Ask Me Anything Answers - Part 2

This is part 2 of my Ask Me Anthing answers. Part 1 can be found here, so if you missed it please have a read and leave a comment. Part 3 (the final part) will be posted up tomorrow evening :)

Becky asked a few questions :)
'Have you ever had the 'why me'/'it's not fair' feeling about your transplant/tiredness?'
Of course, I don't think I'd be human if I hadn't thought that at points. I would assume I had that feeling at points before my transplant, but was so ill at the time that my memories from that period are quite patchy. I don't remember having it before my liver failure though when I was on TPN, because that was all I'd known so I just coped with it and didn't question it.

I have definitely had that feeling about the ME though. After having health problems for pretty much all of my life, once I'd had my transplant and recovered from that I'd definitely hoped that that would be the end of it all. I had about a year of fantastic health after I'd recovered from my transplant before I developed ME. It's more frustrating than anything else because now I've had the transplant I just want to get on with my life, but the ME is getting in the way of that. I do try my best though not to let it stop me, but it's difficult.

'Did your friends in sixth form know about your transplant? If not (I have a feeling you said that they don't somewhere, although I may be imagining that!) why didn't you want to tell them, and has in been difficult to explain hospital trips/tablets etc? If you did, how did they react to it?'
When I started at sixth form I made the decision not to tell any students about my transplant. I let my teachers know though for safety reasons just in case something happened when I was in their lessons. I decided not to tell any students because I wanted a fresh start and didn't want sympathy or to be treated differently because I'd had a transplant, I just wanted to be normal. I'd never had that chance at my previous secondary school as the jaundice from my liver failure couldn't be hidden and felt I was treated differently because I was ill. I'm also quite a private person and knew that I might tell some friends at somepoint, but if so it would have to be people I trusted, I didn't want everyone to know about my health. And at the start of sixth form I didn't know who I could trust and who would be my closest friends. As sixth form progressed I wondered if I'd made the right decision and did wonder about telling friends sometimes, but didn't know how I'd do it and how I'd explain why I'd not told them before.

My consultant, Dr G, at Hospital B understood how important sixth form was to me, so always did his best to arrange my clinic appointments and inpatient stays during school holidays so I didn't have to miss much school at all. And if I did occassionally have to miss a day of school I just said it was for a dentist appointment or said I'd had a cold or something. By the time I started sixth form 10 months after my transplant my tablets had decreased significantly and so I only had to take them twice a day, which I did in the car on the way to school and in the evenings, so no-one ever saw me taking tablets at school. Sometimes it got a bit tricky when friends were discussing their year 11 proms as I'd not attended mine, but I just made out that that was my choice, rather than admitting that I'd not been well enough. And discussing GCSEs was interesting as I'd only got 6. But I just admitted that I'd been ill then (and in other tricky situations) and no more questions were asked.

My holiday to Florida in March 2008 was granted for me by the Make-A-Wish foundation. However I just told friends that it was a family holiday and didn't mention Make-A-Wish's part in it. For my birthday later that year though I asked for donations to the Make-A-Wish foundation instead of presents, so wasn't sure how to explain that to my school friends. I explained to a couple of my closest friends, who I thought might want to get me something for my birthday, that the Make-A-Wish foundation had organised the holiday for me because I'd been very ill before I came to sixth form and left it at that. My friends were fantastic in not asking any further questions, I think they knew that if I wanted them to know more then I would have told them, and they respected that.

The hardest thing to keep hidden was my illeostomy which I had until the summer between year 12 and 13, so I had that for a year of sixth form. I managed though, but it could make some loud noises in quiet lessons and needed me to leave lessons sometimes to empty the bag.

I decided to tell my closest friend from sixth form, C, last Christmas when I went to her house during the holiday as we would be going to Japan together so I thought it'd make things easier if she knew. And I definitely trusted her. She took it really well. She understood why I'd not told her before or told anyone else and she was really pleased that I trusted her enough to tell her and that she was the first person from sixth form that I'd told. And she said she wouldn't tell anyone else and I knew I could trust her. I think that definitely made our friendship stronger and it also meant I didn't have to hide anything from her any more.

It was interesting going to Japan because I had to get my four 1 litre bottles of sterile water through customs (to drink on the plane journeys because I can't drink normal tap or bottled water). I had a medical letter so we didn't have much trouble, but I'm sure some of the students in our group wondered why :P No-one asked me anything though and so I didn't tell anything. In Japan I was sharing a room with C, another friend A and another girl. I took my tablets, boiled up my water etc and no questions were asked by the 2 girls who didn't know about my transplant. I did tell A part way through the trip though because I trusted her and thought she deserved an explanation. She took it much more matter-of-factly that C had and just accepted it with no questions or anything. I never told the other girl in our room anything though because I didn't feel I could trust her.

