A few months ago my friend Lizzy gave me a voucher for a 2 month free trial with Tesco's DVD rental service, which was put in a pile on my desk and forgotten about. However, last weekend Lizzy was telling me all about her experience with Tesco's DVD rental and reminded me about the voucher. So earlier this week I signed up for my free trial. I had to choose between 20 and 60 DVDs that I'd like to rent and then at random 2 were picked and posted out to me. Once I return one DVD, another one will be sent out. It sounds great and I'm looking foward to watching my first 2 rented DVDs this week. I think I might continue it after the free trial as the monthly fee seems very reasonable. There are different price packages you can choose from, so if you want to find out more, click here.
I watched an interesting DVD yesterday called 'Let The Right One In' which I borrowed from my local library. It was a vampire film, but there was a deeper story behind that about the relationship between 2 children who were the main characters. I don't think it was a brilliant film, but it was definitely very well made and original. If anyone reading this has seen the film, please let me know what you thought. The next DVD I plan to watch (which I've rented) is Hairspray, as I've heard it's supposed to be very good.
Since I went back onto my overnight feeds on Monday I've been very nocturnal, getting to sleep around 2am most nights, which is very frustrating. When I had my first appointment at the ME clinic, they suggested that my GP should prescribe me a tablet called Melatonin, which would help normalise my sleep pattern. However, I heard from my GP earlier in the week and apparently Melatonin isn't licensed in the UK! Hospitals can prescribe it (whch is how I managed to have it for a short period after my transplant), but GPs cant, and my Primary Care Trust (PCT) won't usually prescribe it. So my GP is going to speak to the PCT and get back to me, but it looks like it won't be simple to get it. However I've spoken to other parents in the transplant community and apparently there are ways to get hold of Melatonin (such as through the pharmacy of my local hospital or through the healthcare company that deliver one of my anti-rejetion drugs), so I'm going to investigate these options futher. It's just frustating because I know my lack of sleep really isn't helping my health at the moment.
At my first appointment with the ME clinic I briefly met and chatted to an occupational therapist (OT), L. She explained the need for me to fill out an activity diary and then return for another appointment to learn how best to manage my energy, but said that my next appointment would probably be with a different OT because she was leaving in early September. But because I filled out and returned my activity diary so quickly, L rang yesterday to see if she could fit an appointment in to see me before she leaves at the end of this week. So I'm going to meet with her at the clinic on Thursday morning. Am feeling very optimistic about that appointment, so will let you know how it goes.
I've joined a fantastic charity called AYME for young people with ME. It has lots of resources available online and some online forums to talk to other people with ME, which I'm finding very useful.
I heard from my dietician earlier this week after I emailed her my weight on Tuesday. She was sorry we'd not had more time to discuss a plan for the feeds during the clinic, but proposed a plan in the email. Once I put on another 1.5kgs I can reduce my feeds to enable me to have one night off per week. Then she would like me to put on another 4kgs after that (which will take me to 2kgs over my target weight) before we stop the feeds completely. The extra 2kgs will be a safety net incase my appetite doesn't come back as soon as we stop the feeds. If all goes to plan my dietician thinks I might be able to come off the feeds completely by somepoint in December :D My appetite has decreased since I went back onto feeds, but I'm not too worried as I expect it will come back when we begin to decrease the feeds. And my tummy aches got worse when I started back on feeds, but seem to be improving now, fingers crossed.
Most children who need overnight enteral feeds keep an NG (naso gastric) tube in all the time. However, to appear normal in the daytime, I put my tube in every evening and then remove it the next morning when my feed has finished. Overnight I secure my tube with a piece of medical tape to hold it in place on my cheek. I imagine this is probably fine for people who keep their tube in all the time, but with removing the tape every morning, the tape keeps pulling little bits of skin off my cheek with it - oww! And it leaves my cheek looking very red during the day. So I need to find another solution. I've tried other types of tape before, but they either seem to stick too well (and not come off) or not stick well enough to hold the tube in place. I've tried soaking the current tape before removing it in the mornings, but that doesn't really help. So I'll let you know when I find a solution, but hopefully it wont take too long, as my cheek is getting very sore.
On Thursday morning I visited my local hospital to have 4 teeth extracted. I was very scared beforehand because I've never had a filling and have only had one extraction before, but that was just a baby tooth and I was very ill at the time, so can't really remember it. Before the extractions I saw my orthodontist who removed the brackets of my brace from the 4 teeth that were to be extracted. He also told me that once I'd had the extractions the rest of my orthodontic treatment would be very straightforward and shouldn't take too long, as it would just be a case of tightening my braces regularly to make my teeth spread out and fill the gaps. The surgeon doing the extractions was very nice and him and the nurse tried to reassure me as best they could. First a numbing gel was put on my gums to numb them before the injections. Then I had 8 injections and they were really really painful :( After that the actual extractions didn't hurt at all. I stayed in recovery for a while waiting for the bleeding to stop and then headed home. I found it very odd to have a completely numb mouth as it wasn't something I'd experienced before. I took regular painkillers for the first 48 hours, but my mouth hasn't been sore at all :) However I did have a bad headache from early Thursday afternoon til last night, which I suspect may have been related to the extractions. But I'm fine now.
Very annoyingly my braces broke this afternoon (one of the wires came out of the end bracket), so I'm going to phone the orthodontist on Tuesday to try to make an emergency appointment this week. However, I've got a very busy week coming up, so hope I can fit an appointment in somewhere and that I wont be too tired. My braces are fine at the moment, but the lose bit of wire is quite long (because the final bracket that it slipped out of was next to a hole where a tooth was extracted), so I'm concerned that it could become very uncomfortable.
