickly might be because the phone is having to work extra hard to get signal as the other problem I'm having at the moment is having no signal in places I'd usually have full signal. My phone only needs to last til the end of Sept and has never had any problems before so I didn't know what to do. I phoned Chris this eve and he said that he thought the signal problems might be because the battery level is often low, so he suggested buying a new battery and seeing if that helps. So I ordered one from eBay tonight. Hopefully that'll arrive soon and fix the signal problem as well as the battery problem, fingers crossed.
This weekend my parents have been getting some of the Glastonbury stuff out to start preparing (Glastonbury is at the end of June). It's usually just dad and Alf that go so they've only got 2 sleeping mats, 2 sleeping bags etc, but mum is going with them this year (I'm staying at home in the warm and dry!) so they're having to sort out what mum needs to buy. They ordered her a sleeping mat and sleeping bag today online. When mum was trying out dad's sleeping bag the other day dad zipped it right up so she completely disappeared inside! I wish I'd had my camera handy! Mum has never slept in a sleeping bag before so that'll be a new experience for her. When she was trying out dad's she discovered it was too narrow for her to lie comfortably in (she sleeps in a weird position that's hard to explain in words), so dad ordered her a wider one. Mum has also ordered a clever gadget called a Shewee.
I've not got many plans for this week at the moment. Tomorrow (Mon) I'm going to visit my nan with mum to help her sort through her books and hopefully get rid of some. My nan isn't very good at getting rid of things though :P And my only other plan for this week is a physio appt on Wed aft.
Since I did the last blog post about my health as part of my big blog update I've though of a few more things to post about. My dizziness completely disappeared from last Sat eve to Tue eve which was fantastic. It then came back again but wasn't nearly as bad as before and I was only getting maybe one very brief and mild dizzy spell each day, which was a relief. However tonight while I've been sitting at my laptop I've been feeling quite dizzy despite sitting still, so I think I might try to make a GP appt tomorrow to get this checked out.
I sometimes go through spells of getting coldsores and have had a couple over the last few weeks. Sometimes they occur when I'm run down but I don't think my health is worse than usual at the moment. I thought the first one might have been caused by being out in the sun but the second one came in the gloomy weather so I don't know. They can be so sore and annoying though. Fingers crossed I won't get any more for a while.
I have been very nocturnal recently, which is annoying but I'm just trying to learn to live with it now. Going to sleep at about 4am the other night meant I probably didn't get enough sleep though.
My dad has recently self diagnosed himself with plantar fasciitis (the foot problem I have) in one of his feet. He wouldn't stop moaning about it when he first decided that was what it was - typical men! But he read on the Internet that stretching could cure it (my GP told me there was no cure) and now he's been stretching he says it's a lot better. At least he's stopped moaning so much now.
As I've mentioned before, my dad has recently started enjoying swimming and goes most days now. However we suspect he might be a bit allergic to some aspect of it because he always comes back sniffing and sneezing! Dad mentioned a few weeks ago that now he's achieved his goal of swimming 1 mile in a swimming pool he wants to try it in open water! I've not heard anything about that recently though so I suspect he might have had second thoughts.
My dad had a go at me the other day because he thought it was lazy of me not to be making my sandwiches at lunch time and asking mum to make them for me instead. After some upset I managed to explain to my parents that I don't like eating at the moment (although I have better days and worse days with that) and so I also don't like having anything more to do with food than I have to. Dad had no idea about the little things I often do around the house to help mum out during the day (emptying and stacking the dishwasher, pegging out and getting washing in, putting washing in the airing cupboard and getting it out and putting it away, going round to the local shop when we run out of things...) so when me and mum told him about that I think it made him see that I'm not being lazy. It was agreed that mum would continue making my sandwiches for me when she's in and I'll keep helping her out around the house.
Rachy has been in the media again a few times recently, she seems to be making really good progress at the moment and even wrote a blog post just over a week ago which you can read here! You can read an article from her local newspaper here, an article from the BBC news website here and you can even hear her talking on BBC Radio Manchester here! The radio programme will only be available to listen to online til Thur morn, so please have a listen before then. Rachy's bit is at 2hrs and 51mins through.
My blog is almost completely up to date now. I just want to write a little bit about what music I've been listening to and share some photos of mum's recent knitting photos with you. I was going to put the photos up tonight, but they're not on my laptop at the mo so I'll have to get them from the family computer tomorrow. I'm also going to do a post in the next few days about ME Awareness Week 2010 which is running from the 8th to the 16th May.
While I've been writing this up I've put Mika's music on :D I'm not sure why I've not learnt yet that that isn't sensible at this time of night because it makes me go hyper :P
That morn me and mum went out to see my nan though and that really cheered me up :) The first thing she asked me was whether I'd got my iPod with me because she was really keen to listen to some more music. I let her listen to Blue Eyes by Mika which she enjoyed but she said she preferred Marina and the Diamonds, so I let her listen to I Am Not A Robot. She loved that and was tapping her feet and singing along :) Next time I visit her I'm going to take her a copy of Marina's album and teach her how to play it through her DVD player or laptop. Mum and dad have also told me that she's just bought herself a new digital camera so I've got to teach her how to use that. I suspect it'll be a long job because she'll want to know what every button and every function do! :P
My copy of the latest issue to the Official Nintendo Magazine had arrived in the post that morn so I just relaxed and read that in the aft.
On Fri I received the email from S at Hosp A that she'd promised me before the end of the week and I'm not very happy. She basically said that they do things similarly to Hosp B but told me that I'll need to have my Tac blood taken at clinic because they don't use Tac kits. Then she confirmed the dates of the next clinic and said she'd see me there. That was the entire content of the email I'd waited 6 weeks for! The plan for these 3 months was for me to become happier about communication with the team and for me to find out how things will work when I'm under Hosp A. Neither of those things have happened - I've discovered that being told a reply will take one week can turn into 6 weeks and I still have no idea at all how they do things at Hosp A. Aaarrrggghhh! I'm really worried about this transition as I still have no confidence in the Hosp A team. I don't think they'll be any better with communication once Hosp B are out of the picture and that worries me. And I don't want to find out how they do things when they need to do them and then discovering the problems, I want to know in advance so stuff can be sorted out.
On Fri eve Claire came round for tea and we had a nice time together playing a card game called Ligretto, chatting and playing on my Wii :)
Yesterday (Sat) I had a pyjama day and can't think of much interesting to report about it :P I finalised an information page for Transplant Kids with Emma and enjoyed watching Doctor Who, rewatching Ashes to Ashes from the previous night and rewatching episode 6 of the second series of Outnumbered. I also watched a funny film called Zombieland. I don't usually watch horror films but this was a horror comedy and I was surprised at how much I enjoyed it.
I've had a lazy day again today (Sun) because I've been very tired. I enjoyed playing on New Super Mario Bros Wii for a little while and watching a film called Stardust. Lizzy recommended Stardust to me a little while ago but I kept putting off renting it because I don't usually enjoy fantasy films. But Tesco DVD rental sent it out to me so I tried it and was surprised at how much I enjoyed it. Today I also watched 2 episodes from series 2 of Outnumbered with my parents.
This evening I noticed that I'm running short on high calorie puddings so will need to give another prescription in at the surgery soon to get some more. But I thought before I do that I'd email my dieticians and ask them if I can stop having the high calorie puddings now because my weight is doing so well. I sent that email tonight so hope for positive replies within the next couple of days, fingers crossed. The high calorie puddings are the best high calorie supplements I've come across, but they're still not very pleasant and I can think of other foods I'd much rather eat instead.
I'm having serious problems with my mobile phone at the moment, grrr. I don't know if the 2 problems are connected or separate. The battery isn't fully charging and won't hold its charge so it's running down within less than 12 hours at the moment (compared to the week or longer that it used to hold it's charge for) which is really frustrating. The obvious solution to that would be to buy another battery and I've found that they're very cheap on eBay. But I've done some enquiring and it seems that the battery running down so quickly might be because the phone is having to work extra hard to get signal as the other problem I'm having at the moment is having no signal in places I'd usually have full signal. My phone only needs to last til the end of Sept and has never had any problems before so I didn't know what to do. I phoned Chris this eve and he said that he thought the signal problems might be because the battery level is often low, so he suggested buying a new battery and seeing if that helps. So I ordered one from eBay tonight. Hopefully that'll arrive soon and fix the signal problem as well as the battery problem, fingers crossed.
This weekend my parents have been getting some of the Glastonbury stuff out to start preparing (Glastonbury is at the end of June). It's usually just dad and Alf that go so they've only got 2 sleeping mats, 2 sleeping bags etc, but mum is going with them this year (I'm staying at home in the warm and dry!) so they're having to sort out what mum needs to buy. They ordered her a sleeping mat and sleeping bag today online. When mum was trying out dad's sleeping bag the other day dad zipped it right up so she completely disappeared inside! I wish I'd had my camera handy! Mum has never slept in a sleeping bag before so that'll be a new experience for her. When she was trying out dad's she discovered it was too narrow for her to lie comfortably in (she sleeps in a weird position that's hard to explain in words), so dad ordered her a wider one. Mum has also ordered a clever gadget called a Shewee.
I've not got many plans for this week at the moment. Tomorrow (Mon) I'm going to visit my nan with mum to help her sort through her books and hopefully get rid of some. My nan isn't very good at getting rid of things though :P And my only other plan for this week is a physio appt on Wed aft.
