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.