I also tried to keep my ME hidden at first, but that was much harder as it affected me much more day-to-day than my transplant had. C was the only friend I told about that while we were still at sixth form, but I did announce it to all my friends on Facebook as soon as I got a diagnosis (August) though because I was tired of keeping secrets and keeping things hidden. I have also quite recently mentioned my transplant a couple of times in my Facebook status because, like I said, I don't want to keep things secret any more. And also when I wrote in my Facebook status about the need for more people to sign the organ donor register I thought mentioning my transplant might make my friends more likely to sign up.

I'm almost completely comfortable telling people about my ME now but am still a bit cautious when telling people about my transplant. I have to get to know them first, I wont tell strangers. I told a friend I met through an ME forum on MSN a few weeks ago and he took it really well. And telling him my story persuaded him to sign the organ donor register :) I chat to a few people on ME forums at the moment and one of them asked me last week what I'd been ill with in the past, because I'd mentioned I'd only got 6 GCSEs due to illness. I wasn't sure whether to tell her anything or not because I don't know her very well. But I did and then asked her to consider joining the organ donor register. She is finding out more about organ donation at the moment and has been talking to her family about organ donation :)

'Can you stay anywhere other than your house (eg. friends' houses, relatives) with the NG tube/other medical things and abbreviations that I forget!'
Don't worry about remembering all the medical terminology Becky, I only know it all because I've grown up with it, so I don't expect you to remember it all :)

Before my transplant I was on TPN 7 nights a week. I went on 2 school trips with primary school (when I was 9 and 11) and my dad just came with me as a parent helper and he helped me sort my TPN out too. Instead of staying in the dorms with everyone else me and dad just had our own room.

When I was at secondary school sleepovers were very popular and I didn't want to be left out. So I took my TPN to sleepovers as the pump and feed bag fitted into a small ish rucksack. It was very heavy though as each TPN bag (I had one a night) contained 2.5 litres of TPN! Beforehand my mum would visit my friend's mum, check them out and if she was happy for me to sleep there (which she always was) she'd explain everything to the mum. Then the sleepover would go ahead as I could do all my TPN myself by that point. I'd get connected at home as that needed to be done under quite sterile conditions and then go to the sleepover with my rucksack. In the morning I'd disconnect myself at my friend's house. I never had any problems apart from one morning when the cap on the end of my central line cracked and so blood started coming back though it! I wasn't worried though as it'd happened before (but always at home) so just clamped the line and rang my mum who came with a new cap. It gave my friend and her family a shock though, lol! And those sleepovers were sometimes with up to 8 of us :D My friends were so accepting of it all though and I remember once I was allowed to try just 6 nights of TPN a week giving me a night of freedom. So on one of those nights of freedom I went to a sleepover without my TPN which I was very excited about. My friends didn't even notice the difference though so that shows how accepting they were of my TPN.

Since my transplant I've not stayed away anywhere with my enteral feed, but could do if I wanted to because it's so much easier than TPN (doesn't need sterile conditions to set up and disconnect). Because my enteral feed is more flexible than my TPN (I can go without it if I want to some nights) I stayed with my best friend Lizzy for the first time in August, but just didn't use my enteral feed the 2 nights I was away. I'm hopefully going to stay with her again soon, so will probably just have 2 nights off enteral feed again if I'm not completely off feeds by then. And I didn't need feeds when I went to Japan, which made that all a lot easier!

Tablets have never been a problem because I've sorted them all out myself from quite a young age, so can manage them fine on my own when I'm away from home.

And I've been on family holidays all my life as when we holiday in the UK the delivery company will deliver the TPN or enteral feed to wherever we are staying. We even got TPN delivered to Holland once I think. And when we went to Florida last year I had some nights off enteral feed but still needed it every other night, so we just got cleared for excess luggage and took the feed with us :D

'Do you have any plans to study more?'
I'm not sure. See 'Would you like to study at university?' here for more details. I loved studying before I became ill pre transplant and studying was everything to me. But since my transplant I've not enjoyed it as much but I don't know if that's because my priorities have changed/because I'm older/because the subjects have become more advanced... If you'd have asked me this before my transplant I would never have doubted that I'd go to university to get a degree, but now it doesn't seem as important to me.

'Favourite Pixar Film?'
Quite a tricky question, but probably Monsters Inc :)

And although this wasn't asked I've been thinking about my favourite film recently. I can't decide on just one, but think I could probably pick two - Little Miss Sunshine and Juno :D If you've not seen either/both of them, then I'd highly recommend them :)

'Favourite Mika Song?'
That's a mean question making me choose just one! I love so many of his songs. But if I had to choose just one favourite Mika song I think it would have to be 'Blue Eyes' from his Songs For Sorrow CD and The Boy Who Knew Too Much album. I can't help singing along when I hear it as it's so catchy and it's the song that brings back most memories from the Songs For Sorrow acoustic concert :D And my mum loves it too so we often dance around the room to it :D You can listen to it here if you click on the play button in the player in the top right. I think it's best listened to loud :D

However I'm currently also really enjoying listening to 'Good Gone Girl' from Mika's latest album, The Boy Who Knew Too Much, and think that it might be challenging 'Blue Eyes' for my favourite Mika song! You can listen to it here.