Since I did the last blog post about my health as part of my big blog update I've though of a few more things to post about. My dizziness completely disappeared from last Sat eve to Tue eve which was fantastic. It then came back again but wasn't nearly as bad as before and I was only getting maybe one very brief and mild dizzy spell each day, which was a relief. However tonight while I've been sitting at my laptop I've been feeling quite dizzy despite sitting still, so I think I might try to make a GP appt tomorrow to get this checked out.
I sometimes go through spells of getting coldsores and have had a couple over the last few weeks. Sometimes they occur when I'm run down but I don't think my health is worse than usual at the moment. I thought the first one might have been caused by being out in the sun but the second one came in the gloomy weather so I don't know. They can be so sore and annoying though. Fingers crossed I won't get any more for a while.
I have been very nocturnal recently, which is annoying but I'm just trying to learn to live with it now. Going to sleep at about 4am the other night meant I probably didn't get enough sleep though.
My dad has recently self diagnosed himself with plantar fasciitis (the foot problem I have) in one of his feet. He wouldn't stop moaning about it when he first decided that was what it was - typical men! But he read on the Internet that stretching could cure it (my GP told me there was no cure) and now he's been stretching he says it's a lot better. At least he's stopped moaning so much now.
As I've mentioned before, my dad has recently started enjoying swimming and goes most days now. However we suspect he might be a bit allergic to some aspect of it because he always comes back sniffing and sneezing! Dad mentioned a few weeks ago that now he's achieved his goal of swimming 1 mile in a swimming pool he wants to try it in open water! I've not heard anything about that recently though so I suspect he might have had second thoughts.
My dad had a go at me the other day because he thought it was lazy of me not to be making my sandwiches at lunch time and asking mum to make them for me instead. After some upset I managed to explain to my parents that I don't like eating at the moment (although I have better days and worse days with that) and so I also don't like having anything more to do with food than I have to. Dad had no idea about the little things I often do around the house to help mum out during the day (emptying and stacking the dishwasher, pegging out and getting washing in, putting washing in the airing cupboard and getting it out and putting it away, going round to the local shop when we run out of things...) so when me and mum told him about that I think it made him see that I'm not being lazy. It was agreed that mum would continue making my sandwiches for me when she's in and I'll keep helping her out around the house.
Rachy has been in the media again a few times recently, she seems to be making really good progress at the moment and even wrote a blog post just over a week ago which you can read here! You can read an article from her local newspaper here, an article from the BBC news website here and you can even hear her talking on BBC Radio Manchester here! The radio programme will only be available to listen to online til Thur morn, so please have a listen before then. Rachy's bit is at 2hrs and 51mins through.
My blog is almost completely up to date now. I just want to write a little bit about what music I've been listening to and share some photos of mum's recent knitting photos with you. I was going to put the photos up tonight, but they're not on my laptop at the mo so I'll have to get them from the family computer tomorrow. I'm also going to do a post in the next few days about ME Awareness Week 2010 which is running from the 8th to the 16th May.
While I've been writing this up I've put Mika's music on :D I'm not sure why I've not learnt yet that that isn't sensible at this time of night because it makes me go hyper :P
Thursday, 6 May 2010
Getting up to date with April - part 7 (more day to day stuff)
I decided on Tue 20th that I would let myself buy some more DVD boxsets if my total spending (not including rent, Tesco DVD rental and magazine subscription - my regular monthly payments) in April didn't exceed an amount that I set then based on what I'd spent so far during April. I thought that I'd let myself buy some DVD boxsets to take my spending that month up to the amount I set, but I ended up spending only £5 less than that amount which wasn't enough for a DVD boxset that I wanted. However I had had some unexpected outgoings towards the end of April including Alf choosing to cash his birthday IOU for an iPod charger so I decided to allow myself to spend a bit more than £5 on a DVD. I struggled to choose between Gavin and Stacey series 2 and 3 or Outnumbered series 2 and very nearly bought them all at once. But on Sun 2nd I decided on Outnumbered and ordered it that night. I'll get the Gavin and Stacey DVDs at another point, maybe at the end of this month/start of next month if I don't spend too much this month (I might aim to spend less than last month).
Mon 3rd May was Bank Holiday Mon so there were some local carboot sales on that me and my parents decided to have a look at. First we went to a one off carboot sale in a pub carpark in a neighbouring village. There I bought a DVD called In America DVD for 50p, 7 DVDs that had been free with newspapers for a total of £1 and 15 CD cases for £1. It was very chilly while we were looking round and there were some light showers too so I left my parents still looking round and went back to sit in the car round the corner to warm up. While I was sitting in the car another shower started up which got quite heavy and then it started hailing. I was very smug sitting all warm and dry in the car. Dad sensibly found some shelter in the pub car park til the hail eased but mum decided to run back to the car in it. She got soaked!
We then went back home and dropped dad off because he'd decided the weather wasn't good enough to go to another carboot sale. Mum changed out of her wet clothes, we both wrapped up a bit warmer and then we headed out to the carboot sale we usually go to. There were not as many stalls there as there usually is and the DVDs were all £2 each rather than £1 each so I didn't buy anything. Mum picked up a few things though including a weird thing that moos like a cow! On the way home we called in to visit nan briefly and give her back her mobile phone that we'd sorted out for her. The phone in her new flat wasn't going to be reconnected til Wed so it was important that she could use her mobile til then.
On Tue 4th May I weighed myself like I'm now doing fortnightly. It was also my monthly weight to email my dieticians with. My weight was 54.3kg - so up 0.6kg on the previous fortnight and up a total of 1kg in a month. Both my dieticians were very impressed and are happy for me to keep weighing myself and contacting them monthly. I never thought I'd say this, but I don't really want to put any more weight on now. If my weight is up again next month then I'm going to ask my dieticians if I can stop my high calorie puddings because I don't really like them.
That morn I walked to the post office and the local shop and also walked round to the surgery to drop in a prescription for me. That aft I had to return to the local shop when mum discovered that she'd run out of washing liquid for the washing machine. When mum got back from work at the library she showed me her first knitting needle injury - somehow a knitting needle had attacked her leg through her bag and her jeans and had left a visible scratch. Her leg is fine now though.
That evening I went to another meeting of the teenage discussion group in the village. V wasn't there so it was just A and B who lead it, me, K and M. The discussion on Tue eve was very religious - yawn! We did have some interesting discussion, but I'm not sure how we got onto talking about whether knitting is divine or not?!?! Although I'm a very private person about my health I don't mind mentioning it when it's my choice and in my control, so I brought it into the conversation because I felt it was relevant. I started off by saying "I don't know how much you know [because I didn't know if K or M knew anything about my medical history] but I had a transplant a few years ago" I know A knows about it all because she knows my mum and I assumed A had told B everything. So I was really surprised when B said that she didn't know that! We had an interesting discussion about politics at the end. K isn't 18 until the summer so can't vote yet, but the rest of us could. Me, A and B all said that we would be voting Lib Dems and proceeded to discuss all the parties. M kept very quiet. He's very posh, privately educated and quite stuck up so I assumed his quietness was because he's a Conservative supporter! They were all talking about the different politicians they've had coming to their doors to try to swing their votes, but we've not had any of them this year which is probably because we've got a Lib Dems sign in our garden :)
Yesterday (Wed 5th May) I emailed S (the transplant co-ordinator at Hosp A) again because it was 6 weeks since she'd promised me an email and I'd still not heard anything. In this email I just asked if she could please reply to my email from March 22nd as she said she would in her email dated March 23rd. She replied very quickly saying that she'd not forgotten me but she'd been off work for a while. I've been promised a full reply by the end of the week so hopefully I will get that. Only 5 weeks to go til my transition is due to be completed and I'm still no happier about it, eek! I wish S had just dropped me a quick email letting me know that it would be a while til she managed a full reply. Replying 5 weeks later than promised isn't really fair on me - I'm supposed to be learning to trust this team!
Yesterday morning I got up at 8.45am (which is very early for me) because I'd heard the previous day that the presale for Marina and the Diamonds' Oct/Nov tour would start on the Wed. However it didn't say a time, so I got up so I could be at my laptop by 9am in case they went on sale then. I kept refreshing my email page because the link would be sent to me in an email and the email eventually came through at 12.30pm - I'd been sitting there all that time! And as you'll have seen from this blog post, I got tickets!! :D
In the afternoon me and mum popped round to see my nan because although we'd returned her mobile phone on Mon we'd forgotten to return the charger too! I helped my nan sort out a few things on her computer while we were there. And on the way we called in at the local garden centre where mum bought some geraniums for the garden. I tried to persuade her to buy the red ones but she chose some pink ones instead.
Yesterday I discovered that my phone was playing up as although I could receive phone calls and texts I couldn't make them, it kept saying there was a connection error. I phoned my older brother Chris who knows about these kind of things and left a message on his answer machine asking for help. Also my phone alarmed low battery even though I'd charged it recently so that made me wonder if there was a problem with the battery too. The battery has seemed fine since though, so maybe it was just a one off thing.
