My health, teeth extractions and family

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!