Update and Ask Me Anything

I still can't get my Melatonin dose right. 5mg doesn't help my sleep but 7.5mg is too much. I think I need a dose somewhere inbetween, but can't do that with my current 5mg tablets. So at the moment I'm taking 5mg each night and still being nocturnal. Grr.

And I'm still struggling with tape to secure my NG tube in place. I've found a tape that doesn't mark my face, but it tends to fall off during the night which isn't ideal, lol. That's now 4 tapes I've tried recently and none of them are right.

Yesterday I heard from Hospital B and my annual review which was arranged for November has now been postponed til December because someone who is needed for one of the tests isn't in again til December! So I'll be in from the 13th til the 15th December. And instead of staying on the ward they're putting us up in the hotel :) At first I wasn't very happy with the idea of being in so close to Christmas, but now I'm looking forward to escaping and going to see the Christmas lights in the city :D I was in over Christmas in 2006 after my transplant, but wasn't well enough to get out and see the lights then. I was considering doing this hospital stay on my own because although my parents have always stayed with me in the past, when I stay in Hospital A in the future I'll have to stay on my own. But because I'll be in the hotel, not on the ward, my mum is going to stay with me. I'll be admitted on the Sunday and have bloods on the ward. Then on the Monday I'll have a general anaesthetic for my annual scopes. And on Tuesday I'm going to have a kidney test (because Tacrolimus, the immunosuppressant I take, can damage your kidneys) before heading home. Hopefully I'll also see the psychologist, J, somewhere in there too.

The diasadvantage of this delay with my stay at Hospital B is that it'll now be longer before I might get an explanation and hopefully a solution to my tummy aches as my consultant is relying on my scopes to find the cause. I had bad tummy ache on Wednesday and awful tummy ache yesterday. Yesterday I just felt awful :( As well as really bad tummy ache, I was freezing cold (and occassionally boiling hot), had a small temperature (bit not enough to worry about), a headache, no energy and was completely exhausted. Paracetamol didn't help my headache and sleeping in the day (something I really try not to do usually) didn't help either. So I cancelled my dentist appointment for yesterday afternoon as I didn't feel well enough to go out and luckily felt a bit better in the evening.

My Mum's car has just been fixed for around £300, which is much better than the £500-£600 we had expected it would cost :) As I'm writing this she is on her way to pick it from the garage with a lift from a lovely neighbour. So it'll be great to have the 2nd car working again :D

My parents have decided that they are going to go away next week from Tuesday to Friday, so I'm both excited and nervous about that. I can't cook, so might need to have some basic lessons this weekend so I don't starve while they're away. And I think I'm also going to need to learn how to work the washing machine, lol. I contacted Sophie a couple of days ago and she's happy to give me a lift to the orthodontist next Thursday so I can keep that appointment to have my braces tightened. My orthodontist also plans to replace my current wires with thicker wires and apparently he can fit stoppers onto the ends of the new wires, so that should prevent my annoying wire coming loose every time I eat.

I had my hair trimmed yesterday morning by my favourite hairdresser :) She had to take more off my hair than I'd expected because the ends were so split (can't remember the last time I had my hair trimmed!), but I'm very happy with the result as my hair looks much less straggly now. My hair trim took 25mins and cost £17.50, quite expensive I thought! Not too bad to pay occassionally though.

My Dad works with providing housing for the homeless. He's the manager of a team which manage a couple hostels in our local city. He finds his work quite tough sometimes, but it can be very rewarding. Just less than a fortnight ago Dad was called out to work urgently because there had been a death on the property. When this happens it can be quite traumatising for some of the staff involved and creates a lot of work for the whole team, but especially Dad. But luckily deaths in the hostels only happen rarely. Yesterday there was another one - the second death on the property in less than a fornight. So Dad had a hectic day at work yesterday, was on call last night and has to work til 10pm tonight. I don't think I could do the job he does, but I am very proud of him.

Yesterday I received a very scary looking ESA medical questionnaire in the post that I need to fill out and return within 4 weeks. I'd assumed that because I already get DLA and because my GP had provided me a medical certificate then that would be all that was needed for me to claim ESA. But obviously not. If I fill out and return the questionnaire and they are happy that I am not well enough to work then I'll have to have a medical assessment with a healthcare professional. If the medical professional agrees that I am unable to work then I will be able to continue receiving ESA. But if either the questionnaire or medical assessment fail to convince them that I am not well enough to work, then my ESA will be stopped. I know I am unable to work at the moment due to my health, but am not sure how easy it will be to get this across via the questionnaire and the medical assessment, so I'm quite worried about it.

Until my ESA has been approved by the questionnaire and medical assessment then my GP needs to keep providing me with medical certificates to say I cannot work. I received a letter this morning saying I need to provide them with another certificate by Monday because that's when my current one expires. Monday isn't giving me very much notice, so I emailed my helpful GP this morning asking for a medical certificate today, but unusually he hasn't replied :( Can't do anything else, just wait.

Since my last update I've watched 3 DVDs. Baby Mama was a very original idea and was funny in parts, but I don't think it was executed as well as it could have been. Wedding Crashers was very funny and I'm sure I'll watch it again in the future. And the third film I watched was called Fly Away Home. This used to be my favourite film when I was much younger, as we taped it off the TV one year and we all used to enjoy rewatching it. I managed to pick it up on DVD a little while ago but hadn't rewatched it for many years until I decided to watch it again the other day. And I'd forgotten just how good it was :) I'd highly recommend it, as it's very well made, but not very well known.

Yesterday I watched a special edition of the South Bank Show all about the history of Pixar and their films which I'd recorded earlier in the week. I found it really interesting and am now looking forward to rewatching some Pixar films :) Today while eating lunch with my Mum we watched a bit of Who Do You Think You Are which was all about Laurence Lewellyn Bowen's family history. That was quite interesting so we're hoping to finish watching it later. Sometimes I like Who Do You Think You Are episodes and sometimes I don't, as it depends who the celebrity is and what their family history is like.

Today I've also been getting organised for going out tonight. I was a bit worried after feeling so awful yesterday as I didn't know whether or not I'd be well enough to go out today. But luckily I'm feeling much better so far today :) And I'm really looking forward to Save Jess-tival tonight :D I've got a busy day planned tomorrow too with going to see The Rise and Fall of Little Voice matinee performance and then rushing back home in time to watch X Factor, so will probably do my next update on Sunday or Monday. I'll tell you all about Save Jess-tival and might have some photos to show you too :) I hope everyone reading this has a lovely weekend.

Ask Me Anything!
I've stolen this from some fellow Bloggers (Emily, Emma and Rebecca) as I think it's such a great idea. I'd like to invite you to ask me anything via a comment on this post. You can ask absolutely anything and you can ask more than one question if you'd like to, the more questions the better. And anonomous questions are fine too. You can ask me about my health, my life, ME, transplants, organ donation, anything! I will make a start at answering the questions next weekend, so the deadline is next Friday (23rd October). Please leave a comment with a question as I want to have some questions to answer :)