Dad pointed out to me that there was a double page article in the local paper about ME so I found that to have a read. The article started off well but then went on to say how this sufferer had been cured by something called the Lightning Process and had then gone on to train as a teacher of the Lightning Process. There isn't a cure for ME although there are lots of people offering expensive cures that have no scientific evidence behind them. The Lightning Process is one of the most well known and some people are apparently miraculously cured by it although it sounds very doubtful to me. It costs a lot of money and there are lots of criticisms of it and no scientific proof that it works. So I thought it was a shame that the article in the local paper was so much about what a great cure the Lightning Process is. However, there was one small paragraph about criticisms of it, so at least they were acknowledged.
Today I got up early (9am) and me and mum headed into the city. We drove to the Park & Ride on the outskirts of the city (dropping Alf off in a local town on the way through) and then got a bus into the city centre. I enjoyed listening to Marina and the Diamonds on my iPod on the bus journey. Me and mum went on a long walk out of the city centre along a road with a few charity shops on. I bought 2 cheap books in one charity shop - one was a children's book that I used to like and one was a quick read. We stopped for drinks and then wandered back into town although we did have to ask for directions on the way! We walked for about an hour and a quarter in total then, which I was quite impressed with. When we got back into the city centre we met up with mum's friend for lunch in a cafe. I had a baked potato and we all chatted together. On the way out of the shop I picked up a local magazine because it had an interview with Diana Vickers in it. My tummy pains were bad while we were out :(
Me and mum then split up so she could go to her wool shop and I wandered round the shops but didn't buy anything. When me and mum split up I decided I'd better check to see if my phone was working and to my surprise it was :) So I'm not sure what the problem had been - maybe a network problem. I received a lovely text from Lizzy saying thanks for Mia's presents :) When I'd finished wandering round the shops I wanted to look in I still had a bit of time before I was due to meet up with mum so I found the films section in Waterstones and sat on a comfy sofa reading a book about Pixar animation :) Me and mum met back up, had drinks and some shortbread in a cafe (mum knocked our table which resulted in my glass of milk spilling over my jeans, whoops!) and went into a couple of shops (including M&S for some biscuits for me).
We then headed back to our car on the Park & Ride bus and then mum drove to Tesco on the edge of a local town where she had agreed to pick Alf up. Me and mum did a little Tesco shop while waiting for Alf. I was very pleased that I managed to resist buying Diana Vickers' album. It's on Spotify so I can listen to it for now without having the CD, so I decided to wait til the CD drops in price to buy it and be able to put it onto my iPod.
We dropped Alf off at home and went to our local Polling Station to vote. I saw the start of the BBC's election coverage and hope that the exit poll isn't representative of the actual results. The exit poll was created by asking random voters across the country who they'd voted for. And it suggested that we'll have a hung parliament with Conservatives getting the most seats, followed by Labour. It also suggested that Lib Dems will actually lose some seats. I'm supporting Lib Dems so I hope they do better than that. I do suspect that the Conservatives will win though :( I'm not watching the election coverage on TV tonight, I'll just check how the seats are going on the Internet before I go to bed and hear the final result when I get up tomorrow morn.
When we got home I saw my morning tablets out in the kitchen. I'd got up too early to take them this morn so put them out ready to take before we left the house. But I'd forgotten. Whoops! Think that's the first time I've ever done that. I took my Tac as soon as I got in plus the tabs that I only take in the morn and then tonight I took the tablets that I take twice a day minus my Tac. I think that should be ok as sometimes people have to delay taking their Tac if they're having a Tac blood test done at the hosp.
When we got home I also saw my post. Outnumbered series 2 on DVD arrived, so I'm really looking forward to watching that :) Unfortunately there was also something else waiting for me in the post. I opened it to discover my DLA renewal forms - arrrrgggghhh! The last time I applied for DLA was just after my transplant so lots of things have changed since then - my health problems related to my transplant have reduced but I've developed ME. Unfortunately people who have ME struggle to get DLA. I've got a few months to fill the forms out and dad said he'll help me with them, but I am still worried about it. I found the ESA forms hard, this is going to be even harder.
That's now my day to day updates completed but I'm going to do a couple more updates about other bits and pieces before my blog is completely up to date. It's definitely nearly there now though :)
Mon 3rd May was Bank Holiday Mon so there were some local carboot sales on that me and my parents decided to have a look at. First we went to a one off carboot sale in a pub carpark in a neighbouring village. There I bought a DVD called In America DVD for 50p, 7 DVDs that had been free with newspapers for a total of £1 and 15 CD cases for £1. It was very chilly while we were looking round and there were some light showers too so I left my parents still looking round and went back to sit in the car round the corner to warm up. While I was sitting in the car another shower started up which got quite heavy and then it started hailing. I was very smug sitting all warm and dry in the car. Dad sensibly found some shelter in the pub car park til the hail eased but mum decided to run back to the car in it. She got soaked!
We then went back home and dropped dad off because he'd decided the weather wasn't good enough to go to another carboot sale. Mum changed out of her wet clothes, we both wrapped up a bit warmer and then we headed out to the carboot sale we usually go to. There were not as many stalls there as there usually is and the DVDs were all £2 each rather than £1 each so I didn't buy anything. Mum picked up a few things though including a weird thing that moos like a cow! On the way home we called in to visit nan briefly and give her back her mobile phone that we'd sorted out for her. The phone in her new flat wasn't going to be reconnected til Wed so it was important that she could use her mobile til then.
On Tue 4th May I weighed myself like I'm now doing fortnightly. It was also my monthly weight to email my dieticians with. My weight was 54.3kg - so up 0.6kg on the previous fortnight and up a total of 1kg in a month. Both my dieticians were very impressed and are happy for me to keep weighing myself and contacting them monthly. I never thought I'd say this, but I don't really want to put any more weight on now. If my weight is up again next month then I'm going to ask my dieticians if I can stop my high calorie puddings because I don't really like them.
That morn I walked to the post office and the local shop and also walked round to the surgery to drop in a prescription for me. That aft I had to return to the local shop when mum discovered that she'd run out of washing liquid for the washing machine. When mum got back from work at the library she showed me her first knitting needle injury - somehow a knitting needle had attacked her leg through her bag and her jeans and had left a visible scratch. Her leg is fine now though.
That evening I went to another meeting of the teenage discussion group in the village. V wasn't there so it was just A and B who lead it, me, K and M. The discussion on Tue eve was very religious - yawn! We did have some interesting discussion, but I'm not sure how we got onto talking about whether knitting is divine or not?!?! Although I'm a very private person about my health I don't mind mentioning it when it's my choice and in my control, so I brought it into the conversation because I felt it was relevant. I started off by saying "I don't know how much you know [because I didn't know if K or M knew anything about my medical history] but I had a transplant a few years ago" I know A knows about it all because she knows my mum and I assumed A had told B everything. So I was really surprised when B said that she didn't know that! We had an interesting discussion about politics at the end. K isn't 18 until the summer so can't vote yet, but the rest of us could. Me, A and B all said that we would be voting Lib Dems and proceeded to discuss all the parties. M kept very quiet. He's very posh, privately educated and quite stuck up so I assumed his quietness was because he's a Conservative supporter! They were all talking about the different politicians they've had coming to their doors to try to swing their votes, but we've not had any of them this year which is probably because we've got a Lib Dems sign in our garden :)
Yesterday (Wed 5th May) I emailed S (the transplant co-ordinator at Hosp A) again because it was 6 weeks since she'd promised me an email and I'd still not heard anything. In this email I just asked if she could please reply to my email from March 22nd as she said she would in her email dated March 23rd. She replied very quickly saying that she'd not forgotten me but she'd been off work for a while. I've been promised a full reply by the end of the week so hopefully I will get that. Only 5 weeks to go til my transition is due to be completed and I'm still no happier about it, eek! I wish S had just dropped me a quick email letting me know that it would be a while til she managed a full reply. Replying 5 weeks later than promised isn't really fair on me - I'm supposed to be learning to trust this team!
Yesterday morning I got up at 8.45am (which is very early for me) because I'd heard the previous day that the presale for Marina and the Diamonds' Oct/Nov tour would start on the Wed. However it didn't say a time, so I got up so I could be at my laptop by 9am in case they went on sale then. I kept refreshing my email page because the link would be sent to me in an email and the email eventually came through at 12.30pm - I'd been sitting there all that time! And as you'll have seen from this blog post, I got tickets!! :D
In the afternoon me and mum popped round to see my nan because although we'd returned her mobile phone on Mon we'd forgotten to return the charger too! I helped my nan sort out a few things on her computer while we were there. And on the way we called in at the local garden centre where mum bought some geraniums for the garden. I tried to persuade her to buy the red ones but she chose some pink ones instead.
Yesterday I discovered that my phone was playing up as although I could receive phone calls and texts I couldn't make them, it kept saying there was a connection error. I phoned my older brother Chris who knows about these kind of things and left a message on his answer machine asking for help. Also my phone alarmed low battery even though I'd charged it recently so that made me wonder if there was a problem with the battery too. The battery has seemed fine since though, so maybe it was just a one off thing.
Dad pointed out to me that there was a double page article in the local paper about ME so I found that to have a read. The article started off well but then went on to say how this sufferer had been cured by something called the Lightning Process and had then gone on to train as a teacher of the Lightning Process. There isn't a cure for ME although there are lots of people offering expensive cures that have no scientific evidence behind them. The Lightning Process is one of the most well known and some people are apparently miraculously cured by it although it sounds very doubtful to me. It costs a lot of money and there are lots of criticisms of it and no scientific proof that it works. So I thought it was a shame that the article in the local paper was so much about what a great cure the Lightning Process is. However, there was one small paragraph about criticisms of it, so at least they were acknowledged.
