Hello world...

So I'm still here,
still fighting.

In as quick a summary as I can manage, here's what's happened:
Managed two weeks out of hospital. Spent a week in a morphine haze in Jersey hospital where they then decided they were so worried about the fact that I was getting worse that I needed to go to Southampton again - cue air-ambulance and more days of not remembering what even happened, who I talked to. Couldn't eat for over a week, weight had already dropped to a lovely new low of 33kgs. Started becoming more aware that I was on the ward in Southampton. Started to eat a little but all conversations with doctors revolve around my weight. Request CT scan to see what exactly is going on in those lungs, told no because I had one only 6 weeks ago. Had chest xray and doctors decide actually CT would be useful. Come back with report that "they have never seen such shocking amounts of damage in such a short space of time". Saw CT. Spent afternoon in shock at how scarred and gnarly my puffers look. Oh, and had lung function resulting in 22% best FEV1. Doctors say that they don't know why but my cepacia has just run riot and destroyed my lungs faster and more efficiently than ever before. Changed onto new antibiotics - pullin' out the big guns! Likely to be long term. Decision made to have a Peg (feeding tube) inserted into my stomach as I just cant seem to eat enough - eating until I'm stuffed plus liquid calories in Ribena is not giving me even half my required calories. Days spent in agony - chest constantly on fire and legs at their worst - pain from osteopenia plus muscles seizing up from sitting so long, plus pain from immense swolleness due to infection using up my proteins. On constant morphine drip plus top up doses and other painkillers, but can't think from the pain 95% of the time. Mum here for cuddles but causing major problems with her work. I hate the burden that I am - I can't even lift myself into bed at the moment.

Enjoy the whinge?
:) sorry.
I've got some sweet pics (unfortunately only camera-phone quality) of my drug cocktail and swollen tellytubby cankles for you to look forward to.

I'm waking up pretty much like clockwork between 4am and 5am every morning and not getting back to sleep (damn the pain) so this is a new experience for me, being on the computer before lunchtime!

Comment if you feel so inclined and update me on you (or others?!) - I'd like to know everybody's news and how everyone is health-wise...will be making my way through the blogs but there is a LOT to catch up on!



i'll leave you with another hospital webcam photo. love to all <3

Exhausted

This tiredness is taking over.
I went into town today to get a foot scrubber thingy since my tattoo is tomorrow and I dont want to have manky feet! Wasn't out for long at all and didnt exactly walk far but after having to stand on the bus home and then walk from the bus stop, I was in tears from tiredness by the time I got home. Couldnt breathe or think or move. After what should have been a FIVE FUCKING MINUTE WALK - took me almost 25 minutes by the way. My head is pounding and it feels like a giant is squishing me round the chest. But I don't want to go into hospital, it sounds stupid and i know it's needed... but i really feel i'd rather just get more ill than go in, be alone and have no visitors or food, have to do sodding physio in front of people, have everyone talk to me as if I'm 10 years old...
and i dont trust the nurses at all they only wear gloves probably half the time and ive lost count of the number of occasions I've been given the wrong drugs or wrong doses! I could do better myself if the freakin drugs didnt make me sleep 20 hours a day leaving me unable to actually get up every 6 hours and mix and administer the bastards.
Not really sure what to do?
Sorry for another moany post.



Here's some pictures of what i got today - dress on sale in Oasis £9.00 down from £35, which I've wanted for ages!

It's a bit boring and straight up-and-down when on (except for the extremely obvious belly bloat, eugh) so im gonna try and change it up a bit, somehow.

And I got given such a pretty bag :)

(sitting on my pretty bed. i love my bedroom at dads <3 yay)

And also spent some of my makeup voucher from Xmas, the cream eyeshadow is a lot darker than the photo, like a dusky/bronzey pink, i love it! and that there is a gold eyeliner. Usually my makeup routine consists of moisturiser, lip balm and lots of eyeliner but Ive been getting really into doing different stuff with it recently!


Hope all of you are well... Much love xx

Late Sunday photos.

On Friday I had a looong chatty lunch at a beach cafe called the Hungry Man at a little bay called Rozel with one of my bestest friends India.
It was pretty :)



i want to buy a boat and sail away.


Last night I managed 45 mins at a Glitter themed party, I wore a plain black dress with glittery tights and eye makeup...i own no sequinned or glittery clothes...
But i was in agony with my bones and couldnt hack it, so another let down of a night!
But here's me and the birthday girl :)

On the upside, I managed to put on falsh eyelashes for the first time ever :O
lol
They were pre-glued which i think helped, stickier than usual glue!


I dont think i can say much else right now. Things are pretty damn shit and im struggling! A Lot!
Im lonely and feel ill, and my family is so fucked up, and im so stuck and confused with money and home, and i feel ugly and just so low, i dont want any of it any more, i cant cope.
any suggestions?!
:S

Hope everyone else is getting on okay.
XX