Yesterday I received an appt to see my gynaecologist through the post for a Tue in Dec. Unfortunately it's a date my mum is going to give a knitting talk at another library so to attend that appt I'd either have to get a lift there and back from dad when he went to work, so spend all day at the hosp/in the city, or come home on the buses which isn't simple. Due to having no idea how I'll feel on that day I decided to try to rearrange it to a time when mum will be able to take me. I was worried I'd have to wait a lot longer because my gynaecologist is often very busy, but I've got an appt for less than a fortnight later on a date my mum isn't working. It is the day before Christmas Eve though.
At my last clinic appt I mentioned to my consultant that I had an uncomfortable bulge in the side of my abdomen when I lay down. It's not a hernia but it is a weakening of the muscles in my abdomen as a result of all my operations. I can't do anything about it though. Luckily it's not causing me any problems at the moment but sometimes it's quite uncomfortable.
I was struggling with dizzy spells when I wrote my last update. They got a lot better but I've had a few spells of them since then. I thought things had settled down til yesterday when they returned again.
Since I've put on the last couple of kilograms of weight I've developed stretch marks on my legs. When I mentioned this to my consultant he said that I'm more prone to them because I'm on steroids.
I've been having lots of coldsores recently. I wondered if they were being triggered by the sun but they don't seem to be because they come up even when I've not been out in the sun. I hate them, grrr.
I've had my ears pierced since I was about 10 and have always been very lucky in that I've been able to wear any earrings. But recently I seem to have developed an allergy to cheap earrings. It's nothing major in the grand scheme of things but it is frustrating because I have lots of earrings that aren't gold or silver.
I found that my skin was very itchy last month ago and I couldn't work out why. It turned out that mum had changed the soap and I must have reacted to it. So swapping back to our normal soap solved the problem :)
In May I received the dreaded DLA renewal forms in the post, eek! They were last filled out quite soon after my transplant so quite a lot had changed since then - I'd recovered from the transplant but had developed ME. Dad used to fill my DLA forms in for me, but this time I did it myself, with some assistance from dad. I did it online in June and didn't find it too stressful. I heard the result in July - my care rate had dropped from higher rate to lower rate. I think that was a fair outcome, but that now means I'm adjusting to quite a drop in income. And I was very relieved I didn't have to have a medical assessment.
We were able to have our loft properly insulated last month for free because I receive DLA, so that should enable us to save some money on our heating.
I've recently set myself up a second bank account which will be better for saving money as it's got a higher interest rate than my original account.
I also renewed my CEA card earlier in the year.
I think I'd stopped volunteering at Barnardo's last time I updated, but I can't remember. Anyway I quit that because none of the other volunteers spoke to me so I found it very lonely work. I intended to find another volunteering job (like my Pathways to Work advisor encouraged me to) but haven't done that yet. Although I do do some voluntary work for AYME - I write (although not as regularly as I should) to a girl who is severely affected by ME, I provide feedback on each issue of AYME's bi-monthly magazine and I am the local contact for my county (so I put young people within my county in touch with each other and hope to organise a local meet-up soon). I did apply for a postion as a moderator on the AYME forums in the summer, but I didn't get the job. I suspect it may have been because I've not been on the forums very long - it's just over a year now but it was less than a year when I applied for this position a few months ago. My Pathway to Work advisor was made redundant so I won't be seeing her any more.
As I just mentioned, I've been a member of AYME for just over a year now. They are a fantastic charity which provides lots of support for young people aged under 26 who suffer from ME. I've found their forums invaluable as through them I've met lots of people who understand what I'm going through and I've made some great friends :)
My focus and concentration (which are affected by my ME) haven't changed significantly but I did manage to read some short stories and even a whole novel in the summer :D I'm still struggling to read though and I've not read any novels since that one as it just takes too much effort to make it enjoyable. Although having said that, a novel by an author I like came into the library recently so I think I'll give that a try. I can still manage to watch films and TV when I'm not too exhausted, but I think I'll talk about that more in another update.
I've recently made a new friend with ME. I've got lots of online friends, but Rebecca lives in the same village as me. She met mum through using the library a lot and then mum introduced her to me. We've only met up a couple of times so far but we got on really well (despite her being quite a bit older than me) and I'm looking forward to seeing her more :)
In July it was my 2 year ME anniversary. And back in May it was my 3 and a half year transplant anniversary, next month it'll be 4 years. I've not been in touch with my donor's sisters for a while so I need to get back in touch with them soon.
I recently heard from the chair of a fantastic charity called PINNT which supports people on enteral and IV feeding. I used to be quite involved with this support group when I was younger but obviously since my transplant I've become a bit more distant from them because I'm no longer on TPN. I did go to the meet-up in my county earlier in the year though. I know C, the chair, very well, so it was lovely to get an email from her. She asked about how I was and then asked if I'd like to give a presentation about being on TPN and then the decision to have a transplant and the PINNT weekend next year. So of course I said yes :) Mum or dad will talk too and maybe my consultant from Hosp A. I've got a further email since then with a few more details. C has asked me to talk for about 20mins which is a very long time, but hopefully if I can include a question and answer session then that should be fine. C thinks it'll be a very thought provoking session and I'm hoping that as well as getting people thinking (and hopefully signing up to the organ donor register), it will also reassure people who may need a small bowel transplant in the future.
On May 19th I gave a talk about organ donation to a group of teenagers. I was very nervous beforehand because although I'd spoken to hundreds of adults before I'd never given a talk to teenagers. However it went really well and I got them all talking about organ donation and a couple even filled out the forms there and then. One girl misunderstood what I was asking of her and thought that I wanted her to donate her organs while she was still alive. Despite that she still filled out the form.
Please don't forget to spread the word about organ donation by sharing the video I posted here to help to prevent unnecessary deaths like Kennedy's.
Showing posts with label volunteering. Show all posts
Showing posts with label volunteering. Show all posts
Monday, 11 October 2010
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
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
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