Today I got up early (9am) and me and mum headed into the city. We drove to the Park & Ride on the outskirts of the city (dropping Alf off in a local town on the way through) and then got a bus into the city centre. I enjoyed listening to Marina and the Diamonds on my iPod on the bus journey. Me and mum went on a long walk out of the city centre along a road with a few charity shops on. I bought 2 cheap books in one charity shop - one was a children's book that I used to like and one was a quick read. We stopped for drinks and then wandered back into town although we did have to ask for directions on the way! We walked for about an hour and a quarter in total then, which I was quite impressed with. When we got back into the city centre we met up with mum's friend for lunch in a cafe. I had a baked potato and we all chatted together. On the way out of the shop I picked up a local magazine because it had an interview with Diana Vickers in it. My tummy pains were bad while we were out :(
Me and mum then split up so she could go to her wool shop and I wandered round the shops but didn't buy anything. When me and mum split up I decided I'd better check to see if my phone was working and to my surprise it was :) So I'm not sure what the problem had been - maybe a network problem. I received a lovely text from Lizzy saying thanks for Mia's presents :) When I'd finished wandering round the shops I wanted to look in I still had a bit of time before I was due to meet up with mum so I found the films section in Waterstones and sat on a comfy sofa reading a book about Pixar animation :) Me and mum met back up, had drinks and some shortbread in a cafe (mum knocked our table which resulted in my glass of milk spilling over my jeans, whoops!) and went into a couple of shops (including M&S for some biscuits for me).
We then headed back to our car on the Park & Ride bus and then mum drove to Tesco on the edge of a local town where she had agreed to pick Alf up. Me and mum did a little Tesco shop while waiting for Alf. I was very pleased that I managed to resist buying Diana Vickers' album. It's on Spotify so I can listen to it for now without having the CD, so I decided to wait til the CD drops in price to buy it and be able to put it onto my iPod.
We dropped Alf off at home and went to our local Polling Station to vote. I saw the start of the BBC's election coverage and hope that the exit poll isn't representative of the actual results. The exit poll was created by asking random voters across the country who they'd voted for. And it suggested that we'll have a hung parliament with Conservatives getting the most seats, followed by Labour. It also suggested that Lib Dems will actually lose some seats. I'm supporting Lib Dems so I hope they do better than that. I do suspect that the Conservatives will win though :( I'm not watching the election coverage on TV tonight, I'll just check how the seats are going on the Internet before I go to bed and hear the final result when I get up tomorrow morn.
When we got home I saw my morning tablets out in the kitchen. I'd got up too early to take them this morn so put them out ready to take before we left the house. But I'd forgotten. Whoops! Think that's the first time I've ever done that. I took my Tac as soon as I got in plus the tabs that I only take in the morn and then tonight I took the tablets that I take twice a day minus my Tac. I think that should be ok as sometimes people have to delay taking their Tac if they're having a Tac blood test done at the hosp.
When we got home I also saw my post. Outnumbered series 2 on DVD arrived, so I'm really looking forward to watching that :) Unfortunately there was also something else waiting for me in the post. I opened it to discover my DLA renewal forms - arrrrgggghhh! The last time I applied for DLA was just after my transplant so lots of things have changed since then - my health problems related to my transplant have reduced but I've developed ME. Unfortunately people who have ME struggle to get DLA. I've got a few months to fill the forms out and dad said he'll help me with them, but I am still worried about it. I found the ESA forms hard, this is going to be even harder.
That's now my day to day updates completed but I'm going to do a couple more updates about other bits and pieces before my blog is completely up to date. It's definitely nearly there now though :)
Wednesday, 5 May 2010
Getting up to date with April - part 6 (more day to day stuff)
On Tue 27th April I didn't do much. I did pop out to the local shop though to buy the latest Radio Times and in the evening I helped Alf cash the IOU I'd given him for his birthday at the start of month. He didn't have an iPod charger of his own so kept borrowing mine. If I let him take it out my room he'd forget to give it back so I then told him that he had to use mine in my bedroom. That wasn't ideal though so for his birthday I gave him an IOU for an iPod charger of his own up to the value of £10. The official charger in the local Apple shop cost an astonishing £37, but Alf found one on Amazon that looked fine but wasn't branded for just under £5 (including P&P) so I bought that for him on Tue. When the charger arrived on Fri I was a bit nervous that it might not be compatible with Alf's own iPod Mini or might not work, but it worked fine :)
On the morn of Wed 28th April I popped round to the surgery to collect my new suncream. It's only factor 30 (my previous one that I reacted to was factor 50), but I guess that'll do. It's a huge heavy tube, so I wont want to carry it around with me when I'm out, but it'll be fine to put on at home or in the car before I go out. After that I phoned Barnardo's and talked to the deputy manager again. She said that they would have some work for me to do that day so I agreed to go in after lunch.
As we were heading out I got bad stomach pains but decided to go anyway and see how they were when I got to Barnardo's. They were still quite bad when I got there but I decided to start volunteering and I could always finish early if I was in too much pain. I volunteered for an hour and my tummy was very painful for the first half hour :( But fine for the second half hour :) It was much quieter than the previous time I'd been in and I liked that. However some furniture had been moved around in the back room so I had even less room to move! The only other volunteer in was the deputy manager and she was quite grumpy so I didn't manage to get into conversation with her. It was nice that the clothes I had to hang up were folded and piled on the floor rather than just thrown in a heap.
I then met up with mum and we went for drinks in a cafe in town. After that we looked in a few charity shops where I picked up an Agatha Christie short story book, a 4 DVD set of 80s films (containing Pretty in Pink, Ferris Bueller's Day Off, Some Kind of Wonderful and Planes Trains and Automobiles) and a CD of rainforest sounds which I thought I might be able to listen to when trying to get to sleep at night. When I was in hospital for my transplant I found a CD called Temple in the Forest on the ward, which contained relaxing music that sounded like a forest. That helped me to relax and get to sleep but when I listen to it now it brings back memories of hosp which doesn't help to relax me. So I was pleased to find a CD that looked similar that I thought I might be able to listen to instead. However when I tried it out I discovered that it wasn't music, it was just rainforest sounds. I didn't find it very relaxing to listen to as there was an annoying background chirping sound constantly and then every so often there'd be another animal noise over the top of that which would make me jump! Then me and mum did a supermarket shop before heading home.
On Wed eve Claire came round. We had a lovely evening chatting, having tea, playing on the Wii and watching a film together. A few months ago Claire had asked me about giving a talk on organ donation to some of the students she teaches. She works at a unit which teaches children who can't attend school for behavioural or medical reasons - I met her when she taught me when I was too ill to go to school before my transplant. I'd said I'd get back to her about it but it was just one of those things I'd not managed to get round to. So on Wed I asked Claire if there was still time for me to do this before the end of term. Claire said that'd be great so we decided on a date - Wed 19th May. I'll be speaking to up to twelve GCSE year students, so they'll be about 16. Before then I need to look through the organ donation resources I've got and check I've got enough leaflets, fluffy bugs etc and I also need to plan my talk. I'm confident giving talks to adults, but teenagers seem quite a bit more daunting. And then of course I have no idea how well I'll be on the day. But it'll be great if I can do it to raise awareness of organ donation :)
On Thur 29th April I slept through my alarm (which always goes off at 10.30am so I can get up in time to take my morn Tac 12 hours after my eve Tac) and didn't wake up til 11.40am! Whoops. That put me out of sync for the whole day :P In the post I received some raffle tickets to sell to raise money for AYME and a very cute sock monster that I'd ordered from Lou's Folksy Shop (you can also see Lou's blog here). That morn I wrapped and parcelled up Rosie's birthday presents before taking the parcel round to the post office to send off to make sure it reached Rosie in time for her 18th birthday tomorrow. I was very surprised that she actually received it just 2 days later (I sent it 2nd class)! I also wrote and posted a long overdue letter to Kate - my AYME buddy.
I had a lovely evening watching a film with my mum. Then I got a bit frustrated because Facebook was playing up, but luckily it got sorted out within a couple of hours. Me and mum discussed the possibility of going on a family holiday to Center Parcs later in the year, but she's not mentioned this to dad yet, so it's only a dream at the moment. I'll let you know if it progresses any further.
Thur was one of those days where I realised how fantastic some of my friends are. I got a lovely PM from Rosie as I do every day, when I asked Lou if I could buy another sock monster from her for Mia's 4th birthday she said that she was happy to send her one for free, I received 2 very understanding responses from Michelle and J (who I met at the PINNT meet-up) when I sent them both a brief email to them to let them know that it might take me a few days to reply to their emails and I also received a lovely eCard from Michelle :)
On the morn of Fri 30th April me and mum headed out to a local garden centre that also sells books, clothes, pets, crafts and food for a browse round. We had some drinks in the cafe there and I saw a cute ferret in the pets section. Mum bought some plants for the garden and we bought a new house card for nan in preparation for her move the following day.