Thursday was also GCSE results day for my brother and some of my friends. Alfie is very clever, but can't be bothered with school at all and so did a total of about 5 minutes revision for all of his GCSEs! He needed 5 A* to C grades to get a place at his chosen sixth form and although he was very confident, we were worried. But he did it - he acheived 3 Bs, 3 Cs and 1 E. Well done Alf :D And all my friends who took GCSEs this year were very happy with their results :)
This afternoon I attended a family get-together at my aunt's house. My dad's side of the family is huge (my dad was one of 5 children and all of his siblings have had children and a lot of them have had children), but even without everyone being able to attend, there were about 30 relatives at my aunt's house this afternoon. The purpose of the get-together was to meet baby Theo who is just 2 weeks old, awww. It wasn't as chaotic as I'd expected, but I found it very overwhelming with so many people there. I wasn't feeling great (very tired), so found it quite an effort to be sociable. And although I'm confident in the company of people I know well, I can be very shy around strangers, which is what happened this afternoon because my family is so big and we've not been to a get together for a while, so I don't feel like I really knew many of them very well. And everyone seemed to know all about me because I've been so ill, but that made me feel quite uncomfortable because I didn't know what they knew about me and I don't like it when everyone seems to know all about me. And everyone else seemed so confident which just made me more shy :( But there were some positives - I saw my nan, I chatted to a couple of my closest cousins and I met and held baby Theo (who is adorable) :D And I discovered that the girlfriend of one of my cousins has ME! I didn't feel comfortable chatting to her about it in front of everyone else, but I've got her email address, so am going to email her :)
I watched The X Factor this evening to relax once I got home from the family get-together. I was amazed at how strong the girl from Trinidad and Tobago's voice was, I think she's a definite conteder to win the whole competition this year. Back in June I recorded a 2 part programme called Famous, Rich and Homeless on the BBC. 5 celebrities experienced homelessness for 10 days. I watched it with my parents earlier this week and it really was an eye-opening programme and definitely made me think. I recorded a fantastic programme about Mika on Channel 4 last night called Mika: Through the Looking Glass. He was interviewed and performed 5 songs from his new album, The Boy Who Knew Too Much. You can find out more, including the dates and times when it will be repeated on 4music and how to watch it online, by clicking here. If you watch it, please let me know what you think. I can't wait for the release of Mika's second album and have asked my parents for it for a late birthday present. I've already heard more than half of the songs from it (at concerts and on the Internet) and it sounds like it's going to be incredible :D
It's my birthday 2 weeks today and I'll be 19 :D I haven't decided yet how I'll celebrate, but I know I'll spend the day (which is a Saturday this year) with my friend Claire. We're currently thinking of having a movie marathon, but I'm not sure.
Sorry for such a long update, I hope it's not been too bad to read. Hopefully my next one will be shorter, but with a busy week coming up I can't promise anything!
Saturday, 29 August 2009
Tuesday, 25 August 2009
New baby cousins, a great weekend and a weight gain at last!
I forgot to mention on my last blog update that I gained 3 new baby second cousins last weekend :) On Saturday 15th August my cousin K and her partner J had their first baby - a little boy called T. I've seen one photo so far and he's very cute! I'm looking forward to meeting him at a family get together next Saturday, when he'll be just 2 weeks old, awww! And then on Monday 17th August another cousin J and her partner G had twin boys called C and G, who will be little brothers for their 2 year old boy - S. I've not seen any photos of C and G yet, but hope to soon. Babies are so cute :)
This weekend I went to stay with my best friend Lizzy, her husband H and her adorable 3 year old daughter M for 2 nights. I've wanted to stay with them for a while, but this was the first time I managed to work it with my health and my enteral feeds. I had a fantastic time :D Mum took me there on Saturday after she'd finished work (the drive took about an hour and a half). She then stayed for the afternoon and for tea, before heading home. Saturday evening I babysat for M, so Lizzy and H could go out for a meal. That went really smoothly and M didn't wake once. I watched the first episode of this year's X Factor :D On Sunday we just relaxed around their house because I had tummy ache and Lizzy was very tired. We spent a lot of time in the garden because the weather was very hot, but also very windy. Sitting under a plum tree wasn't a clever idea in the wind! We had a lovely meal that night and I ate more than I had in ages! Lizzy's husband H is from Burma, so he cooked a very yummy Chin (his region of Burma) chicken meal. Then once M went to bed and H went off to work, me and Lizzy had a lovely evening together, chatting and watching films. I'd highly recommend the film Sister Act if you've not seen it. On Monday I really struggled with tummy ache, but managed a walk round their local park with Lizzy and M (who had great fun on her bike and in the playground). Then yesterday afternoon I came home on the train.
I'm very tired today, but I think that's just to be expected after running around with a 3 year old for a couple of days! Am doing odd jobs this morning - sending texts, making phone calls, catching up on emails etc - and then this afternoon I'm going to collect my laptop from the computer repair shop in town (it only cost £10 for them to fix the key that had fallen off the keyboard!) and then probably relax and watch a film with mum.
This morning was the day I weigh myself and email my dietician, so I was very pleased to find that I'd gained a small amount of weight :) During the last week I've had 4 nights on enteral feeds (but only half volume, as I've got to build up to the full volume gradually), so I'm feeling optimistic that once I get up to full volume on the feeds my weight will increase quite quickly, so I wont have to be on the feeds for too long. Fingers crossed.
This weekend I went to stay with my best friend Lizzy, her husband H and her adorable 3 year old daughter M for 2 nights. I've wanted to stay with them for a while, but this was the first time I managed to work it with my health and my enteral feeds. I had a fantastic time :D Mum took me there on Saturday after she'd finished work (the drive took about an hour and a half). She then stayed for the afternoon and for tea, before heading home. Saturday evening I babysat for M, so Lizzy and H could go out for a meal. That went really smoothly and M didn't wake once. I watched the first episode of this year's X Factor :D On Sunday we just relaxed around their house because I had tummy ache and Lizzy was very tired. We spent a lot of time in the garden because the weather was very hot, but also very windy. Sitting under a plum tree wasn't a clever idea in the wind! We had a lovely meal that night and I ate more than I had in ages! Lizzy's husband H is from Burma, so he cooked a very yummy Chin (his region of Burma) chicken meal. Then once M went to bed and H went off to work, me and Lizzy had a lovely evening together, chatting and watching films. I'd highly recommend the film Sister Act if you've not seen it. On Monday I really struggled with tummy ache, but managed a walk round their local park with Lizzy and M (who had great fun on her bike and in the playground). Then yesterday afternoon I came home on the train.
