Thursday 23 February 2012

"My Block"

I think I should call this "my block" rather then "my blog". Everytime I try to write another post I suffer from severe mental block!!! I of course will blame the drugs!!
I haven't written a post since September which I suppose make me a crap blogger, but I always feel if I religiously wrote them they would become rather boring and repetitive!
So im back in hospital, but im ok! Trying a couple of new drugs which is fun! One of which they had to get sent over from Spain which took 5 weeks to arrive!! Its an interesting one put it that way. I feel rather spacey at the moment but hoping I get used to it. Not sure if its the new I.v antibiotic or a new tablet I started to try and prevent my stupid migraines which are causing me stroke like symptoms. I saw a neurologist about this a few months ago and was told he believes its a type of migraine called a Hemiplegic migraine. It always happens to me after I have a coughing fit when I wake up in the morning and then cant move for upto 20 mins which is a pain in the ass! Then i get tunnel vision and head pains, which seems to be lasting longer nowadays, so its taking at least a couple of days to recover from. So hopefully these tablets will work better then the previous ones but they do make me dopey! : (
So of course im still waiting for my transplant. It will be 2 years next month that I have been waiting. I had my latest review a few weeks ago which is getting rather repetitive now. My weight had dropped abit though due to having had a sickness bug all week but they werent too worried as long as I didnt loose anymore and put it back on. So back for another review in April, unless I get a call before then but I wont hold my breath!!(because i cant!! lol)
The past week and weekend has been pretty manic. After a couple of days being in hospital the woman who wrote my articles for the leicester mercury called me and said the Bbc have called wanting my number. Not having a clue why I gave permission for it to be passed on. So within literally a few minutes a woman from the bbc called saying she was the producer of a show called the big questions on bbc1. I was asked if i would be willing to appear on their show to talk about organ donation and was told all about the programme. After explaining my views on organ donation and finding out it would be filmed live on that coming sunday, i agreed to do it. I wasn't exactly keen on doing it but the more awareness for organ donation the better!
All my travel was organised to go to and from Cambridge and accommodation for the saturday night so I didn't have to get up at 5 in the morning, which I definitely didn't want to do!
So after sorting all my drugs and ivs out at the hospital I set off to Cambridge on the saturday afternoon and at that point i thought i would be starting to get nervous but strangely I didnt. Nor was I the following morning! After rushing around getting ready and throwing breakfast down my neck (due to only having 15 mins to eat it) I was picked up to go to the school where they were filming. I was checked by security (because obviously I looked like a threat) then was shown to the green room which was filled with lots of different drinks, biscuits and tiny blueberry muffins (no chocolate no!! bloody blueberry!). Everyone introduced themselves to me (well nearly everyone, bar a few) and they all knew who I was, which was odd because I had no idea who any of them were except Nicky Campbell who presents the show. He also knew who I was but apparently he had been given a photo of all the guests on the show. God knows what photo of me he had!!
After brief discussions with people we were taken to the set which they had put together in the school gym. Very weird and too much orange for my liking!! Each quest was individually introduced clapped onto the set which if anyone knows me would know how much I hated it! Then after having to sit down and getting "mike'd up" and discussing a few practise questions we were all set to go live....and of course shit myself!!
I was so glad that organ donation was being covered on the second half of the programme because it gave me a chance to calm down while trying not to fall asleep listening to the first half!
The organ donation part I thought went well although I did think they would ask me questions about my current situation, including my Cf or about waiting on the list itself. Although I wasn't bothered really because I think I would have been more embarrassed talking about that stuff. So after ignoring the bloke with dreadful man boobs (who seemed to stereotype all people needing lungs or a liver as smokers and alcoholics) then asking the Muslim woman opposite if she would let her child die rather then letting them take an organ, i actually learnt how naive people can be. Luckily the 2 men sitting either side of me were lovely and agreed with everything I said, otherwise I would have struggled to keep calm and "maintain my composure" as advised by father!! Although I did manage to accidentally rip the microphone off my top while live but i quickly managed to get it back on without any major panic!
So by 11am when the show had finished we were literally pushed out the building. Although they were all lovely people (besides a few of course) and made me feel very welcome. Then off home i went!!
So other then that nothing major has happened. Bella turned 3 in January which was nice but scary how fast shes growing up. Maybe its not necessarily a bad thing, if it happens quickly then more chance of me seeing it!

Im managing to keep myself maintained health wise to the best of my ability. Bella provides my extra physio which is keeping me mobile as much as possible. So fingers crossed I get my proper call soon. No more of this false alarm crap!!
If I dont blog/block for a while, its because I cant be assed!! Or I feel I have nothing interesting to say!
Heres the link for the show- 

http://www.bbc.co.uk/iplayer/episode/b01chykw/The_Big_Questions_Series_5_Episode_7/

oh and most importantly its kellys birthday today, happy birthday!!!

To be continued.....