Friday, July 30, 2010
Thursday, July 29, 2010
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
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
Monday, July 5, 2010
Zzzz...
I'm sleeping most of the time. Still haven't collected any stuff from mum's house as just too tired, so my project is on hold!
I'm trying to stay positive, upbeat etc. but every once in a while something catches me unawares, depression rears it's head and it feels like my heart has been ripped out, and i don't know why, i'm just suddenly so sad all i can do is curl up to cry.
strange.
I'm trying to stay positive, upbeat etc. but every once in a while something catches me unawares, depression rears it's head and it feels like my heart has been ripped out, and i don't know why, i'm just suddenly so sad all i can do is curl up to cry.
strange.
Friday, July 2, 2010
Tuesday, June 29, 2010
Bump.
After being so happy and upbeat today, a few little things have brought me back down to earth with a jolt. Stupid things: When I was cooking lunch, I wanted to test my blood sugar, leaving th estir-fry going I ran towards the stairs, completely forgetting that actually I can hardly walk up stairs any more. Collapsing on the fourth step was one of those bumps. Another time, I saw a daddy long legs fluttering around the bathroom. Armed with tissue I went to boost myself higher up the wall with one foot on the toilet seat - the foot that was on the floor lifted but the supporting leg didn't do a damn thing. Cue me on the floor, having narrowly missed knocking myself out on the sink. Bump.
But overall, enjoyable day. Very happy to be home. My dad came home relatively early from work and we went for a walk on the beach - admittedly only 10 minutes tops, and my lungs burned for an hour after - but it felt amazing to have the sand between my toes again :)
I've thought of a little project for myself!
Another of the new dvds I watched in hospital was "A Single Man", you know, with Colin Firth? It was different to what I expected, deep, but beautiful. A line caught my attention- One character said something (I haven't got my notebook to hand so you'll have to forgive me that this isn't 100%!) like: "Sometimes awful things can have their own kind of beauty."
It made me think. And after several thought trains, I came to the conclusion that I want to do a little project, and find one thing each day in which to appreciate the beauty. I'll take pictures if I can, and try to do it for a month. I'm excited! When you're not in school, are unemployed and have no hope of being able to do a job, you have to create your own ways of keeping busy ;)
Having said that, another little project I'm working on is becoming a volunteer for my local Samaritans hotline. I think I can empathise with the feelings people who call might be having, and I want to feel like I've made a difference to somebody's life.
But overall, enjoyable day. Very happy to be home. My dad came home relatively early from work and we went for a walk on the beach - admittedly only 10 minutes tops, and my lungs burned for an hour after - but it felt amazing to have the sand between my toes again :)
I've thought of a little project for myself!
Another of the new dvds I watched in hospital was "A Single Man", you know, with Colin Firth? It was different to what I expected, deep, but beautiful. A line caught my attention- One character said something (I haven't got my notebook to hand so you'll have to forgive me that this isn't 100%!) like: "Sometimes awful things can have their own kind of beauty."
It made me think. And after several thought trains, I came to the conclusion that I want to do a little project, and find one thing each day in which to appreciate the beauty. I'll take pictures if I can, and try to do it for a month. I'm excited! When you're not in school, are unemployed and have no hope of being able to do a job, you have to create your own ways of keeping busy ;)
Having said that, another little project I'm working on is becoming a volunteer for my local Samaritans hotline. I think I can empathise with the feelings people who call might be having, and I want to feel like I've made a difference to somebody's life.
Home Sweet Home ♥
I'm home.
It's just fantastic :)
This morning I stayed in bed until it wasn't morning anymore, and there were NO doctors coming in to see me and tell me nothing, NO hapless medical assistants sticking me for blood, NO monitors bleeping or signs being measured, and NO disgusting hospital food being wheeled in to aggravate the nausea.
I got up at 1.30pm and ambled downstairs. Opened the glass doors up to the sun and ate fruit in the garden. I'm loving being home.
My tasks for today are as strenuous as eating as much as I comfortably can, clearing my chest as often as I comfortably can, watching as much tv as my brain can comfortably take! Not too hard. I can handle it ;)
Other than than, I'm amalgamating the one million mini lists that I have accumulated whilst being in hospital! My need for lists didn't fade, and not having the "right" notebooks with me means I now have several (hundred?) scraps of paper with scribbled lists. So I'm trying to take pleasure in creating one big list of all the things I need to sort in the upcoming days or weeks - I'm thinking fiercely positive and aiming for build-up of strength and stamina, and at least a good few weeks before I need to go anywhere near the hospital again. I have an appointment for Annual Review - my first in 2 or 3 years - around August 20th. Now if I make it that long without any contribution from doctors or new medication it will be a big surprise but a girl can dream, right? :)
I feel almost drugged, I'm so bright and positive -feeling. It won't last. But let me enjoy it while I can, okay?
It brings me down knowing some of my friends are back in hospital and in the state of mind that I was just a day or two ago... but I'm going to do my best to sort a little smile for them.
It's just fantastic :)
This morning I stayed in bed until it wasn't morning anymore, and there were NO doctors coming in to see me and tell me nothing, NO hapless medical assistants sticking me for blood, NO monitors bleeping or signs being measured, and NO disgusting hospital food being wheeled in to aggravate the nausea.
I got up at 1.30pm and ambled downstairs. Opened the glass doors up to the sun and ate fruit in the garden. I'm loving being home.
My tasks for today are as strenuous as eating as much as I comfortably can, clearing my chest as often as I comfortably can, watching as much tv as my brain can comfortably take! Not too hard. I can handle it ;)
Other than than, I'm amalgamating the one million mini lists that I have accumulated whilst being in hospital! My need for lists didn't fade, and not having the "right" notebooks with me means I now have several (hundred?) scraps of paper with scribbled lists. So I'm trying to take pleasure in creating one big list of all the things I need to sort in the upcoming days or weeks - I'm thinking fiercely positive and aiming for build-up of strength and stamina, and at least a good few weeks before I need to go anywhere near the hospital again. I have an appointment for Annual Review - my first in 2 or 3 years - around August 20th. Now if I make it that long without any contribution from doctors or new medication it will be a big surprise but a girl can dream, right? :)
I feel almost drugged, I'm so bright and positive -feeling. It won't last. But let me enjoy it while I can, okay?
It brings me down knowing some of my friends are back in hospital and in the state of mind that I was just a day or two ago... but I'm going to do my best to sort a little smile for them.
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