I'm very tired today, but I think that's just to be expected after running around with a 3 year old for a couple of days! Am doing odd jobs this morning - sending texts, making phone calls, catching up on emails etc - and then this afternoon I'm going to collect my laptop from the computer repair shop in town (it only cost £10 for them to fix the key that had fallen off the keyboard!) and then probably relax and watch a film with mum.
This morning was the day I weigh myself and email my dietician, so I was very pleased to find that I'd gained a small amount of weight :) During the last week I've had 4 nights on enteral feeds (but only half volume, as I've got to build up to the full volume gradually), so I'm feeling optimistic that once I get up to full volume on the feeds my weight will increase quite quickly, so I wont have to be on the feeds for too long. Fingers crossed.
Friday, 21 August 2009
Activity diary, hospital clinic and computer shopping
This week I've been keeping an activity diary for the ME clinic. The aim of it is to get an idea of what my activity is like at the moment and then once I've sent it back I'll receive an appointment with an occupational therapist to learn how best to manage my energy levels. I finished the diary on Wednesday so posted it back yesterday. Hopefully I'll soon get an appointment through to meet with an occupational therapist. I found it really interesting to keep an activity diary for 7 days, as it made me realise just how much I do each day and how I rarely just do one thing at one (I surf the Internet while eating breakfast, do a crossword while eating lunch, play on my DSi while watching the music channels...). I suspect I'll probably be advised to slow down a bit!
This week seems to have been very busy although I had hardly anything planned in my diary. I've been feeding my neighbour's cats while they've been on holiday, but the 3 cats have barely been touching the food which has been a bit of a worry. My neighbours are back tomorrow though, so hopefully the cats will just have been missing them.
On Wednesday I had an outpatient clinic at Hospital B (my first there in 10 months). It was lovely to catch up with some friends in clinic and on the ward and to see some of the nurses again too. I couldn't believe how much the ward had changed since I last saw it though, it's being completely rebuilt! And my bloods went really well as I had a very experienced Phlebotomist who clearly knew what she was doing. The rest of the day wasn't so good though. In the clinic I was told that I needed to go back onto overnight feeds for the time being because I've lost so much weight since my tummy bug (I've lost 1kg per week for the last 3 weeks!). I was expecting to be told that, but I thought it'd be 4 or 5 nights a week for now, not 7 nights a week. I feel like I've really lost my freedom now :(
I started back on overnight feeds on Wednesday night, so tonight is my 3rd night back on them. I was on them from transplant til this February, but hadn't needed them for the last 6 months. The actual feeds have been going ok, but my tummy aches have been worse during the day. I'm hoping that will just settle down with time though. I think I've mentioned before that one of the symptoms of ME that bothers me is called sleep reversal, but I prefer to call it nocturnalism (because I can feel more awake at night than I have all day). Usually this can make it a bit difficult for me to get to sleep, so I tend to go to sleep at about midnight and then I always get up at 9.30am to take my morning tablets. However going back on overnight feeds seems to have made my nocturnalism worse - I didn't get to sleep til 2.30am on Wednesday night and 1am last night. Hopefully the Melatonin that my GP will prescribe once he receives the letter from the ME clinic will help with this, but I don't know how long that will take. Hopefully it'll settle down a bit before then though so I can go back to getting to sleep at about midnight. It's tricky when I don't get to sleep til very late, because I try not to sleep in the day as I fear that that might disrupt my overnight sleep even more.
At my clinic on Wednesday I finally got a date for my annual tests (which I call my MOT), which was due last month. It will be at Hospital B in November and I'll have to stay in for 1 or 2 nights, as my scopes (to check for rejection) will require a general anaesthetic. I'm surprised it wont be at Hospital A though, as my care is being transferred to there and I'll need to have my MOTs there in the future, so why not this year? I am also going to return to Hospital B for a day next month to have an ultrasound (to see if they can find out the cause of my tummy aches) and to see the surgeons (because I've found what I think is a stitch under my skin and I want a second opinion on the hernia that my consultant at Hospital A said I have). My consultant also said that he's going to arrange for me to see a psychologist when I return to Hospital A next month, but I wasn't asked whether or not I'd like to, I was just told I would, and my consultant also didn't tell me why he wants me to see a psychologist. I don't think that's fair! I was very angry at the way I was treated during clinic and also quite disappointed because I've never had any problems with the team at Hospital B before. But on Wednesday I feel that I wasn't respected at all in clinic. I was talked over by other members of the team (when I was talking to one person another person started talking to me even though I was speaking), I was told things rather than being given options (the plan for the volume and frequency of my enteral feeds had been made before I even entered the room), I wasn't allowed to finish things I was saying (like when I was trying to explain why I felt I needed one night per week off of feeds), things weren't explained to me (like the reason for me seeing a psychologist) and some of my questions/suggestions were just immediately dismissed (I was told I couldn't have one night off feeds per week and that was that). I am going to phone a nice liver nurse next week (who was in the room at my clinic) and speak to her about it. So I'll let you know how that goes.
Today I've had a busy day helping my friend Claire to buy a new computer. We got there eventually, but I wouldn't recommend shopping at PC World to anyone. Once Claire bought her computer we had to wait for an hour and a half while they fiddled with it before we could take it away. So that was a long afternoon! This afternoon my dad also took my laptop into a local repair shop to see about getting it fixed because a key had fallen off the keyboard. He's left it with them so they can have a look at it, but I'm not sure whether they'll just be able to replace the key or whether I'll have to pay for a new keyboard. Am currently without my trusty laptop though, so am typing this on the family computer.
On Wednesday I heard my favourite singer at the moment, Little Boots, on Radio 1's Live Lounge. I thought she was fantastic doing an acoustic performance of Remedy and covering JLS's Beat Again. You can listen to those performances and an interview with her here. I'm really looking forward to X Factor starting again tomorrow as I watched it for the first time last year and became very addicted, lol. It's good entertainment. My favourite from last year was Diana Vickers, who sadly didn't make it to the final. However I've been following her progress since she was on the X Factor and she's currently rehearsing to play Little Voice in the musical The Rise and Fall of Little Voice, which will open in London in October. This morning I bought tickets to see the musical in October with my mum, which I'm really looking forward to. I have a lot coming up to look forward to - it's my 19th birthday 3 weeks tomorrow, then in October I'm seeing The Rise and Fall of Little Voice and seeing Little Boots in concert. And then in November I'm seeing Taylor Swift in concert :)
And I'm really excited about this weekend. Tomorrow I'm going to stay with my best friend Lizzy, her husband and her adorable daughter M for 2 nights. I can't wait :D I've been allowed 2 nights off my overnight feed for this, so I can have some freedom while I'm away. I'll blog about it next week, once I've got home and recovered from running around after a 3 year old all weekend! :D I've yet to start packing and want to try to get an early-ish night now, so I'd better end this very long blog now.
