A tiring day at hospital, Save Jess-tival and Mika tickets! :D

On Monday afternoon I watched a fantastic DVD called The Secret Life of Bees. It was set in the South states of the USA in the 1960s and was about segregation and the power of women. Some of it was quite sad, but I'd highly recommend it as it was very well made and the acting was great. It was based on a book of the same name that I'm now going to try to read.

Yesterday I had a long and tiring day at Hospital B. I was out the house from 9am til 8pm! The train journeys weren't too bad, just long. But I passed the time ok with my iPod.

I arrived at the hospital just in time for my clinic and had a quick chat with my friend A who has a transplant like mine and is my age. When I got into clinic I was told that I didn't need bloods doing :D I was given the date for my admission next month, so I'll be going in on the 15th November for a couple of days for my yearly tests. My dietician, S, and consultant were happy that my weight has increased since last clinic, so we're going to keep my overnight feeds at 6 nights per week for now (had 6 nights last week for the first time and my weight stayed exactly the same). My tummy aches were a concern that I wanted to talk about becauase after not getting any for a month (end of Aug to end of Sept), they came back last week and I've started to have them every day again since then. They're not aches as such, more like cramps and they hurt. I can't find any way to ease them. And they seem to come after I eat and are more severe the more I eat, so it's preventing me building my eating up. My dietician had a good suggestion for that, so I'm going try to eat little and often rather than a couple of larger meals. Hopefully that'll help. My favourite liver nurse, L, is going on maternity leave at the end of this week and will probably be off for a whole year :( She's the one I phone with any problems or questions and she sorts everything out, so I don't know what'll happen when she leaves. Hopefully I'll be able to find another helpful liver nurse to contact. And my consultant confirmed that he'll be running another joint clinic with my consultant from Hospital A next year (but didn't say when), but said he wont be letting me go next year, which is fine with me as I don't feel ready to complete transition yet. The whole team in the clinic were concerned at the lack of follow up I'm receiving from the ME clinic (they can't offer me any more because of a lack of funding), but the physio said she'd look into getting me some physio locally as that might help with my ME. And my consultant said it would be fine for me to double my Melatonin dose like the occupational therapist from the ME clinic recommended as my current dose isn't helping my sleep.

I knew I had a psychologist appointment scheduled for somepoint yesterday, but didn't find out the time til clinic. My 12pm clinic started at 12.15pm, so I had to dash after that to get to the psychology department for my appointment at 1pm. During my dash I bumped into C, the social worker, and because I receive ESA she thinks I should be entitled to free prescriptions and should be able to claim back money for travelling to hospital appointments. So she's going to email me with some info.

I've seen the psychologist, J, before and she's lovely. I wasn't feeling great by this time yesterday, I was just exhausted. And I was wearing loads of layers of clothing to keep me warm, forgetting how hot hospitals are! Whoops! And Alf had given me his cold :( But J was great and would like me to go back to see her as she thinks she can help my ME :D I'm going to email her the contact details of my doctor from the ME clinic so she can contact him and then we'll keep in touch via email til I see her next. At the ME clinic it was suggested that the GA I had in July 08 might have triggered my ME, but J thought that rather than one trigger it was more likely that a bundle of things had contributed, which made much more sense to me. She has more ideas and suggestions about my ME that she'd like to talk about and also wants to teach me self hypnosis (!) to help me relax because I really struggle to relax and rest.

After my appointment with J I had about 10mins to get to my final appointment of the day, an ultrasound scan. My consultant had requested this to have a look for the cause of my tummy aches. For some reason I wasn't allowed to have this scan on my own, they insisted that mum came in with me! I am 19, lol. I confused the first ultrasound scanning person (I don't know what their proper job title is) because he'd just been told that I'd had a small bowel and liver transplant, whereas I also had a pancreas too. So when he was scanning me he couldn't work out why the area around my pancreas was blurry, but it was in fact 2 pancreases (my old one wasn't removed when I had my transplant). Then he was called away and a lovely lady took over. She spent ages scanning my liver and that all looked good :) And then she looked for the cause of my tummy aches but was puzzled as to why my consultant had requested an ultrasound to look for the cause of my tummy aches because they can never see anything in the bowel because of gas. So that was a bit pointless. But hopefully the tests I have when I'm admitted next month will be more useful.