After that we headed into town to wander round the shops and do a supermarket shop. When I say town I mean one of our two local towns, we don't go into the same town each time :P I bought a Some Like it Hot DVD in Cash Converters and a deodorant. I also picked up a free local magazine in a charity shop because it included an interview with Marina and the Diamonds. Mum rarely buys DVDs and if she does she buys cheap ones (either reduced or second hand), but that day she bought Avatar on DVD! Mum saw it at the cinema with Alf so she was keen to see it again and for me to watch it too. We've not seen it yet though. We ate our lunch as we were walking round. While we were in Sainsburys I spotted a funny sign on the box of a Wii game which said "Warning! This product contains a security tag which is NOT MICROWAVABLE" I'm not sure why anyone would try to microwave a Wii game! :P Mum said that apparently some security tags can be removed by microwaving the product which might explain that label, but I still thought it was funny.
That eve Chris and Sophie popped round again.
On Sat 1st May my nan moved to another flat in her building. The flat she moved to is more spacious and lighter (due to more windows) than her old flat. Dad and Alf went to help out with her move in the morn and were joined by my uncle Danny and his wife Diane. Mum was at work in the morn and I stayed at home because I wasn't feeling too well but we went to join them after lunch. I didn't feel v well while we were there so wasn't of much help but it was nice to see my nan and my uncle and aunt. The move went smoothly :) I was made official photographer, but because everyone was busy it was difficult to get good photos. I had a go though so thought I'd share a few with you :)
Dad busy at work
Dad showing off the dancing he's practising for Glastonbury, eek!
Alf not very impressed that I'd taken a photo of him!
My aunt Diane with my mum
My nan
To be continued...
On the morn of Wed 28th April I popped round to the surgery to collect my new suncream. It's only factor 30 (my previous one that I reacted to was factor 50), but I guess that'll do. It's a huge heavy tube, so I wont want to carry it around with me when I'm out, but it'll be fine to put on at home or in the car before I go out. After that I phoned Barnardo's and talked to the deputy manager again. She said that they would have some work for me to do that day so I agreed to go in after lunch.
As we were heading out I got bad stomach pains but decided to go anyway and see how they were when I got to Barnardo's. They were still quite bad when I got there but I decided to start volunteering and I could always finish early if I was in too much pain. I volunteered for an hour and my tummy was very painful for the first half hour :( But fine for the second half hour :) It was much quieter than the previous time I'd been in and I liked that. However some furniture had been moved around in the back room so I had even less room to move! The only other volunteer in was the deputy manager and she was quite grumpy so I didn't manage to get into conversation with her. It was nice that the clothes I had to hang up were folded and piled on the floor rather than just thrown in a heap.
I then met up with mum and we went for drinks in a cafe in town. After that we looked in a few charity shops where I picked up an Agatha Christie short story book, a 4 DVD set of 80s films (containing Pretty in Pink, Ferris Bueller's Day Off, Some Kind of Wonderful and Planes Trains and Automobiles) and a CD of rainforest sounds which I thought I might be able to listen to when trying to get to sleep at night. When I was in hospital for my transplant I found a CD called Temple in the Forest on the ward, which contained relaxing music that sounded like a forest. That helped me to relax and get to sleep but when I listen to it now it brings back memories of hosp which doesn't help to relax me. So I was pleased to find a CD that looked similar that I thought I might be able to listen to instead. However when I tried it out I discovered that it wasn't music, it was just rainforest sounds. I didn't find it very relaxing to listen to as there was an annoying background chirping sound constantly and then every so often there'd be another animal noise over the top of that which would make me jump! Then me and mum did a supermarket shop before heading home.
On Wed eve Claire came round. We had a lovely evening chatting, having tea, playing on the Wii and watching a film together. A few months ago Claire had asked me about giving a talk on organ donation to some of the students she teaches. She works at a unit which teaches children who can't attend school for behavioural or medical reasons - I met her when she taught me when I was too ill to go to school before my transplant. I'd said I'd get back to her about it but it was just one of those things I'd not managed to get round to. So on Wed I asked Claire if there was still time for me to do this before the end of term. Claire said that'd be great so we decided on a date - Wed 19th May. I'll be speaking to up to twelve GCSE year students, so they'll be about 16. Before then I need to look through the organ donation resources I've got and check I've got enough leaflets, fluffy bugs etc and I also need to plan my talk. I'm confident giving talks to adults, but teenagers seem quite a bit more daunting. And then of course I have no idea how well I'll be on the day. But it'll be great if I can do it to raise awareness of organ donation :)
On Thur 29th April I slept through my alarm (which always goes off at 10.30am so I can get up in time to take my morn Tac 12 hours after my eve Tac) and didn't wake up til 11.40am! Whoops. That put me out of sync for the whole day :P In the post I received some raffle tickets to sell to raise money for AYME and a very cute sock monster that I'd ordered from Lou's Folksy Shop (you can also see Lou's blog here). That morn I wrapped and parcelled up Rosie's birthday presents before taking the parcel round to the post office to send off to make sure it reached Rosie in time for her 18th birthday tomorrow. I was very surprised that she actually received it just 2 days later (I sent it 2nd class)! I also wrote and posted a long overdue letter to Kate - my AYME buddy.
I had a lovely evening watching a film with my mum. Then I got a bit frustrated because Facebook was playing up, but luckily it got sorted out within a couple of hours. Me and mum discussed the possibility of going on a family holiday to Center Parcs later in the year, but she's not mentioned this to dad yet, so it's only a dream at the moment. I'll let you know if it progresses any further.
Thur was one of those days where I realised how fantastic some of my friends are. I got a lovely PM from Rosie as I do every day, when I asked Lou if I could buy another sock monster from her for Mia's 4th birthday she said that she was happy to send her one for free, I received 2 very understanding responses from Michelle and J (who I met at the PINNT meet-up) when I sent them both a brief email to them to let them know that it might take me a few days to reply to their emails and I also received a lovely eCard from Michelle :)
On the morn of Fri 30th April me and mum headed out to a local garden centre that also sells books, clothes, pets, crafts and food for a browse round. We had some drinks in the cafe there and I saw a cute ferret in the pets section. Mum bought some plants for the garden and we bought a new house card for nan in preparation for her move the following day.
After that we headed into town to wander round the shops and do a supermarket shop. When I say town I mean one of our two local towns, we don't go into the same town each time :P I bought a Some Like it Hot DVD in Cash Converters and a deodorant. I also picked up a free local magazine in a charity shop because it included an interview with Marina and the Diamonds. Mum rarely buys DVDs and if she does she buys cheap ones (either reduced or second hand), but that day she bought Avatar on DVD! Mum saw it at the cinema with Alf so she was keen to see it again and for me to watch it too. We've not seen it yet though. We ate our lunch as we were walking round. While we were in Sainsburys I spotted a funny sign on the box of a Wii game which said "Warning! This product contains a security tag which is NOT MICROWAVABLE" I'm not sure why anyone would try to microwave a Wii game! :P Mum said that apparently some security tags can be removed by microwaving the product which might explain that label, but I still thought it was funny.
That eve Chris and Sophie popped round again.
On Sat 1st May my nan moved to another flat in her building. The flat she moved to is more spacious and lighter (due to more windows) than her old flat. Dad and Alf went to help out with her move in the morn and were joined by my uncle Danny and his wife Diane. Mum was at work in the morn and I stayed at home because I wasn't feeling too well but we went to join them after lunch. I didn't feel v well while we were there so wasn't of much help but it was nice to see my nan and my uncle and aunt. The move went smoothly :) I was made official photographer, but because everyone was busy it was difficult to get good photos. I had a go though so thought I'd share a few with you :)
My mum looking like a pixie
My uncle Danny
Dad busy at work
Dad showing off the dancing he's practising for Glastonbury, eek!
Alf not very impressed that I'd taken a photo of him!
My aunt Diane with my mum
My nan
Tuesday, 4 May 2010
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.
Sunday, 2 May 2010
Getting up to date with April - part 3 (day to day stuff)
Tonight I'm going to start writing up what I've been up to each day since my last update. It's been about 3 weeks since my last blog post, so I'm going to split this up into a few shorter posts, rather than doing one massive one.
On Mon 12th April I wrote my last blog update. That afternoon my mum gave a talk at the city library about Knit Lit - the knitting and literature group that she runs at our village library. She's currently visiting various libraries across the county to help them set up their own Knit Lits. When she got home she said that the talk at the city library had gone well and that the members of the public that she spoke to seemed enthusiastic about setting up and running their own Knit Lit group there. However the city library hadn't advertised the event very well, so mum had to go out into the shopping centre with her giant needles to find some more people. We had all been quite nervous that she might get arrested walking through the shopping centre on her way to the talk because the case she carried her giant needles in looks rifle shaped! Luckily the shopping centre was almost deserted when she walked through it in the morning and with her purple hair and scarf I think she probably looked quite harmless. Here's a photo for you:
On the morn of Tue 13th April I just went out to the village post office. That afternoon Chris and Sophie and Claire popped round. I enjoyed Chris showing me some of the exciting things his iPhone does because he's going to pass it on to me when he gets an upgrade at the end of Sept. I currently spend less than £10 a month on my PAYG phone so worried that getting a contract for the iPhone (to allow me to use the Internet on it) would be much more expensive. Contracts are expensive if you get an iPhone with it, but if you already have the iPhone you can pay just £15 a month for unlimited Internet and texts and 300mins (which would be plenty enough for me). I think that sounds like a great deal :D Just got to wait til the end of Sept now! And I had a nice time playing on the Wii with Claire :) Later in the eve Alf's friend Sam popped round. He used to spend a lot of time at our house but hadn't been round for quite a while so it was nice to see him again.