This week seems to have been very busy although I had hardly anything planned in my diary. I've been feeding my neighbour's cats while they've been on holiday, but the 3 cats have barely been touching the food which has been a bit of a worry. My neighbours are back tomorrow though, so hopefully the cats will just have been missing them.
On Wednesday I had an outpatient clinic at Hospital B (my first there in 10 months). It was lovely to catch up with some friends in clinic and on the ward and to see some of the nurses again too. I couldn't believe how much the ward had changed since I last saw it though, it's being completely rebuilt! And my bloods went really well as I had a very experienced Phlebotomist who clearly knew what she was doing. The rest of the day wasn't so good though. In the clinic I was told that I needed to go back onto overnight feeds for the time being because I've lost so much weight since my tummy bug (I've lost 1kg per week for the last 3 weeks!). I was expecting to be told that, but I thought it'd be 4 or 5 nights a week for now, not 7 nights a week. I feel like I've really lost my freedom now :(
I started back on overnight feeds on Wednesday night, so tonight is my 3rd night back on them. I was on them from transplant til this February, but hadn't needed them for the last 6 months. The actual feeds have been going ok, but my tummy aches have been worse during the day. I'm hoping that will just settle down with time though. I think I've mentioned before that one of the symptoms of ME that bothers me is called sleep reversal, but I prefer to call it nocturnalism (because I can feel more awake at night than I have all day). Usually this can make it a bit difficult for me to get to sleep, so I tend to go to sleep at about midnight and then I always get up at 9.30am to take my morning tablets. However going back on overnight feeds seems to have made my nocturnalism worse - I didn't get to sleep til 2.30am on Wednesday night and 1am last night. Hopefully the Melatonin that my GP will prescribe once he receives the letter from the ME clinic will help with this, but I don't know how long that will take. Hopefully it'll settle down a bit before then though so I can go back to getting to sleep at about midnight. It's tricky when I don't get to sleep til very late, because I try not to sleep in the day as I fear that that might disrupt my overnight sleep even more.
At my clinic on Wednesday I finally got a date for my annual tests (which I call my MOT), which was due last month. It will be at Hospital B in November and I'll have to stay in for 1 or 2 nights, as my scopes (to check for rejection) will require a general anaesthetic. I'm surprised it wont be at Hospital A though, as my care is being transferred to there and I'll need to have my MOTs there in the future, so why not this year? I am also going to return to Hospital B for a day next month to have an ultrasound (to see if they can find out the cause of my tummy aches) and to see the surgeons (because I've found what I think is a stitch under my skin and I want a second opinion on the hernia that my consultant at Hospital A said I have). My consultant also said that he's going to arrange for me to see a psychologist when I return to Hospital A next month, but I wasn't asked whether or not I'd like to, I was just told I would, and my consultant also didn't tell me why he wants me to see a psychologist. I don't think that's fair! I was very angry at the way I was treated during clinic and also quite disappointed because I've never had any problems with the team at Hospital B before. But on Wednesday I feel that I wasn't respected at all in clinic. I was talked over by other members of the team (when I was talking to one person another person started talking to me even though I was speaking), I was told things rather than being given options (the plan for the volume and frequency of my enteral feeds had been made before I even entered the room), I wasn't allowed to finish things I was saying (like when I was trying to explain why I felt I needed one night per week off of feeds), things weren't explained to me (like the reason for me seeing a psychologist) and some of my questions/suggestions were just immediately dismissed (I was told I couldn't have one night off feeds per week and that was that). I am going to phone a nice liver nurse next week (who was in the room at my clinic) and speak to her about it. So I'll let you know how that goes.
Today I've had a busy day helping my friend Claire to buy a new computer. We got there eventually, but I wouldn't recommend shopping at PC World to anyone. Once Claire bought her computer we had to wait for an hour and a half while they fiddled with it before we could take it away. So that was a long afternoon! This afternoon my dad also took my laptop into a local repair shop to see about getting it fixed because a key had fallen off the keyboard. He's left it with them so they can have a look at it, but I'm not sure whether they'll just be able to replace the key or whether I'll have to pay for a new keyboard. Am currently without my trusty laptop though, so am typing this on the family computer.
On Wednesday I heard my favourite singer at the moment, Little Boots, on Radio 1's Live Lounge. I thought she was fantastic doing an acoustic performance of Remedy and covering JLS's Beat Again. You can listen to those performances and an interview with her here. I'm really looking forward to X Factor starting again tomorrow as I watched it for the first time last year and became very addicted, lol. It's good entertainment. My favourite from last year was Diana Vickers, who sadly didn't make it to the final. However I've been following her progress since she was on the X Factor and she's currently rehearsing to play Little Voice in the musical The Rise and Fall of Little Voice, which will open in London in October. This morning I bought tickets to see the musical in October with my mum, which I'm really looking forward to. I have a lot coming up to look forward to - it's my 19th birthday 3 weeks tomorrow, then in October I'm seeing The Rise and Fall of Little Voice and seeing Little Boots in concert. And then in November I'm seeing Taylor Swift in concert :)
And I'm really excited about this weekend. Tomorrow I'm going to stay with my best friend Lizzy, her husband and her adorable daughter M for 2 nights. I can't wait :D I've been allowed 2 nights off my overnight feed for this, so I can have some freedom while I'm away. I'll blog about it next week, once I've got home and recovered from running around after a 3 year old all weekend! :D I've yet to start packing and want to try to get an early-ish night now, so I'd better end this very long blog now.
Friday, 14 August 2009
ME Clinic, weight and tummy aches
On Tuesday I had my first appointment at the local ME clinic. Sorry for not reporting back about it sooner.