After the ultrasound scan I popped up to the ward. No-one I knew was in, but I chatted to a few nurses I knew. It was also a chance to look round the new ward because it has had loads of building work done on it and looks completely different and very confusing! It will be interesting to stay on the new look ward next month and see what I think.

We finished at the hospital with a couple of hours to spare before our train departed, so went shopping, which isn't a good idea when trying not to spend money! I bought 3 long sleeved t-shirts to keep me warm over winter because 90% of the items in my wardrobe have short sleeves, this week's Radio Times magazine, a shopping bag that folds up really small (plus one for a friend) because my last one fell apart from overuse and 2 lovely children's books about Japan (one for me and one for my friend Catherine's birthday next month - she went to Japan with me) which contain lovely illustrations and loads of info and were reduced to just £1 each (RRP was £10)!

Yesterday evening I heard from K's mum and she seems much more positive. The doctors are happy with K and hope to get her off the oscillator and on to a ventilator today :)

Yesterday I also heard from an old friend from secondary school, F, who I met up with this summer for the first time in ages. She suggested getting together one day towards the end of the month to have a film marathon :D I'm really looking forward to that :D

When I returned from the hospital yesterday I discovered that tickets for Save Jess-tival had gone on sale. This event has been organised by my friends involved the Save Jess campaign to raise awareness of organ donation and to raise money for Live Life Then Give Life. You can find out more info and find out how to buy tickets on the campaign website (click on 'Save Jess campaign' above), but Save Jess-tival is taking place on Friday 16th October from 7.30pm in London. It will be an evening of live music (featuring Natalie Imbruglia and the Yeah Yous), comedy (featuring Glenn Wool and Ed Byrne) and more!

As soon as I heard about it I knew I wanted to go as lots of my friends are involved and it sounds like a fantastic experience, but was very aware that the next day I'm planning to see a matinee performance of The Rise and Fall of Little Voice in London. And with having ME doing both wouldn't be sensible, but I'm going to attempt it anyway as I don't want to miss either event :D I've bought my friend Claire a ticket to attend Save Jess-tival with me, but I'm not sure if she can make it yet. If not, I'll try to persuade my mum to accompany me but if all else fails I'd be happy to go on my own because I'll know people there. And this morning I bought myself a couple of cheap Natalie Imbruglia albums from Amazon Marketplace, because I only have 1 and want to familiarise myself with more of her music before I see her live.

Mika's UK tour dates were eventually announced yesterday (they'd been promised on Mon, but were never put up on his website). I was very surprised at the size of his UK tour as it only consists of 11 dates. I'd hoped to go twice, but the only 2 concerts near enough to me are just 3 days apart, so I'm just going to go once (but with my mum and my friend H). I phoned H last night to check the London date with her and she's free, so she was happy for me to go ahead and book us tickets when the presale opened this morning at 9am. Only standing tickets were available in the presale, so I bought 3 of those so we are guaranteed to see Mika. However I'm not sure if I'd be able to manage standing, so am going to see if I can get some good seats when the tickets go on general sale on Friday morning and if I can then I'll sell the standing tickets. If not then we'll just cope with standing as best we can. But I'm definitely going to see Mika next February :D And the London date (28th Feb) will be exactly 2 years to the day since I first saw him live!

With my shopping on Tuesday and purchasing of the Save Jess-tival and Mika tickets I've now spent £250 in a week! Oops! Hopefully I'll be paid back for some of the tickets though.

I'm feeling tired today after yesterday, but am not too bad. And my cold seems much better today :D This morning my new earphones arrived in the post, so I'm looking forward to trying them out later. I already know that they have good sound quality and are comfortable though because my mum has a similar pair, just in a different colour. And I've just had a visit from a nurse who works for the company that supply all the things I need for my overnight feeds. She came to check that my pump wasn't out of date, but mum invited her in for a cup of tea and we had a nice chat :)