On Tue evening I heard 2 lots of news. The first was that my friend A from Hosp B is pregnant! What exciting news for her. I heard it from a friend that day but have chatted to A over the Internet since. And the second lot of news was that my nan had been admitted to hosp after feeling very unwell at home :( Then the thought was that she'd just have to stay in overnight, but it turned into a longer stay than that. She's feeling much better now she's home, but I'll write more about that as my blog progresses.
On Wed 14th April me and mum went into a local town. We browsed round the charity shops at first where I bought 2 DVDs (50 First Dates and Speed). I then attended a Pathways to Work appt which went ok. I told my advisor how the volunteering had gone so far, so she suggested that I try try to gradually increase my volunteering and if I can get to the stage where I can manage a 6 hour stint once a week (eek!) then I can maybe look for a small job. She gave me an appt to see her next in 2 months rather than just 1 month. After my appt I met mum in a coffee shop for drinks and then we headed to the supermarket. On the way we saw a phone shop with a notice in the window about hiring part time staff so we took the phone number down for Alf. However when he phoned up a few days later they had no vacancies.
Me and mum split up on our way to the supermarket but agreed to meet in there. Once I got into the supermarket I couldn't find mum and ringing her phone got no answer. Her route to the supermarket would just have been through the carpark (to put some more money on the car) so she couldn't have got distracted in a shop. Eventually I got through to mum on the phone and then we met outside the supermarket. It turned out that as mum was sorting the carparking out she realised she'd lost her phone. She looked everywhere for it and retraced her steps around town but with no luck. When she returned to the car she decided to look underneath the car incase it'd fallen out of her bag, but it wasn't there. However as she turned her head to the side she spotted it lying under a car 2 cars away! So when I'd been ringing mum's phone it had been underneath a car which is why I'd got no response! That could only happen to my mum! After that the supermarket shop was uneventful and we headed home.
On Wed eve Chris and Sophie popped round to borrow a couple of my DVDs. Sam came round again but Alf was quite grumpy so he knitted with my mum instead.
On Thur 15th April I had an early start for an orthodontist appt at Hosp A in the city. As we were walking through the hosp concourse mum spotted some knitters (who she didn't know), so she had to go over and start a conversation with them! Mum also met someone she knew (the mum of a boy who was in Alf's year at primary school) in the orthodontist waiting room. My orthodontist appt went fine. My orthodontist was happy with my progress and said that all my gaps (including a new one) will close. I'm not sure about the new gap but will quiz him more next time I see him. He changed some elastics that are wrapped around my braces, which made my mouth quite sore for the next few days. I was given another appt for 7 weeks time. Me and mum then had drinks in the hosp cafe and our packed lunches in the car.
On the way back from the hosp we called in at a big Tesco on the route that I'd never been to before. It was huge! While we were there we bought a get well soon card for my nan. Later that afternoon me and mum went to see my nan in hosp. Some of my second cousins were there when we arrived and they'd cheered my nan up. They told us that the following weekend they'd got an audition for a CBBC programme called Copycats. We've been in touch with them since then and they had lots of fun at the audition but are still waiting to hear back about the outcome. Once they'd left we chatted to my Nan who seemed to be in good spirits and she said she'd had lots of visitors. At that point she was hoping to be home the next day. We didn't time our visit very well so ended up getting back to the car at 5pm. It took us 40mins to get out of the hosp grounds (just 2 short roads to get back onto the main road - it would usually take about 2/3mins) because of horrendous rush hour traffic! That evening I bought Outnumbered series 1 on the Internet :)
To be continued...
On Mon 12th April I wrote my last blog update. That afternoon my mum gave a talk at the city library about Knit Lit - the knitting and literature group that she runs at our village library. She's currently visiting various libraries across the county to help them set up their own Knit Lits. When she got home she said that the talk at the city library had gone well and that the members of the public that she spoke to seemed enthusiastic about setting up and running their own Knit Lit group there. However the city library hadn't advertised the event very well, so mum had to go out into the shopping centre with her giant needles to find some more people. We had all been quite nervous that she might get arrested walking through the shopping centre on her way to the talk because the case she carried her giant needles in looks rifle shaped! Luckily the shopping centre was almost deserted when she walked through it in the morning and with her purple hair and scarf I think she probably looked quite harmless. Here's a photo for you:
On the morn of Tue 13th April I just went out to the village post office. That afternoon Chris and Sophie and Claire popped round. I enjoyed Chris showing me some of the exciting things his iPhone does because he's going to pass it on to me when he gets an upgrade at the end of Sept. I currently spend less than £10 a month on my PAYG phone so worried that getting a contract for the iPhone (to allow me to use the Internet on it) would be much more expensive. Contracts are expensive if you get an iPhone with it, but if you already have the iPhone you can pay just £15 a month for unlimited Internet and texts and 300mins (which would be plenty enough for me). I think that sounds like a great deal :D Just got to wait til the end of Sept now! And I had a nice time playing on the Wii with Claire :) Later in the eve Alf's friend Sam popped round. He used to spend a lot of time at our house but hadn't been round for quite a while so it was nice to see him again.
On Tue evening I heard 2 lots of news. The first was that my friend A from Hosp B is pregnant! What exciting news for her. I heard it from a friend that day but have chatted to A over the Internet since. And the second lot of news was that my nan had been admitted to hosp after feeling very unwell at home :( Then the thought was that she'd just have to stay in overnight, but it turned into a longer stay than that. She's feeling much better now she's home, but I'll write more about that as my blog progresses.
On Wed 14th April me and mum went into a local town. We browsed round the charity shops at first where I bought 2 DVDs (50 First Dates and Speed). I then attended a Pathways to Work appt which went ok. I told my advisor how the volunteering had gone so far, so she suggested that I try try to gradually increase my volunteering and if I can get to the stage where I can manage a 6 hour stint once a week (eek!) then I can maybe look for a small job. She gave me an appt to see her next in 2 months rather than just 1 month. After my appt I met mum in a coffee shop for drinks and then we headed to the supermarket. On the way we saw a phone shop with a notice in the window about hiring part time staff so we took the phone number down for Alf. However when he phoned up a few days later they had no vacancies.
Me and mum split up on our way to the supermarket but agreed to meet in there. Once I got into the supermarket I couldn't find mum and ringing her phone got no answer. Her route to the supermarket would just have been through the carpark (to put some more money on the car) so she couldn't have got distracted in a shop. Eventually I got through to mum on the phone and then we met outside the supermarket. It turned out that as mum was sorting the carparking out she realised she'd lost her phone. She looked everywhere for it and retraced her steps around town but with no luck. When she returned to the car she decided to look underneath the car incase it'd fallen out of her bag, but it wasn't there. However as she turned her head to the side she spotted it lying under a car 2 cars away! So when I'd been ringing mum's phone it had been underneath a car which is why I'd got no response! That could only happen to my mum! After that the supermarket shop was uneventful and we headed home.
On Wed eve Chris and Sophie popped round to borrow a couple of my DVDs. Sam came round again but Alf was quite grumpy so he knitted with my mum instead.
On Thur 15th April I had an early start for an orthodontist appt at Hosp A in the city. As we were walking through the hosp concourse mum spotted some knitters (who she didn't know), so she had to go over and start a conversation with them! Mum also met someone she knew (the mum of a boy who was in Alf's year at primary school) in the orthodontist waiting room. My orthodontist appt went fine. My orthodontist was happy with my progress and said that all my gaps (including a new one) will close. I'm not sure about the new gap but will quiz him more next time I see him. He changed some elastics that are wrapped around my braces, which made my mouth quite sore for the next few days. I was given another appt for 7 weeks time. Me and mum then had drinks in the hosp cafe and our packed lunches in the car.
On the way back from the hosp we called in at a big Tesco on the route that I'd never been to before. It was huge! While we were there we bought a get well soon card for my nan. Later that afternoon me and mum went to see my nan in hosp. Some of my second cousins were there when we arrived and they'd cheered my nan up. They told us that the following weekend they'd got an audition for a CBBC programme called Copycats. We've been in touch with them since then and they had lots of fun at the audition but are still waiting to hear back about the outcome. Once they'd left we chatted to my Nan who seemed to be in good spirits and she said she'd had lots of visitors. At that point she was hoping to be home the next day. We didn't time our visit very well so ended up getting back to the car at 5pm. It took us 40mins to get out of the hosp grounds (just 2 short roads to get back onto the main road - it would usually take about 2/3mins) because of horrendous rush hour traffic! That evening I bought Outnumbered series 1 on the Internet :)
To be continued...
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 :)
Tuesday, 6 April 2010
Long update part 2
This is part 2 of my update. You can read part 1 here.