My ME appointment went well, though it lasted 1hr 30mins and I got information overload! Was tiring but positive. I saw 2 nice doctors and an occupational therapist. I do have ME – glad to get a diagnosis at last. I fitted the 2 different diagnosis methods they use. Was interested to find that symptoms I’d assumed were just one of those things, are actually symptoms of ME, such as becoming dizzy when I stand up too quickly, getting breathless easily and feeling nocturnal. Was very glad that the doctors I saw had read through the questionnaire about my symptoms that I'd previously filled in and sent back to them, as that contained my whole complex medical history, so I didn't have to recall that all again.
A letter will be typed up and sent to my GP. The doctors suggested I try Melatonin to help me sleep, but my GP will have the final decision on that. He’s great, so I don’t think there’ll be any problems. The doctors also want me to have an MRI scan as they had a slight concern about my pituitary glad. Apparently if there are problems with that it can produce ME type symptoms and also a lack of hunger and thirst (which I have). They think it’s unlikely that there’ll be any problem, but think I should have it ruled out. Not sure about that though as I’ve struggled with claustrophobia when I’ve had MRI scans before.
The doctors thought that the trigger for my ME might have been the general anaesthetic that I had last July for a routine operation, despite me having many GAs before that. I’m not concerned about finding the trigger though.
I’m now filling out an activity diary for 1 week and then I’ll get an appointment with an occupational therapist to learn how best to manage my energy. I was surprised to discover that what I call resting (reading, watching TV…) isn’t actually resting (doing nothing). At the moment I don’t like doing nothing as I like to keep my brain busy, so I think learning to do that might be a bit of a challenge! Going to try some relaxation techniques though, so will let you know how that goes. I've been filling out my activity diary for a day and a half now and it's making me realise that I'm always on the go. And I rarely just do one thing at a time too - when I eat my breakfast I check my emails and surf the Internet, when I watch the music channels I also play on my DSi... Think I need to slow down a bit! ;)
I was very pleased that one of the doctors thought I was older than 18 :D I know I look younger, but the doctor said that I sounded much older!
I’m feeling very positive about the diagnosis as I should be able to access help and support now. I’ve joined a support group for young people with ME (called AYME) online and I’ve also found a great forum called Foggy Friends. If you're interested to find out more about ME, I found this on the Internet a few days ago and have printed out copies to give to my friends. It explains ME simply, but accurately.
On Tuesday I weighed myself and wasn't surprised to find that I'd lost some weight because I've had this tummy bug. My dietician is quite concerned though and thinks I might need to seriously consider going back onto enteral feeds again :( I'm getting over my tummy bug slowly, but now I'm eating more I'm suffering from bad tummy aches again. I think some foods I eat are triggering the pain, but I can't work out what. It's making it really difficult for me to eat at the moment because I'm worried that I'll be in pain afterwards. Yesterday I received a phone call from Hospital B (who I've not seen since last October), asking if I could attend an outpatient clinic next Wednesday. I'm free then, so can attend at such short notice. Will let the team know about my new diagnosis and also hope to speak to my dietician about my weight and stomach aches. Apparently Irritable Bowel Syndrome can be a symptom of ME, so that might explain my tummy aches.
My cough and cold are still lingering too, so I'm not feeling great at the moment. Also feeling quite tired because I've had a busy week and haven't been sleeping very well. One of the symptoms of ME I suffer from is called sleep reversal. After feeling tired all day sometimes I then become full of energy from around 11pm. This can make getting to sleep quite tricky. This is worse some nights than others and last night was a bad one. Hopefully the Melatonin will help with this though. I was on Melatonin briefly post transplant and it normalised my sleep pattern then, so hopefully it will do again.
My ME appointment went well, though it lasted 1hr 30mins and I got information overload! Was tiring but positive. I saw 2 nice doctors and an occupational therapist. I do have ME – glad to get a diagnosis at last. I fitted the 2 different diagnosis methods they use. Was interested to find that symptoms I’d assumed were just one of those things, are actually symptoms of ME, such as becoming dizzy when I stand up too quickly, getting breathless easily and feeling nocturnal. Was very glad that the doctors I saw had read through the questionnaire about my symptoms that I'd previously filled in and sent back to them, as that contained my whole complex medical history, so I didn't have to recall that all again.
A letter will be typed up and sent to my GP. The doctors suggested I try Melatonin to help me sleep, but my GP will have the final decision on that. He’s great, so I don’t think there’ll be any problems. The doctors also want me to have an MRI scan as they had a slight concern about my pituitary glad. Apparently if there are problems with that it can produce ME type symptoms and also a lack of hunger and thirst (which I have). They think it’s unlikely that there’ll be any problem, but think I should have it ruled out. Not sure about that though as I’ve struggled with claustrophobia when I’ve had MRI scans before.
The doctors thought that the trigger for my ME might have been the general anaesthetic that I had last July for a routine operation, despite me having many GAs before that. I’m not concerned about finding the trigger though.
I’m now filling out an activity diary for 1 week and then I’ll get an appointment with an occupational therapist to learn how best to manage my energy. I was surprised to discover that what I call resting (reading, watching TV…) isn’t actually resting (doing nothing). At the moment I don’t like doing nothing as I like to keep my brain busy, so I think learning to do that might be a bit of a challenge! Going to try some relaxation techniques though, so will let you know how that goes. I've been filling out my activity diary for a day and a half now and it's making me realise that I'm always on the go. And I rarely just do one thing at a time too - when I eat my breakfast I check my emails and surf the Internet, when I watch the music channels I also play on my DSi... Think I need to slow down a bit! ;)
I was very pleased that one of the doctors thought I was older than 18 :D I know I look younger, but the doctor said that I sounded much older!
I’m feeling very positive about the diagnosis as I should be able to access help and support now. I’ve joined a support group for young people with ME (called AYME) online and I’ve also found a great forum called Foggy Friends. If you're interested to find out more about ME, I found this on the Internet a few days ago and have printed out copies to give to my friends. It explains ME simply, but accurately.
