Last weekend I decided against helping out at the transplant camp in the USA this year as I'm still struggling with tiredness and I think being responsible for 8 to 10 children could be tricky if I'm not feeling great myself. However I have been invited to attend next year, so I'm hoping to go then instead :)
On Saturday morning I received a letter in the post from my local ME unit offering me an appointment in August. It's still a while away, but I'm just really glad I've got a date at last. My main concern isn't getting a diagnosis, but getting some support and hopefully learning some coping strategies.
I've not been feeling too well since my last update - have been exhausted and have had a headache on and off since Saturday :( I've also had a slight temperature (nothing high enough to worry about though) and a bit of a sore throat. I didn't manage to attend my friend's 18th birthday party on Saturday night as I just didn't feel up to. I'm also really struggling with the heat and am not looking forward to temperatures rising even more this week.
I managed to get out of the house a bit yesterday though and browsed round 2 carboot sales where I got some bargains (bought 4 DVDs, 1 gamecube game, 1 book and a lamp to go next to my sofa), visited my nan and went to the cinema.
I arrived at my local cineworld with my friend Claire a bit early for the film, so I could try to speak to someone about the possibility of them displaying organ donation leaflets in their foyer to coincide with showing 'My Sister's Keeper', as they'd not replied to my letter. I asked to speak to the manager, but he was busy so I spoke to the supervisor instead and showed him the letter I'd sent. The supervisor said that someone else sorted out those kind of things, but wasn't in yesterday. However, I've got the name of the person I need to see and know that they're in today from 9am til 5pm, so will go to see them this afternoon. I got so frustrated when I was trying to speak to the supervisor because he insisted on speaking to Claire rather than me! Claire didn't speak to him though and I answered all his questions, but he still insisted on responding to Claire rather than me, grrr. I find it really annoying looking young - I always have and now my braces really don't help. I often find when at the dentist or with doctors who don't know me well that they'll speak to my parents rather than me. When I return to the cinema this afternoon I'll make sure my mum isn't with me and then whoever I speak to will have to speak to me ;)
The film I saw yesterday afternoon was 'My Sister's Keeper'. I think it did the book justice, but did find myself constantly comparing it to the book. Most of the changes they made from the novel made sense to me (such as not including some minor characters and sub plots to fit a long novel into a film length), but there were a couple of odd changes I couldn't understand the reasoning for (such as changing the age of the main character, Anna). But there were some good scenes added to the film that hadn't been in the book (such as one at the beach). I'm not sure about the ending, I didn't like it as much as the ending of the novel. However all the main actors were fantastic, especially the girls who played the 2 sisters. I liked the film more than I thought I would and if you've not read the book or not read it for a long time, you'd probably be very happy with the film. I don't really want to say any more, as I'm worried I might spoil it if you are planning to see it, but a warning - take some tissues with you, I found it more emotional to see it all on screen than read it in a book.
And I enjoyed spotting medical mistakes and inconsistencies in the film, hehe. I don't know why Kate was on oxygen, but I did notice that the tubing was never connected to an oxygen cylinder! Dialysis was mentioned a lot, but there was never any evidence of it. And although Kate had a central line which was seen, there was never anything connected to it or any cannulas or IVs.
I watched a really good film the other day called 'Prime', which I'd recorded from the TV. I'd highly recommend it as it first it looks like it's going to be very predictable, but there is soon a big twist and it's very funny too. And the ending surprised me. When I return to the cinema this afternoon, me and mum are going to see a film while we're there. I really wanted to see 'Sunshine Cleaning', but was disappointed to find that it's not coming to any of my local cinemas because it's an independent film :( So we're going to see 'The Hangover' instead.
My dad and Alf (my younger brother) are still away at Glastonbury, but they've been in touch and sound like they've been having a fantastic time. They're due back this evening.
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I hope you start feeling better and cope ok with the heat. Let me know how the cinema goes.
ReplyDeleteEmma x x
Thanks for the info! I might go and see. I cryed at the books so I will have to take a bag full of tissues for the film!
ReplyDeleteI don't like the heat either. I feel a bit stupid sitting online on a such a beautiful day but I don't like ti being quite so warm.
Have you thought about keeping a diary of your energy levels? Writing down specific times when you notice you feel particularly tired etc. You may start to notice a pattern in relation to the other things you are doing/have planned. I used to feel extra ill if I was bored/mildy to very anxious about seeing someone or doing something, worried about something in the future, or dissappointed. You might be able to make connections too. Jx
I'm sorry you're feeling so tired - the heat can't help. Hopefully once uou've had this meeting and hopefully a diagnosis, they will be able to offer you more support!
ReplyDeleteI'm half-way through my Sister's Keeper at the minute - my school work is a nightmare atm, and so I haven't managed to finish yet - and I'm hopefully gonna see it as soon as it gets to my local cinema (they are a bit rubbish!)
Hope you feel better soon,
Becks xxx