On Sat eve Claire came round for tea and brought her new boyfriend John with her. We'd never met John before, but he seemed very nice, much better than Claire's previous boyfriend! We chatted a lot, played on New Super Mario Bros Wii (which we made some good progress on) and all watched Dr Who together. If you missed it you can watch it here. I miss David Tennant, but thought I'd give Matt Smith a chance and he was much better than I expected. I thought the episode was a really good start to the series, although I thought it was much more funny than scary. I was expecting something very scary from Steven Moffat after some of his previous episodes such as The Empty Child, The Doctor Dances and Blink, but I'm sure we'll get some scary episodes as the series progresses. I'm looking forward to next week's episode. Matt Smith looks just like one of Alf's friends, so when he came round later that evening we had fun teasing him about it ;)
On Sunday I went to the carboot sale again with mum and dad. I took the wrong region DVDs with me to try to swap, but I couldn't remember what stalls I'd bought them from 3 weeks ago so I'm going to give up on that now. The carboot sale was much better than the previous couple of weeks and I came home with 6 DVDs (The Butterfly Effect, My Summer of Love, Just Married, The Bicentenial Man, How To Lose a Guy in 10 Days and I Capture The Castle) for £1 each and 2 PS1 games (Monopoly and Theme Park World) for £1 and 50p each. Mum bought some Get Well Soon Me2You bears for me to use as presents for people.
As well as the PS games I've bought from carboot sales I've also bought a few more from eBay - Worms 4 Mayhem which is a PS2 game and Crash Team Racing and Frogger which are PS1 games. I'm going to continue looking in charity shops and at carboot sales for games, but I don't plan to buy any more from eBay for the time being as there aren't any more I specifically want.
On Sun aft Chris and Sophie called round for a little while. I didn't go out yesterday and probably wont today either, as I'm just having a relaxing day at home. My family don't celebrate Easter, so we haven't done anything special this weekend but it was nice having dad at home yesterday (he had to work Good Friday though). Chris' grandma sent us an Easter card with two £5 notes in it - one for me and one for Alf :)
This week I have also helped mum produce some posters for library displays on the computer, done some crosswords from the Independent newspaper with my parents, attempted a few Sudoku puzzles, read my latest Official Nintendo Magazine, sorted through some old postcards that mum was throwing out and rescued some of places we've been to, rang up about an advert in the paper about some DVDs for sale (none I liked the sound of though) and emailed an friend from sixth form who I'd not been in touch with for quite a while. I've also been doing some pet research on the Internet which has led me to decide that ideally I'd like an African pygmy hedgehog or a chinchilla :) I'm now going to wait til I see my Hosp A consultant in June to ask him about the possibility of getting a pet. And this week I've cut my nails!!! They were very long as I'd not cut them for a couple of months, but one broke, so I decided to cut them all. I know they'll grow again but currently it feels very odd having short nails!
6 or 7 years ago my parents bought a 12 foot trampoline for our garden. We said goodbye to it at the weekend. I used to enjoy using it but since my transplant bouncing on it just made me feel ill. Dad never used it and mum only used it occasionally. Alf originally used it a lot but then didn't use it as much. Dad advertised the trampoline on Freecycle last week and 6 people were interested. Dad chose to give it to a family with 4 children under 11 as we thought they'd get the most use out of it. On Sat dad packed it up and it was collected. It's quite sad now it's gone as it had been in our garden for so long. On the lawn under where the trampoline was we have the start of 3 trees, a bramble and lots of other plans growing because birds used to go under there a lot. Mum and dad are glad they've got more room for growing vegetables in the garden now.
As well as playing on New Super Mario Wii with Claire and on my own, I've also enjoyed playing on my PS2 this week and testing some of my new games out now they've all arrived in the post. All of the ones I've bought from eBay and from charity shops have worked faultlessly. Most of the games I've bought from carboot sales have as well, apart from one. The one that doesn't work is Spyro Year of the Dragon but I bought it for only 30p from a carboot and didn't think it would work due to being so scratched. It was worth a gamble though at that price. I also received my PS1 memory card towards the end of last week so I can now save my progress on the PS1 games. Some of the games I've only played on briefly to check that they work, but I've played quite a bit more on Sonic Heroes and a new Sonic game that arrived in the post this week called Sonic Mega Collection, which includes quite a few old style Sonic games, which I prefer to the more modern ones :) I also started playing Canis Canem Edit (aka Bully) and really like what I've seen of it so far so am looking forward to playing on it some more. Grand Theft Auto: San Andreas made no sense at all to me though as I couldn't work out what I was supposed to do! I've lent it to Sophie at the moment, but when she returns it I'm going to ask her if she can help me get to grips with it. I've really enjoyed playing on Frogger because it's the same version that we got when we got our first computer 12 years ago so playing that is very nostalgic :)
This week I've listened to The Family Jewels by Marina and the Diamonds 4 times (can you tell I like it a lot?!) and Lights by Ellie Goulding once. I've tested my new pillow speaker with both of those albums too - The Family Jewels when I was resting in bed one day and didn't want to fall asleep and Lights before I went to sleep one night. Ellie Goulding's next single has been announced as being Guns and Horses and will be released on 7th May. Diana Vickers' debut single Once will be out in a week or two. I found a good interview with her here. I was disappointed that Lady Gaga and Beyonce got to number 1 with Telephone last weekend. I think it's a horrible song although I have to admit it is very catchy. I was glad that Scouting for Girls knocked them off the number one spot this Sun with This Aint A Love Song. I love that song and downloaded it to help them get to number one :)
My mum discovered a great group this week called The Baseballs. They're a German group who have released an album called Strike which is made up of really original 50s style rock and roll covers of well known pop songs such as Bleeding Love by Leona Lewis, Umbrella by Rhianna, Angels by Robbie Williams and Hot and Cold by Katy Perry. The album is on Spotify so if you've got that have a listen and see what you think. Or if not have a listen on Youtube using the links above.
After our hard disc recorder not working for weeks I formatted it (which completely wipes it including all the recorded programmes) and it then worked again! The remote was really frustrating because lots of key buttons didn't work, so dad bought a new one online, which works faultlessly. It's great being able to use the hard disc recorder again.
I couldn't believe it when Claudia Winkleman was named as the new host of Film 2010. Why why why?! I can't stand her and can't imagine anyone worse presenting it!
On TV this week as well as watching Ashes to Ashes and Doctor Who, I've also watched Doctor Who Confidential, the last episode of Tracy Beaker Returns, a rubbish programme about helicopter rescues with dad one evening while we were having tea, a couple of episodes of Embarrassing Bodies (I find medical programmes fascinating), Friday Night with Jonathan Ross (disappointingly Sandra Bullock wasn't on it despite the Radio Times saying she would be, but Matt Smith was on it), an episode of Bondi Vet, two episodes of Supernanny (it has been on E4 in the early hours of the morning when I'm nocturnal), the final episode of Married Single Other (what an odd series - the first 3 episodes were light-hearted and funny, the final 3 episodes were very sad), Ultimate Movie Toons (because Mika sang on it), 2 episodes of Children's Hospital, the final episode of One Born Every Minute, an episode of Countdown (because someone from AYME was on it), the first episode of a new BBC series called Great Ormond Street (which was really well made and very powerful, definitely worth watching as it's the best medical programme I've seen in a long time) and odd bits and pieces on the music channels.
I've finished watching some DVD boxsets since my last update. To finish Ashes to Ashes series 2 I watched episodes 4 to 8, the cast 80s quiz and the behind the scenes documentary. I also watched series 2 of Outnumbered on DVD (which I rented) plus the extra features. I've also bought the second series of Jam and Jerusalem on DVD.
This week I've watched quite a few films on DVD. Most were ones I'd not seen before, apart from Pixar's Cars which I rewatched. I enjoyed watching Nicholas' Gift (a moving film about organ donation based on a true story), The Diving Bell and the Butterfly (an artistically made and unusual film based on a true story about a French journalist who wrote a book while all his muscles apart from one eyelid had been paralysed due to a stroke), Sliding Doors (an original thought provoking film), Runaway Bride (a very funny Julia Roberts romcom) and Bride and Prejudice (a Bollywood take on Pride and Prejudice). Another film I watched was called The Darjeeling Express, but it was unusual and I don't think I really enjoyed it. And I watched an awful film called Closer. I rarely give up on films but I just couldn't finish this one as it was so bad - don't watch it!
In the post this week I received a letter from Tesco DVD rental with some vouchers for a 2 month free trial for me to give to friends. If anyone is interested in one leave a comment and I'll let you have the code.
I have no firm plans for the next couple of days but might pop into Barnardo's tomorrow if I feel up to it. On Thur eve I'm really looking forward to the return of a great TV series called Outnumbered. On Fri Claire is coming round and we're going to watch a DVD, play on the Wii (New Super Mario Bros Wii) and the PS2 (Harry Potter Quidditch World Cup) and have tea before mum and Claire go to mum's fortnightly knitting group. Mum's group is called Knit Lit and a couple of months ago a journalist attended one of their meetings. This month there is an article all about them in a local magazine!
On Sat I hope to attend an AYME meet-up, which is being organised by the same girl who's meet-up I went to before Christmas. That'll depend on how I feel though because to get there involves a 30min car journey, a 40min train ride and then a taxi journey. And hopefully on Sun we'll browse round the carboot sale again. Next week and the following week are full of medical appts and other commitments, so that'll be hectic! I'll blog about that nearer the time though.