On Tuesday I weighed myself and wasn't surprised to find that I'd lost some weight because I've had this tummy bug. My dietician is quite concerned though and thinks I might need to seriously consider going back onto enteral feeds again :( I'm getting over my tummy bug slowly, but now I'm eating more I'm suffering from bad tummy aches again. I think some foods I eat are triggering the pain, but I can't work out what. It's making it really difficult for me to eat at the moment because I'm worried that I'll be in pain afterwards. Yesterday I received a phone call from Hospital B (who I've not seen since last October), asking if I could attend an outpatient clinic next Wednesday. I'm free then, so can attend at such short notice. Will let the team know about my new diagnosis and also hope to speak to my dietician about my weight and stomach aches. Apparently Irritable Bowel Syndrome can be a symptom of ME, so that might explain my tummy aches.
My cough and cold are still lingering too, so I'm not feeling great at the moment. Also feeling quite tired because I've had a busy week and haven't been sleeping very well. One of the symptoms of ME I suffer from is called sleep reversal. After feeling tired all day sometimes I then become full of energy from around 11pm. This can make getting to sleep quite tricky. This is worse some nights than others and last night was a bad one. Hopefully the Melatonin will help with this though. I was on Melatonin briefly post transplant and it normalised my sleep pattern then, so hopefully it will do again.
Monday, 10 August 2009
Ill :(
Sorry it's been a while since my last blog update, but I've not been very well this week. I've got a tummy bug, a cough (which has gone to my chest) and a cold. Yuk :( The tummy bug came last Monday and although I'm slowly getting better, I'm not there yet. And the cough and cold show no signs of going yet.
I spent last Wednesday and part of Thursday in Hospital A. When I developed the symptoms of the tummy bug on Monday night I was immediately quite worried because the symptoms are very similar to those in rejection of the small bowel. So I contacted Hospital B on Tuesday and a registrar said that because I hadn't got a temperature it was unlikely to be rejection, but I should get checked out at a local hospital anyway. I decided to go to Hospital A (the adult hospital I'm currently transitioning to) rather than Hospital H (my local hospital) because Hospital A isn't much further away. So I rang Hospital A, which was big palaver as I found it really difficult to get hold of the right contact, and arranged to go in for lots of tests on Wednesday. On Wednesday I couldn't see my consultant (Dr W) as he wasn't in that day, but saw his fellow consultant (Dr M) instead. He was great though. I was put on a drip because I was dehydrated and had lots of blood tests, x-rays... done. I went home that evening after being rehydrated, but returned the following morning for more blood tests. Luckily all the tests came back clear, indicating that the cause was probably viral, so I'd just feel better in time. I also discovered on the Transplant Kids message boards I use that some other children from Hospital B's team at the British Transplant Games had been ill at the start of last week, so it looks like there might have been something going round there.
It was great to have the opportunity to give Hospital A a test run and to get to know how it worked a bit better. All the staff on the Gastro Ward there (where I was treated this time) were really friendly and I think now I'd feel more confident if I needed to spend time there again. The woman in the bed next to me had also had a multi-organ transplant, so I spent some time chatting to her, which was nice. I had 3 sets of bloods taken over the 2 days and was very proud of myself because I had all of them without cold spray, which I usually use to numb the skin beforehand. The spray means that having blood taken hurts less, but it also makes the veins constrict, so makes the nurse's job harder. And I also escaped to the shops on the Concourse briefly where I bought myself a couple of magazines and a nice t-shirt :)
I've not had to return to the Hospital since last Thursday, but have been keeping the team there updated on my progress with phone calls. My tummy quickly settled during the days, but still is causing me some trouble at night, which keeps me awake. This was a bit better last night though, so fingers crossed I'm now on the mend. I'm not very good at drinking, as I never feel thirsty, but have been making a big effort with it while I've been ill, so have managed to prevent myself getting dehydrated at home. I've not been eating properly for a week though, so am quite nervous about weighing myself tomorrow as I know I'll have lost a significant amount of weight. Hopefully I'll be able to build my eating back up relatively quickly though once I'm completely better and get my weight back up a bit.
I've not done much at all this week as I've felt awful and had very little energy. I've spent quite a lot of time relaxing and watching DVDs though, which has been nice :) I discovered a great Sandra Bullock film called '28 Days' which I would highly recommend, quite enjoyed 'The Holiday' though thought it was bit long, loved re-watching 'Bridget Jones' Diary', got very confused by 'Crash' and had a good laugh with my mum at 'Intolerable Cruelty'. I went shopping briefly on Thursday as Hospital A is on the outskirts of the city and bought a friend's birthday present, a t-shirt and a much needed new pair of slippers. And because I was feeling a bit better today I went into town where I bought some very cute ladybird earrings and a travel Cribbage board. I used to be able to play Cribbage, but hadn't played for a long time, so last week my dad re-taught me and we've enjoyed playing games together in the evenings. Our Cribbage Board is quite big though, so I thought it would be very handy to buy a travel board for taking into hospital with me in the future. After my trip into town earlier this afternoon I've been feeling exhausted, so I'm looking forward to hopefully getting some help and advice tomorrow at my ME appointment. Will let you know how it goes.
I spent last Wednesday and part of Thursday in Hospital A. When I developed the symptoms of the tummy bug on Monday night I was immediately quite worried because the symptoms are very similar to those in rejection of the small bowel. So I contacted Hospital B on Tuesday and a registrar said that because I hadn't got a temperature it was unlikely to be rejection, but I should get checked out at a local hospital anyway. I decided to go to Hospital A (the adult hospital I'm currently transitioning to) rather than Hospital H (my local hospital) because Hospital A isn't much further away. So I rang Hospital A, which was big palaver as I found it really difficult to get hold of the right contact, and arranged to go in for lots of tests on Wednesday. On Wednesday I couldn't see my consultant (Dr W) as he wasn't in that day, but saw his fellow consultant (Dr M) instead. He was great though. I was put on a drip because I was dehydrated and had lots of blood tests, x-rays... done. I went home that evening after being rehydrated, but returned the following morning for more blood tests. Luckily all the tests came back clear, indicating that the cause was probably viral, so I'd just feel better in time. I also discovered on the Transplant Kids message boards I use that some other children from Hospital B's team at the British Transplant Games had been ill at the start of last week, so it looks like there might have been something going round there.
It was great to have the opportunity to give Hospital A a test run and to get to know how it worked a bit better. All the staff on the Gastro Ward there (where I was treated this time) were really friendly and I think now I'd feel more confident if I needed to spend time there again. The woman in the bed next to me had also had a multi-organ transplant, so I spent some time chatting to her, which was nice. I had 3 sets of bloods taken over the 2 days and was very proud of myself because I had all of them without cold spray, which I usually use to numb the skin beforehand. The spray means that having blood taken hurts less, but it also makes the veins constrict, so makes the nurse's job harder. And I also escaped to the shops on the Concourse briefly where I bought myself a couple of magazines and a nice t-shirt :)
I've not had to return to the Hospital since last Thursday, but have been keeping the team there updated on my progress with phone calls. My tummy quickly settled during the days, but still is causing me some trouble at night, which keeps me awake. This was a bit better last night though, so fingers crossed I'm now on the mend. I'm not very good at drinking, as I never feel thirsty, but have been making a big effort with it while I've been ill, so have managed to prevent myself getting dehydrated at home. I've not been eating properly for a week though, so am quite nervous about weighing myself tomorrow as I know I'll have lost a significant amount of weight. Hopefully I'll be able to build my eating back up relatively quickly though once I'm completely better and get my weight back up a bit.
I've not done much at all this week as I've felt awful and had very little energy. I've spent quite a lot of time relaxing and watching DVDs though, which has been nice :) I discovered a great Sandra Bullock film called '28 Days' which I would highly recommend, quite enjoyed 'The Holiday' though thought it was bit long, loved re-watching 'Bridget Jones' Diary', got very confused by 'Crash' and had a good laugh with my mum at 'Intolerable Cruelty'. I went shopping briefly on Thursday as Hospital A is on the outskirts of the city and bought a friend's birthday present, a t-shirt and a much needed new pair of slippers. And because I was feeling a bit better today I went into town where I bought some very cute ladybird earrings and a travel Cribbage board. I used to be able to play Cribbage, but hadn't played for a long time, so last week my dad re-taught me and we've enjoyed playing games together in the evenings. Our Cribbage Board is quite big though, so I thought it would be very handy to buy a travel board for taking into hospital with me in the future. After my trip into town earlier this afternoon I've been feeling exhausted, so I'm looking forward to hopefully getting some help and advice tomorrow at my ME appointment. Will let you know how it goes.
Sunday, 2 August 2009
BTG and my health
My plan of avoiding rice to help my tummy aches hasn't worked. After stopping eating rice I had no tummy aches for 5 days, but then they came back again, just as bad as before. Very frustrating. But I've had a chat to my parents and we've thought of another plan that might help my tummy aches, so we're giving that a try and if it doesn't work I'm going to contact my consultant from Hospital A to ask his advice. Because a transplanted bowel doesn't have the nerve connections a normal bowel has, peristalsis (the contractions of the muscles of the digestive system to push food along) either doesn't occur at all or occurs less than normal (can't quite remember). So food moves through my digestive system much faster than it should, but I take some tablets called Loperamide to slow it down. I used to take lots of these, but had got it down to a very small dose. Now I've tried increasing my dose slightly to see if this slows my digestive system down and eases my stomach aches. Fingers crossed it helps.
Last Monday I had a lovely day when an old friend came round. I was at secondary school with K, but hadn't seen her properly for around 3 years. We lost touch for a while, but got communicating again through Facebook quite recently and so I invited her round. It was great to catch up with K and hear about what she's been up to since I last saw her. There is only one other friend I've kept in touch with from secondary school - F. I've seen F a couple of times over the last few years, most recently around Christmas time last year. She's coming round a week on Thursday and I can't wait to see her :)
On Thursday me and mum set off to the British Transplant Games as planned. We settled into our accommodation in the afternoon (at the University of Warwick) and found our tea before setting off on the bus to the Opening Ceremony in the centre of Coventry. The Opening Ceremony was good, if a little disorganised! It was great to meet up with some friends from the Transplant community (especially Cat who runs Transplant Kids and Sarah, mum to Wills), meet some new people and see my physios and dietician outside of Hospital B. I felt quite tired after that, so headed back to the accommodation rather than attending a transition meeting like I'd originally planned. The next day (Friday) I woke up exhausted, so withdrew from my 10 pin bowling event and spent the day resting. However that evening me and mum discovered Warick Arts Centre on the university campus and found out that they had a little cinema there. So we saw a fantastic film called 'The Class'. On Saturday I was exhausted again, so me and mum packed up and came home. I was disappointed that I couldn't participate in my event or stay til the end of the games and I'm very frustrated with my exhaustion getting in the way of everything. However my appointment with the M.E. clinic is fast approaching (August 11th), so hopefully I'll be able to get some help there. Have just heard from Cat at the games - Hospital B won the best liver team and the best children's team (for the 14th year in a row), so congratulations to everyone who was involved :D
When we got home yesterday I just spent the rest of the day relaxing. While I was away I recorded Mika at the iTunes festival and another gig featuring Little Boots and the Pet Shop Boys, so I enjoyed watching those yesterday. I also watched the final episode of Psychoville, which was good but left lots of unanswered questions, suggesting there will be a second series. And I saw Mika's new video (for We Are Golden) on the Internet. If you're interested in watching it then click here, click on 'Enter' and then when the intro video has finished click on the bit about a Mika exclusive at the top. Let me know what you think.
This morning I felt ok, so went out to browse round our local carboot sale with my parents. I bought 7 DVDs for just £8 - bargain! Then we picked my Nan up and brought her back to our house for the afternoon. It was lovely to see her, but I felt exhausted again :( So I spent some of the afternoon just relaxing in my room and some with the rest of my family. I showed my Nan my photos from last Saturday and we all watched a film called 'Little Miss Sunshine' together. I'd highly recommend it if you've not seen it, as it's a fantastic film!