On Sat eve Claire came round for tea and brought her new boyfriend John with her. We'd never met John before, but he seemed very nice, much better than Claire's previous boyfriend! We chatted a lot, played on New Super Mario Bros Wii (which we made some good progress on) and all watched Dr Who together. If you missed it you can watch it here. I miss David Tennant, but thought I'd give Matt Smith a chance and he was much better than I expected. I thought the episode was a really good start to the series, although I thought it was much more funny than scary. I was expecting something very scary from Steven Moffat after some of his previous episodes such as The Empty Child, The Doctor Dances and Blink, but I'm sure we'll get some scary episodes as the series progresses. I'm looking forward to next week's episode. Matt Smith looks just like one of Alf's friends, so when he came round later that evening we had fun teasing him about it ;)
On Sunday I went to the carboot sale again with mum and dad. I took the wrong region DVDs with me to try to swap, but I couldn't remember what stalls I'd bought them from 3 weeks ago so I'm going to give up on that now. The carboot sale was much better than the previous couple of weeks and I came home with 6 DVDs (The Butterfly Effect, My Summer of Love, Just Married, The Bicentenial Man, How To Lose a Guy in 10 Days and I Capture The Castle) for £1 each and 2 PS1 games (Monopoly and Theme Park World) for £1 and 50p each. Mum bought some Get Well Soon Me2You bears for me to use as presents for people.
As well as the PS games I've bought from carboot sales I've also bought a few more from eBay - Worms 4 Mayhem which is a PS2 game and Crash Team Racing and Frogger which are PS1 games. I'm going to continue looking in charity shops and at carboot sales for games, but I don't plan to buy any more from eBay for the time being as there aren't any more I specifically want.
On Sun aft Chris and Sophie called round for a little while. I didn't go out yesterday and probably wont today either, as I'm just having a relaxing day at home. My family don't celebrate Easter, so we haven't done anything special this weekend but it was nice having dad at home yesterday (he had to work Good Friday though). Chris' grandma sent us an Easter card with two £5 notes in it - one for me and one for Alf :)
This week I have also helped mum produce some posters for library displays on the computer, done some crosswords from the Independent newspaper with my parents, attempted a few Sudoku puzzles, read my latest Official Nintendo Magazine, sorted through some old postcards that mum was throwing out and rescued some of places we've been to, rang up about an advert in the paper about some DVDs for sale (none I liked the sound of though) and emailed an friend from sixth form who I'd not been in touch with for quite a while. I've also been doing some pet research on the Internet which has led me to decide that ideally I'd like an African pygmy hedgehog or a chinchilla :) I'm now going to wait til I see my Hosp A consultant in June to ask him about the possibility of getting a pet. And this week I've cut my nails!!! They were very long as I'd not cut them for a couple of months, but one broke, so I decided to cut them all. I know they'll grow again but currently it feels very odd having short nails!
6 or 7 years ago my parents bought a 12 foot trampoline for our garden. We said goodbye to it at the weekend. I used to enjoy using it but since my transplant bouncing on it just made me feel ill. Dad never used it and mum only used it occasionally. Alf originally used it a lot but then didn't use it as much. Dad advertised the trampoline on Freecycle last week and 6 people were interested. Dad chose to give it to a family with 4 children under 11 as we thought they'd get the most use out of it. On Sat dad packed it up and it was collected. It's quite sad now it's gone as it had been in our garden for so long. On the lawn under where the trampoline was we have the start of 3 trees, a bramble and lots of other plans growing because birds used to go under there a lot. Mum and dad are glad they've got more room for growing vegetables in the garden now.
As well as playing on New Super Mario Wii with Claire and on my own, I've also enjoyed playing on my PS2 this week and testing some of my new games out now they've all arrived in the post. All of the ones I've bought from eBay and from charity shops have worked faultlessly. Most of the games I've bought from carboot sales have as well, apart from one. The one that doesn't work is Spyro Year of the Dragon but I bought it for only 30p from a carboot and didn't think it would work due to being so scratched. It was worth a gamble though at that price. I also received my PS1 memory card towards the end of last week so I can now save my progress on the PS1 games. Some of the games I've only played on briefly to check that they work, but I've played quite a bit more on Sonic Heroes and a new Sonic game that arrived in the post this week called Sonic Mega Collection, which includes quite a few old style Sonic games, which I prefer to the more modern ones :) I also started playing Canis Canem Edit (aka Bully) and really like what I've seen of it so far so am looking forward to playing on it some more. Grand Theft Auto: San Andreas made no sense at all to me though as I couldn't work out what I was supposed to do! I've lent it to Sophie at the moment, but when she returns it I'm going to ask her if she can help me get to grips with it. I've really enjoyed playing on Frogger because it's the same version that we got when we got our first computer 12 years ago so playing that is very nostalgic :)
This week I've listened to The Family Jewels by Marina and the Diamonds 4 times (can you tell I like it a lot?!) and Lights by Ellie Goulding once. I've tested my new pillow speaker with both of those albums too - The Family Jewels when I was resting in bed one day and didn't want to fall asleep and Lights before I went to sleep one night. Ellie Goulding's next single has been announced as being Guns and Horses and will be released on 7th May. Diana Vickers' debut single Once will be out in a week or two. I found a good interview with her here. I was disappointed that Lady Gaga and Beyonce got to number 1 with Telephone last weekend. I think it's a horrible song although I have to admit it is very catchy. I was glad that Scouting for Girls knocked them off the number one spot this Sun with This Aint A Love Song. I love that song and downloaded it to help them get to number one :)
My mum discovered a great group this week called The Baseballs. They're a German group who have released an album called Strike which is made up of really original 50s style rock and roll covers of well known pop songs such as Bleeding Love by Leona Lewis, Umbrella by Rhianna, Angels by Robbie Williams and Hot and Cold by Katy Perry. The album is on Spotify so if you've got that have a listen and see what you think. Or if not have a listen on Youtube using the links above.
After our hard disc recorder not working for weeks I formatted it (which completely wipes it including all the recorded programmes) and it then worked again! The remote was really frustrating because lots of key buttons didn't work, so dad bought a new one online, which works faultlessly. It's great being able to use the hard disc recorder again.
I couldn't believe it when Claudia Winkleman was named as the new host of Film 2010. Why why why?! I can't stand her and can't imagine anyone worse presenting it!
On TV this week as well as watching Ashes to Ashes and Doctor Who, I've also watched Doctor Who Confidential, the last episode of Tracy Beaker Returns, a rubbish programme about helicopter rescues with dad one evening while we were having tea, a couple of episodes of Embarrassing Bodies (I find medical programmes fascinating), Friday Night with Jonathan Ross (disappointingly Sandra Bullock wasn't on it despite the Radio Times saying she would be, but Matt Smith was on it), an episode of Bondi Vet, two episodes of Supernanny (it has been on E4 in the early hours of the morning when I'm nocturnal), the final episode of Married Single Other (what an odd series - the first 3 episodes were light-hearted and funny, the final 3 episodes were very sad), Ultimate Movie Toons (because Mika sang on it), 2 episodes of Children's Hospital, the final episode of One Born Every Minute, an episode of Countdown (because someone from AYME was on it), the first episode of a new BBC series called Great Ormond Street (which was really well made and very powerful, definitely worth watching as it's the best medical programme I've seen in a long time) and odd bits and pieces on the music channels.
I've finished watching some DVD boxsets since my last update. To finish Ashes to Ashes series 2 I watched episodes 4 to 8, the cast 80s quiz and the behind the scenes documentary. I also watched series 2 of Outnumbered on DVD (which I rented) plus the extra features. I've also bought the second series of Jam and Jerusalem on DVD.
This week I've watched quite a few films on DVD. Most were ones I'd not seen before, apart from Pixar's Cars which I rewatched. I enjoyed watching Nicholas' Gift (a moving film about organ donation based on a true story), The Diving Bell and the Butterfly (an artistically made and unusual film based on a true story about a French journalist who wrote a book while all his muscles apart from one eyelid had been paralysed due to a stroke), Sliding Doors (an original thought provoking film), Runaway Bride (a very funny Julia Roberts romcom) and Bride and Prejudice (a Bollywood take on Pride and Prejudice). Another film I watched was called The Darjeeling Express, but it was unusual and I don't think I really enjoyed it. And I watched an awful film called Closer. I rarely give up on films but I just couldn't finish this one as it was so bad - don't watch it!
In the post this week I received a letter from Tesco DVD rental with some vouchers for a 2 month free trial for me to give to friends. If anyone is interested in one leave a comment and I'll let you have the code.
I have no firm plans for the next couple of days but might pop into Barnardo's tomorrow if I feel up to it. On Thur eve I'm really looking forward to the return of a great TV series called Outnumbered. On Fri Claire is coming round and we're going to watch a DVD, play on the Wii (New Super Mario Bros Wii) and the PS2 (Harry Potter Quidditch World Cup) and have tea before mum and Claire go to mum's fortnightly knitting group. Mum's group is called Knit Lit and a couple of months ago a journalist attended one of their meetings. This month there is an article all about them in a local magazine!
On Sat I hope to attend an AYME meet-up, which is being organised by the same girl who's meet-up I went to before Christmas. That'll depend on how I feel though because to get there involves a 30min car journey, a 40min train ride and then a taxi journey. And hopefully on Sun we'll browse round the carboot sale again. Next week and the following week are full of medical appts and other commitments, so that'll be hectic! I'll blog about that nearer the time though.
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