Before my transplant, when I used to be on TPN, I was under Hospital G. I used to stay in there quite often, so made a couple of close friends over the years - C and I. However since my transplant I've almost lost touch with them apart from the occassional email to I. A few weeks ago my mum received a phone call from C's mum, who was quite worried because it looked like C might need a small bowel transplant. She knew we'd been through it, so had lots of questions for mum. C isn't dangerously ill as I was before my transplant, but her quality of life at the moment on TPN is poor and a transplant could give her a better quality of life. I emailed C saying she could speak to me anytime, but she's not been in touch since, so I don't know if she will be or not. Hopefully her mum will keep my mum updated though. Then when I arrived back home from the British Transplant Games yesterday, I found an email on Facebook from I. She asked if she could have her home phone number because a transplant had been mentioned to her and her mum wanted to speak to my parents. So last night I's mum spoke to my dad on the phone. Like C, I has been given the option of whether she'd like a transplant or not as it could improve her quality of life. I is going to phone me soon to chat to me about my experience. With me it was a matter of life or death, I had no choice in accepting a transplant as I knew without it I would die. It must be so much harder for C and I, being given the choice. For C and I, horses are their life, but post transplant pets are a big risk to your health, so that will just make the decision harder for them both. All I can do is tell them about my experience and help them to decide whether a transplant would be the best option for them or not.
One of the children I've met at hospital B is an inspirational little girl, K. She had a small bowel and liver transplant at 11 months old and is now 5. She's had a rough time since Christmas and has been in and out of hospital. However she has a fantastic sense of humour and is almost always cheerful and smiling. Last week I heard from her mum that K is going to need a second transplant. After I heard this news I contacted Live Life Then Give Life about their Robyn's Rainbows project. This project sends out balloons to members of the transplant community who are having a tough time. So I emailed them and asked them to send a balloon to K to cheer her up :) I know K is a fighter and she's been a real inspiration to me, so I hope she soon gets her transplant so she can begin to live her life again.
Last Monday I had a lovely day when an old friend came round. I was at secondary school with K, but hadn't seen her properly for around 3 years. We lost touch for a while, but got communicating again through Facebook quite recently and so I invited her round. It was great to catch up with K and hear about what she's been up to since I last saw her. There is only one other friend I've kept in touch with from secondary school - F. I've seen F a couple of times over the last few years, most recently around Christmas time last year. She's coming round a week on Thursday and I can't wait to see her :)
On Thursday me and mum set off to the British Transplant Games as planned. We settled into our accommodation in the afternoon (at the University of Warwick) and found our tea before setting off on the bus to the Opening Ceremony in the centre of Coventry. The Opening Ceremony was good, if a little disorganised! It was great to meet up with some friends from the Transplant community (especially Cat who runs Transplant Kids and Sarah, mum to Wills), meet some new people and see my physios and dietician outside of Hospital B. I felt quite tired after that, so headed back to the accommodation rather than attending a transition meeting like I'd originally planned. The next day (Friday) I woke up exhausted, so withdrew from my 10 pin bowling event and spent the day resting. However that evening me and mum discovered Warick Arts Centre on the university campus and found out that they had a little cinema there. So we saw a fantastic film called 'The Class'. On Saturday I was exhausted again, so me and mum packed up and came home. I was disappointed that I couldn't participate in my event or stay til the end of the games and I'm very frustrated with my exhaustion getting in the way of everything. However my appointment with the M.E. clinic is fast approaching (August 11th), so hopefully I'll be able to get some help there. Have just heard from Cat at the games - Hospital B won the best liver team and the best children's team (for the 14th year in a row), so congratulations to everyone who was involved :D
When we got home yesterday I just spent the rest of the day relaxing. While I was away I recorded Mika at the iTunes festival and another gig featuring Little Boots and the Pet Shop Boys, so I enjoyed watching those yesterday. I also watched the final episode of Psychoville, which was good but left lots of unanswered questions, suggesting there will be a second series. And I saw Mika's new video (for We Are Golden) on the Internet. If you're interested in watching it then click here, click on 'Enter' and then when the intro video has finished click on the bit about a Mika exclusive at the top. Let me know what you think.
This morning I felt ok, so went out to browse round our local carboot sale with my parents. I bought 7 DVDs for just £8 - bargain! Then we picked my Nan up and brought her back to our house for the afternoon. It was lovely to see her, but I felt exhausted again :( So I spent some of the afternoon just relaxing in my room and some with the rest of my family. I showed my Nan my photos from last Saturday and we all watched a film called 'Little Miss Sunshine' together. I'd highly recommend it if you've not seen it, as it's a fantastic film!
Before my transplant, when I used to be on TPN, I was under Hospital G. I used to stay in there quite often, so made a couple of close friends over the years - C and I. However since my transplant I've almost lost touch with them apart from the occassional email to I. A few weeks ago my mum received a phone call from C's mum, who was quite worried because it looked like C might need a small bowel transplant. She knew we'd been through it, so had lots of questions for mum. C isn't dangerously ill as I was before my transplant, but her quality of life at the moment on TPN is poor and a transplant could give her a better quality of life. I emailed C saying she could speak to me anytime, but she's not been in touch since, so I don't know if she will be or not. Hopefully her mum will keep my mum updated though. Then when I arrived back home from the British Transplant Games yesterday, I found an email on Facebook from I. She asked if she could have her home phone number because a transplant had been mentioned to her and her mum wanted to speak to my parents. So last night I's mum spoke to my dad on the phone. Like C, I has been given the option of whether she'd like a transplant or not as it could improve her quality of life. I is going to phone me soon to chat to me about my experience. With me it was a matter of life or death, I had no choice in accepting a transplant as I knew without it I would die. It must be so much harder for C and I, being given the choice. For C and I, horses are their life, but post transplant pets are a big risk to your health, so that will just make the decision harder for them both. All I can do is tell them about my experience and help them to decide whether a transplant would be the best option for them or not.
One of the children I've met at hospital B is an inspirational little girl, K. She had a small bowel and liver transplant at 11 months old and is now 5. She's had a rough time since Christmas and has been in and out of hospital. However she has a fantastic sense of humour and is almost always cheerful and smiling. Last week I heard from her mum that K is going to need a second transplant. After I heard this news I contacted Live Life Then Give Life about their Robyn's Rainbows project. This project sends out balloons to members of the transplant community who are having a tough time. So I emailed them and asked them to send a balloon to K to cheer her up :) I know K is a fighter and she's been a real inspiration to me, so I hope she soon gets her transplant so she can begin to live her life again.
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